Secondary Progressive Multiple Sclerosis - Transitional Stage
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- Опубликовано: 15 сен 2024
- Secondary Progressive Multiple Sclerosis (MS) - Transitional Stage
(VIDEO 13)
I've been to see my Neurologist today at the hospital!
In this video, I talk about how I've explained I don't feel my 'flavour' of MS is Relapsing Remitting and that I feel it leans more towards Primary Progressive. But after chatting to my MS Specialist (who did listen to me carefully I felt) she feels that I could well be entering or have already entered, the transitional period to Secondary Progressive MS. I agree.
I also raise the issue of this dreadful chest pain I am continually suffering from, however I don't really feel I've made much progress with this and will just have to continue to endure its idiopathic nature. Unfortunately for me, the impact this pain has on my quality of life is phenomenal.
Finally, I chat briefly about the Neuro exam which took place and a possible drug for me to start using due to the spasticity and stiffness in my leg muscles called BACLOFEN. I don't like taking drugs because of the side effects and I'm loath to start taking it to be honest.
I hope you enjoy the video and find it useful in some way.
Early Symptoms started 2007:
1. Numbness.
2. Burning.
3. Tingling, humming, buzzing.
4. Skin sensitivity or Altered Sensation.
5. Squeezing sensation especially in the Legs.
All of the above across my Feet, Legs, Hands, Tummy and Back.
New Symptoms starting Feb 2012 (Major attack)
1. Weakness.
2. Spasticity.
3. Abnormal Gait (walking as if drunk).
4. Extreme lower back weakness.
5. Severe Chest Pain.
6. Anxiety.
7. Tremors.
If you've enjoyed this video and you feel that if may help another person in some way, please consider SHARING it on your social media - Thank you.
Don't forget to check out the other videos in my MS Vlog Playlist.
• (MS) My Life with Mult...
My name is Teresa Bradley, Neil is my husband. I'm so very proud of Neil, he is so courageous and thoughtful but doesn't realise it, his aim to help fellow M S "friends" is commendable and shows just what a good guy he is.
Thank you Dearest, you're my rock and you know it. Love you millions. Xx
I agree, Neil is a great guy
Thanks Kevin :)
Teresa Bradley, Yes he is. He has already helped me and I've only watched a few. God bless you both. And thank you.
Dear Cindy, thank you very much indeed for your very kind words. I'm super pleased that my videos are helping you in some way.. this is so encouraging for me. Bless you too Cindy, and I hope that this message finds you well and in good health. If ever you want to chat, please feel free to stop by any time.. I try and respond to comments within 48 hours, although just recently my channel is getting quite busy.
Take care.
Kind Regards - Neil.
My Ex husband was just diagnosed with secondary progressive after the relaxing remitting phase. I try to support him as much as I possibly can while living 300 mikes away. I care deeply how he is doing. I just want to thank you for your honest and brave ability to reach out to others. It really helps for those going through it to have a voice and the family who tries to understand what they are going through. Many blessings and continued strength to you.
Hello Crystal Lady .. thank you for taking the time to watch my video, and for your kind words, they are greatly appreciated. Comments and feedback such as yours always inspire me to produce more content as they actually make me feel I'm doing some good in the world, reaching out to help people. I totally understand how your Ex-husband must be feeling after his diagnosis, and its lovely that you still continue to support him albeit across a fair distance. It's great we've got this amazing technology (the Internet) which can bring people together by way of video calling, Facebook, Instant Messaging or just plain old email. It's really great that you continue to support your Ex-husband even though you now lead separate lives, and I bet he really appreciates it.
I really do try to reach out to other people with my own personal experience of this horrible condition, I like to try and "Keep it Real" so somebody watching my video may have that "Ah-ha" moment and realise that they are not alone. Hopefully it makes things just that little bit more bearable.
Blessing to you too Crystal Lady, lovely to hear from you.
Kind Regards - Neil.
Thank you for sharing
Hope tomorrow your feeling bit better . Love to you and your beautiful wife 😊🙏🏻💕
So glad to see someone, more in my age group, talk about our MS going in to secondary. I have watched videos of young 20 somethings, 30 somethings, and I don't have remission, like they do. I am progressively getting worse, and will soon be 52 years old.
+Andrea Wheatley Hi Andrea, yes I can relate to you. In ten years I've had two major relapses, the latter in 2012 left me with a ton of disability and was life changing. Since then I've believe I've had flare ups of existing symptoms, but no new symptoms/remissions etc. My Neuro begs to differ, I believe she's wrong.. I know my own body and I certainly don't fit the bill of RRMS. Like you I'm progressively getting worse and worse, I've noticed it a lot this last few months. I've researched this a lot, and I tick all the boxes of PPMS.. Thanks for contacting me Andrea, good to hear from you. How is your MS effecting you?
I think my MS started many years ago, I can remember symptoms, really starting to effect me at age 35, but I ignored them, until finally in my 40's, I woke up one day, and could not walk. It still took 4 more years, for a final diagnosis, MS, that was at age 48. I was in the hospital, with what they at first thought, was a stroke, even though, I had been tested for MS, a few months before, and the MS Clinic, knew I had it, and didn't tell me. It was at that hospitalization, I learned there were over 20 active lesions in brain, I had to relearn how to walk, talk, swallow, and get my hands and speech back. I had 6 more relapses within the last 4 years, that required hospitalizations. I have permanent damage, that is progressively getting worse, and new symptoms are occuring. My most disabling symptoms, are, legs are very weak, and I cannot lift them, I fall all the time, I need a wheelchair now, so that is the next step. I have crippling fatigue, and it is all the time, constant vision problems, double vision, and blurry vision, my hands no longer grasp, like they once did, and become very fatigued, if I make them work at something, such as a craft. I have days that are okay, and I have days, where I have to stay in bed. I just plow through it, last hospitlization was in May, and my Neurologist, has a new girl hired on, who did not get me in to see him, within 2 weeks of discharge from the hospital, and no PT was ordered as was the request upon discharge of the hospital. PT did come evaluate me in the hospital, and found that my left leg, does not work at all now, and my right leg is a bit stronger than the left, but also does not work very well. I have zero reflexes in my legs and arms. I have numbness all the time, and it moves around, but it is there every day and night, my pain is very high, and gets worse at night, with the spasms in the hips, legs, feet, toes. I really hurt at night, worse than during the day, I'm can't type anymore, arms are hurting, prayers.
Hey Andrea, thank you very much for sharing how MS Is effecting your life. I found it very interesting reading. I found it particularly interesting that you were in your mid 30's when your first symptoms started. So was I !! I was 34 (I'm almost 45 now). I'm really very sorry to hear how MS has taken away your independence, but not only that you have so many other things to deal with. My mobility is a constant worry for me, even now as at the time of writing, I'm struggling to stand and move from room to room. It is very clear to me this thing is now progressive. It's scary. Take care.
Never be scared, or give up the fight. I've learned those are my best tools. I will never just give up, and push yourself, while conserving your energy of course, because that is a very important factor, my doctors, have told me. Keep going, if you need to rest, then rest, if you need more rest in between things, take it, but keep going. We got this, we are Warriors, forever and always. XoXo, and many prayers.
Thank you Andrea, wise words. Many prayers to you also.
Neil I've just listened to your story and bud I'm you! I have the exact same issues that your having I'm 45 and was diagnosed in 1999 with RRMS and I to think I'm entering the SPMS phase of the disease. I have the pain in my chest just under my left rib cage and pain in my lower back. I have been taking Baclofen for years for my restless leg and it does help me relax enough to fall asleep but I wake up most mornings legs stiff and in pain. I too think I have spinal lesions but my nero doesn't feel the need for an mri on my spine. stupid! what I have been using recently is marijuana CBD strain (the strain that doesn't get you high)liquid form and that helps with my chest and back pain plus it does great on my anxiety. You might want to give it a try.
Cheers
Jay
I was diagnosed 1998 my MS getting worse MS is a disease gets worse slowly I'm disabled since 2015 I believe in God god bless both of you Neil MS looks a lot like mine
Thank you for sharing because I am 43 I was just diagnosed with MS and I feel exactly the same way. I feel terrible every day it never gets better. I am also have chest pain and heart palpitations that I have always been told is anxiety
Hi Jennifer, thanks for reaching out. I'm sorry to hear about your MS diagnosis. Yes absolutely, I can certainly relate to you feeling rough every day. For me, when I was first diagnosed in 2013 I was offered IV Steroids which help reduce inflammation, for a few years this treatment did help me feel better quite a lot, sadly now it doesn't seem to have much effect, it's as if my body has become used to it. You might want to speak to your Doctor about this as it may well really help you (everybody is different). It's quite important to get on a good disease modifying therapy, this is treatment which will help prevent attacks by your immune system (which is what MS is effectively, the immune system attacking good tissue)
I recommend checking out "Aaron Boster MD" (if you haven't already), if you do a search on RUclips he'll show up, he's the best!! and can teach you so much about your condition. His videos can also help you gain a proper understanding of what's happening to your body because of MS, and lots and lots of ways to help you cope.
I hope this helps you - Neil.
@@NeilBradleyMS I was in the hospital for 5 days right after my diagnosis on Iv steroids. I was in excruciating pain for 3 or 4 days afterwards, the dr just blew me off but I found out, through my own research that it was most likely due to them not tapering me off of the steroids. I never want to go through that again
AND ME - TOTALY, this could be me talking. My doctor said it couldn't be PP for the same reason as you. I keep insisting I am slowly getting weaker in the legs. I now can't run or even walk fast. My lesions are in my spine also. I am in my 50's. I have always said that since the first attack I don't fit into the RR pattern. You have said exactly how I am and feel. So far they won't talk about SPP as far as I am concerned. I now can't stand at the kitchen work top for any longer than 10mims before my legs go numb and weak and I have to sit down. This didn't happen overnight - it has just crept up on me....
Blimey Trev, everything you've just mentioned I am exactly the same! Unbelievable, even standing in the same spot (shoppers back).. I've felt pretty much since the first year of diagnosis with RRMS that I haven't relapsed regularly, I know the trend of my symptoms better than the doctors. I'm not having relapses I am having flare ups of existing symptoms, no new symptoms. Sounds familiar Trev? We're even in the right age group. To be honest I originally thought I was PP because I completely match all the symptoms and even the age group, as do you. But the Neuro insists it's not.
Then ask your doctor if you would recommend the trail.
still waiting for ms diagnosis myself ! follow up mri showed the lesions in my spine weren't visible anymore. but I still have many symptoms , and have difficulty walking for distances, sensory disturbances and feel like I have to take a piss all of the time ha ha. so much fun. sorry to hear you and so many other people are going through this as well. miserable !
Hey Jon, great to hear from you again :)
Hang in there, that's all I can say because it really does take a while.. I feel like I'm going to be in the "Transitional" stage now for quite a long time. Yes, I can relate to all you have mentioned to some degree or another and it really does effect daily life doesn't it. It is miserable, I try to stay focused on things I enjoy doing (such as these videos ha ha) as it keeps me focused and out of being, down in the dumps. Take it easy my friend!
To AJ HR - Hi there, thanks for that.. this is about the 3rd time I've tried to post a reply to your comment.. for some reason it won't show it.. so I'm trying yet again :) I've had just about every test going to try and get to the bottom of this dam chest pain but all comes back negative. It makes you feel very despondent when it all comes back negative, very frustrating. Take care. (I've posted this as a new comment because it won't like me post a reply to your comment for some weird reason)
We are similar. I don't like taking any drug unless I absolutely cannot get along without it. I have very strong painful spasms and finally went on Baclofen to easy that symptom. My only side effect in the beginning was it made me sleepy. I have been diagnosed with both primary and secondary progressive. I believe the nomenclature is in the eye of the beholder. The title does not effect the symptoms. I do not take any specific MS drugs. Thank you for sharing your story.
Hi Lynn and thank you for contacting me. I'm the same, hate taking drugs until I absolutely feel they are necessary. Have so many unwanted side effect that are hard to cope with, even though the Dr's say the benefits out way the side effects. I've been prescribed Baclofen also but to date haven't taken it. All I take is Pregabalin 75mg to help with nerve pain at night.
Oh blimey you've completely skipped the RRMS stage, to be honest I don't think I ever was RRMS and I actually fit the classic symptoms of PPMS but it's convincing the Dr's of it because "they know best". I hope your managing your condition ok and it's not too distressing for you. I couldn't agree more with regard to the nomenclature.
I'm glad you enjoyed the video, and thank you again for taking the time to drop me a comment.
All the best - Neil.
I really liked what you had to say, I subscribed immediately. Looking back on it now the doctors who diagnosed me with secondary Progressive say I've had Ms since 1977. They believe it was remitting relapsing then. now I see a specialist who believes that I never had remitting relapsing and that this is just primary. I was not diagnosed until I was 51 and I have no brain lesions. I have some very large spinal lesions. I manage well enough. I have caved and I do take Baclofen and ampyra. It took me 8 years to decide to take the drugs. I also take a steroid once a month, 1000mg of methylprednisolone. they call it a pulse steroid. I'm in a wheelchair now. I saw one of my neurologist last week and he recommended biotin 100mg three times a day. Women take it for hair and nails but now they're finding that it also regrows some nerves. There have been some trials that he said are very promising.
Hmmm, interesting how they now think you've always been primary. I studied my symptoms, relapse frequencies etc and came to my own conclusions. Only two major relapses in ten years, I sure didn't fit in the RRMS bracket.
Interestingly I don't have any brain lesions either, only spinal cord. Consequently I have a great deal of problems walking, especially balance and stiffness in the lower back. So sorry to hear you're in a wheel chair, that must be difficult for you and I hope you're coping ok with it ok.
The Biotin does indeed sound very promising, good luck with it and I hope it has a positive effect for you.
Thank you for subscribing, I really do appreciate it. I'm guilty of not doing a video for quite some time. Producing them is very time consuming.
Regards - Neil.
I have relapsing remitting and i don't like taking drugs either. I am 28 and was diagnosed at 24. If I were you i'd talk to a different neurologist and see, also look into some clinical trials maybe. I take that muscle relaxer when absolutely necessary. sometimes my leg pain is so unbearable that i take it before bed, it makes me very sleepy but it helps a lot. I wish you the best.
Hello :)
Thank you for your comment, I really appreciate your input. So you're pretty young to be diagnosed with RRMS, I hope that you're managing things and coping ok with it all. Just a quick question, how long prior to be diagnosed at 24 were you having symptoms for?
The Muscle Relaxer you talk about, would this be by any chance called Baclofen? I've been prescribed this drug but as usual with me the side effect put me off taking it. Although I might consider taking it from time to time to help, I'm having terrible muscle spasms in my legs, especially when I've been relaxing.
Thank you for your good wishes, they are gratefully received.. sending them right back :)
Kind Regards - Neil.
I do not recall any symptoms before diagnosis. I've always been an active person and life was pretty normal. I woke up one morning after a bad headache without being able to see out of my right eye. I had developed optic neuritis. After a series of doctor appointments and an MRI i ended up at a neurologist and diagnosed. I do have baclofen as my muscle relaxer. It makes me sleepy but that's all, other than that i love it. It really helps when i'm in a lot of leg pain or face pain mostly. I will take it before bed only when needed. I wish you all the best.
Thank you for coming back to me.. The Doctors always say that you have to keep taking these drugs to "get them into your system" as this is how they work best. But I'm beginning to think using them as and when I feel the need is more fitting to my circumstances.
Optic Neuritis is definitely one of the very first 'classic' symptoms of MS, and a particularly unpleasant and frightening one also. I have no brain lesions so I'm fortunate enough to have not experienced it, I've only got lesions in my Spinal Cord.
I hope you've had a nice Christmas, Happy New Year to you.
Regards - Neil.
I had to jump over here and see how the appointment went, I get frustrated when doctors dont really listen, they just pick out something to focus on and ignore everything else you are saying. I guess Ill find out in another video if it is MS hug or something else, Im not so sure mine isnt an esophageal spasm, its very painful and I cant function with it, I hope its better for you now.
I know what you mean about Dr's targeting something in particular and focusing on that, instead of the real issue in hand. This is in fact quite an old video now, and unfortunately I'm significantly worse than when I made it and also with a new diagnosis now called NMO. I hope you get to the bottom of the reasons behind your Esophageal spasm's. Take care.
How is it possible that individuals with Relapsing-Remitting can jog, run, normal gait and movements was your question. Well, while you are still in the R-R phase of the disease when you experience a remission you are as good as new! You are completely symptoms free, thus as normal an individual as the others. This is how. I have been having having MS for almost 30 years without any mobility hindrance whatsoever, playing tennis, jogging etc. After this transitory R-R phase passes, it slides into the secondary progressive where: there are no resounding relapses, symptoms do not go away anymore ever, there is a very-very gradual slow progression ....almost unnoticeable progression. So, basically in the R-R phase people are perfectly normal in the remission phase that can last years upon years. That's the nutshell of it.
Thank you Laura, I really appreciate your comment and explanation.
The reason I couldn't understand this is because I was diagnosed in 2013 with Relapsing Remitting MS but I had considerable disability after an attack a year earlier in 2012. Prior to that all of my symptoms starts in 2007 but were only sensory, ie my skin just felt very odd but I had absolutely no muscle weakness. So I would read about and see on tv lots of RRMS'ers leading perfectly normal lives physically and I'm thinking how?
After some research recently I began to wonder if I was actually Primary Progressive because as I only had five years (2007 - 2012) without disability. Since 2012, my disability definitely hasn't improved and I I would say is slowly getting worse but as you say its extremely subtle and hardly noticeable. I presented this theory to my MS Specialist who completely disagreed with my PPMS but said I'm probably in a transitional state to Secondary Progressive. I'd say I've been in the latter for quite some time I think.
Thanks again for your explanation Laura.
Kind Regards - Neil.
See if there is a clinical trial in your city or state for the disease.
I hear you. It took me 30 years to get diagnosed with ms. Now that I have... I’m already in the progressive stage. I’m waiting to see if they concede to that.
Hello Krystal, wow 30 years is a long time to wait for answers. I don’t think I’ve ever been RRMS as I’ve never really remitted, I’m always a progressive downward slope never returning to my baseline (like yourself?). Not sure if you’ve seen any of my more recent videos but I feel my diagnosis is up in the air now. It will be interesting to see if they do concede, and admit after all those years they were wrong about your illness.
Thanks for your opinion
Getting worried watching this. The idea of having possible MS is bad enough, but Progressive sounds worse. I'm 40. I did have leg weakness/numbness years ago and it cleared up after months, completely. Now it came gradual and kept going. I do have some lesions on my brain but doc said it could be from anything. I have multiple ones on my spine. Receptionist said the neuro usually doesn't call if the results are GOOD news, but from the results I saw on my online chart, it can't be good. I'm kind of afraid I'll go to my appointment next month and be told it's nothing, which would make NO sense. But then I don't want it to be MS. Or anything worse! Aaaaaaaaah!
When your chest hurts, is it a constant pain? Or throbbing (on and off)? I can't even imagine that! I get the occasional full-body build-up....like you know how your legs do that build-up to a spasm or whatever and you gotta stretch it (whether you want to or not)? My whole body has to do that and my abdominal muscles join in.
I know this is an old video but some times I get caught up in the story and have to comment.
Hi Lisa, The most common 'flavour' of MS is Relapsing Remitting MS and like an awful lot of other people I was diagnosed with this EVEN THOUGH I've felt I never quite fitted the criteria. Who are we to argue with the Dr's though, they know best right? (I often don't think think so). I'm a very analytical person and I do my own research which is available in abundance online, and I feel I've been Secondary Progress for considerably longer than they do. In fact I tick the majority of the criteria for Primary Progressive, as this often doesn't start until you're in your 40's and primarily effect the legs (ME!), but when I mentioned this it's as if they weren't listening and didn't take me seriously, they're the Dr's they know best!! Grrr.
I totally understand, of course you don't want it to be an MS diagnosis but like you say you're trying to make sense of all the symptoms. If nothing shows up, you might have to say bluntly how do you explain all of your symptoms then! Possibly even look for a second opinion.
My chest is a continuous pain like somebody is pushing down on it.. it never goes completely only reduces in severity. It comes on when I lift both of my arms like to type on a keyboard, for example, I'm typing this reply to you and the pain in my chest has ramped up to about a four/five, there are other triggers also which antagonise it. My theory is the MS has effected the intercostal muscles in my chest which join the ribs to the sternum, they are no longer functioning 100% and are weak as a result. I just have to live with it, no Dr can explain it but to me it's sometimes the worst pain I've ever experienced.
Glad you're enjoying the videos,
Regards,
Neil.
I'm a passive person so I'll probably say "That doesn't sound right" once and then drop it if the doc says otherwise. Though I am glad I didn't keep giving in to my primary and begged to see someone else about it all or I'd still be trying to get better with losing weight and working out.
I'm sorry about your chest! That sounds awful. I know "they" say keep exercising to strengthen the muscles, but it's hard to when it causes so much pain. Do any of your docs have any helpful input for that or are you just having to tolerate it the best you can?
Thanks Lisa, exercise tends to make it worse.. besides I literally cannot exercise now as I’m too disabled. The Dr’s just blame the MS, I have that label now.. I could have little finger ache and it will be the MS.
I was told I have RRMS but I don't think that I am RRMS. I believe that I have changed to SPMS. I have numbness around my chest from all the spine lesions. I also have almost no feeling in my feet and what I do have is painful. My eyes have been effected and I have a lot of lesions on my brain as well. Which are effecting my train of thought and cognitive state. My MS made my vitimn D lvl so low that my spine is that of someone in their 70's. Your chest pain is a lesion is a spine lesion. It is lovingly called the MS Hug because it feels like your being Huged really tight.
Hi Jessica, thanks for the comment. I've read a lot about Vit D having a positive effect in people with MS. I've got some on order, so will be interesting to see. So very sorry to hear of the problems your MS is causing you, I do understand.. I believe my MS has always being Secondary or Primary, I've only ever had two major relapses in ten years. I'm not so sure it's the hug, I get the "squeezing" on my thighs, but my chest doesn't feel like this. It's more muscular pain. I hope your managing your condition and coping ok with it. Take care.
Oh ok I have had far more attacks than two. I have lots of areas on my body that will never fully heal. I Been out of work twice for six weeks or more. An ones that I have working through. I have one to two big major relapses a year. I live in the USA (Texas) and they don't like to put anyone on Disability even though lots of people beleive that I should be disabled. I don't like the doctors here because they treat MS as a common cold ....they always say your will get better it will be ok but I know that I am not getting to get better I am only getting worse.
Hi Jessica, it does sound like your still in the relapsing remitting stage of the condition. In Secondary, the relapses slow down considerably and mobility very slowly and subtly gets worse over a long period of time.
I've been in touch with so many people via comments on my channel that say they live in the states also, and they feel the Dr's just don't take them seriously. This must be very difficult for you.
I'm sorry you are getting worse, it's a hard thing to try and digest isn't it. Just lately I feel the same. I recently watched a home video of me taken almost three years ago. I can easily see how my disability has progressed in this time when comparing to current day. But it creeps up on you so slowly, quite depressing really.. it's been playing on my mind a lot.
Neil Bradley I do have a steady decreased over time but I have relapses that makes my everyday symptoms worse
I know what you mean.. I have flare ups of existing symptoms, but no new symptoms. When I've tried to explain this to my Neuro she seems to think these are relapses. But a relapse isn't defined in this way, a relapse is new symptoms. So we have this disagreement. I've researched the different "flavours" of MS quite considerably and I actually pretty much tick all the boxes of the Primary Progressive.. but once again my Neuro says not. But I know my own body, and I know I'm not relapses but I can see a steady and sure decline in my mobility.
They change their mind on me to. Thanks for the update. Hang in there :-)
Hi Christine, really! So were you Relapsing Remitting and moved to Secondary Progressive?.. Take Care.
I have a rare disease that similar to MS. I have got a butt load of other problems that I have overcome. There is more on my home page. I tried all the drugs anyway nothing works better than therapy. For me Heat works I need to live in another state South.Some more dryer And hot. Sounds like living hell on earth sorry I am in pain today.
+Christine Davidson Nahh you're not a pain at all, we all have bad days. Sounds like you've got your fair share of things to content with, I'll make sure I check out some of your videos. Take care Christine, and I hope things improve for you. Regards Neil.
thanks for sharing
I totally forgot you had ur appointment today sorry. I had a bad day weds and I'm having a bad day today.
I'm surprised age didn't offer to do an mri or x ray on ur chest to underline the problem.
Hi Nicola, I've not had an MRI but I've had just about every other test you can think of with regard to my chest pain and it all comes back as negative and ok. So, it is looking as if it is MS related and I'm beginning to come around to that way of thinking as well.
Really sorry to hear the goods day seem to be few and far between for you at the moment, lets hope this trend will change for you very soon. Take Care.
Neil, is the pain in your chest like the MS hug? Or is it something different? I ask because I also have quite a bit of chest pain. Thank you.
Hi Cindy.
The pain in my chest is a bit of a mystery to be honest, it never goes away.. it only calms down and gets angry depending on how random its feeling.
I don't actually feel it is the MS hug, because I understand the MS hug to be a squeezing type sensation where as this is a full on intense dull throbbing pain. I get the squeezing sensation just above both my knees, and it is very intense so I know what this feels like and its very different to the pain in my chest. My MS specialist says its 'classic' MS but I beg to differ.
As you'll no doubt agree, any kind of pain in the chest is very important to get checked out no matter how small. You never know when it could lead to something very serious, I had all the tests done which came back clear.
I will just say also, the MS Hug from the research I've done myself does come in various different forms and therefore it could well be the hug. Whenever I've mentioned it to a Doctor or MS person at the hospital, they never really seem to know much about the hug. I know more about it myself!
I hope that helps Cindy.
Regards - Neil.
I am with you
I don't think I ever had rrms
I've never had any improvement
since symptoms started in 2002
my legs gradually got weaker and weaker
til now in a wheelchair
full time
my consultant said he's sure I started with rrms but now have spms
I don't believe him
I feel like I'm not being listened to
the chest pain in awful
I have it every time I breathe and eat
it agree with you that it could be the muscles
as for my eye sight
I started with optic neuritis in 2003
and now Am registered partially sighted (2013)
as have bi lateral optic atrophy
I was never offered or given any dmds as they said they wouldn't help me
so if I had rrms then why was I never given them
the latest thing to change is my taste
most things taste like when you put your tongue on a 9v battery
So am now eating plain bland food
I mentioned this to my consultant and he said it's very rare so more than likely not to do with Ms but gave me no other answer
he has retired now and I see a new one this year he's written papers about ms
so hopefully get some better answers
please take care and remember you're not alone with feeling like the Dr's just don't listen or understand your symptoms
Hi there.
Sounds like your right, the definition of RRMS is you Relapse but then it should follow by remission (remitting) after a period of time.
I'm terribly sorry to hear you need a wheel chair, this must be massive for you and very life changing. Like you I suffer terribly with my legs, and lower back.. but there is a connection, when my back is painful and sore, my legs are worse. I feel this is significant.
The majority of MS cases start with RRMS and 60% then become SPMS, your consultant could possibly have been recalling statistics. Only you know yourself how the condition started and has progressed. I quite often feel Dr's just don't listen, my Neuro says I'm relapsing on a regular basis but I disagree with her. It's just my existing symptoms flaring up, but she feels she's right and I'm just left feeling I've not been properly listened too. All we can do is but try I suppose.
Totally get you about the chest pain, even as I'm typing this message to you my chest pain is about six out of ten (pretty bad). NOTHING TOUCHES IT! The pain is BAD!!
The eye sight issues don't sound like fun at all, I'm sorry your having to have to cope with this. The taste symptoms is one I've never experienced either. Having said that I've only got lesions on my spinal cord and no brain lesions. I believe it's the latter which cause these.
Good luck with your new Dr, hopefully you'll be able to glean some useful information out of them.
Thank you for writing to me, it's very nice to hear from you.
Best regards - Neil.
To comment on that video. I wonder sometimes if im in secondary progressive. I have no new lesions, and as i remember the conversation, no spinal cord lesions. I was told by ms doctor that 75 percent of patients do not have spinal cord lesions. My symptoms are not going away. My doc doesnt believe im not in any transitional stage which is very frustrating. The paun in your chest and your legs may be what they call an ms hug. Please research that. I used to get that in my stomach. I take that med for my legs it works great however i can only take it at night because it can make your balance worse when your awake. I too do not like to b on drugs fir anything but i was told it will help my quality of life, what quality was my thought. It works different for everyone but i researched the drug tysabri in depth and it will not help any progressive ms. So if this is a transitional phase my drug will not do me any good. The steroids work wonders more then the actual ms drug. Sorry for the long text. Look up ms hug you might find the answer to your chest pain. Take care. Would like to speak in more depth with you. We seem to have much in common. Take care Neil.
Secondary progressive seems to kick in several years later, I've been having symptoms since 2007 but I've had no new symptoms for 3-4 years now. I actually think I fit the bill of Primary Progressive more the Secondary because I only have Spinal Cord Lesion (no brain lesions), I was over 40 when diagnose, I have considerable walking difficulties and all of these symptoms are classic of PPMS. I find you have to do a lot of your own home work and present it to your Neurologist and tell them exactly what you think.
I have been researching the pain in my chest and I'm beginning to rest at the opinion that it is the MS Hug even though my symptoms don't feel classic like the squeezing effect. The pain is more like somebody is pressing HARD right in the centre of my centre, it then radiates outwards down my ribs. I'm just a mystery lol. So what did the pain in your stomach feel like?
Is the drug you take call Baclofen by any chance, I'm interested to know as I'm always worried about side effect. I've recently been prescribed this by the hospital bit I'm reluctant to start taking it.
The steroids are very good aren't they, I've only ever had one infusion.. they don't seem to want to offer me anymore. When I had them before they did me the power of good, but I have to be relapsing to have them.. and that's the thing, I'm not relapsing.
Please don't worry about the long response, I tend not to do 'brief' myself lol.. Yes lovely to chat to you any time Teresa. You take care also.
Hi Neil im confused, I have symptoms of Rrms and Spms my gp, nurses, consultants, Occ therapist, physio say they cant stabilise me, my Ms just decided one day that it would like to stay with me everyday and give me no 2 days ever the same again, ive asked if I have Spms and they think not and im on an absolute SH#t load of pills including, painkillers, muscle relaxers, depression anxiety stress, sleep, beta blockers, rebif injections, im on near full dose on quite a few, so all these im told I should either be asleep alot or like a zombie in lal la land, so why am I awake 2days in a row wide awake still have pain and all these other problems, never been given steroids for any relapses, I rattle like a box of tictacs and I feel absolutely no different than I did before all the meds, I keep saying this to doctors and nurses and I get more pills, I hate pills id go days with headaches rather than take a pill and now im bursting with the stuff oh and omeprazole to help with the pills cos I feel like im drowning in acid, not to mention the extra vitamins too, does anybody know if it is possible to be immune to every pill given to you? I just feel there is something not right I know my doctors find me puzzling im alergic to grass, dust and cats, I have grass in my garden tons of dust and 5 cats how am I still standing,? do I have some strange super power?, it makes me rather paranoid, Neil! your thoughts please lol, keep well, same to your lovely wife and Molly of course,
Sue x
Hi Sue 5 Cats,
Well, I went through a similar thing with regards to the RRMS and SPMS.. Looks like you've already watched the video, I tried to tell my Neuro I'd not relapse for years but she wasn't convinced. She was thinking my flare-up were relapses, and I tried to tell her they weren't.. they were my "trend". A relapse is new symptoms that you've not had before. My symptoms just "Progressively" get worse, hence the Secondary Progressive MS they think I'm now transitioning too.
You are indeed on a lot of medication, its hard to say but I know that the body builds up a tolerance to certain medications and renders them, well shall we say not so effective. You may want to raise this with your Doctor. I hate the side effects of medication, and it takes a lot for me to take a new drug.
Neil.
Hi, I wondered what the other medication you couldn't remember the name of could be, the way you describe it sounded like it could be Gabapentin? I've been med free since diagnosis eight years ago but have just started a few medications for the nerve pain/fatigue, and they have helped with little or no side effects. As you say, I'm not a big fan of medications and side effects.
Hi Tommy, thanks for the comment and for watching my video :) The medication my MS Specialist mentioned was one that I'm not sure I could even pronounce, never mind about even spell LOL (I'll find out when I get my hospital letter) .. No, it wasn't Gabapentin as I'm familiar with that one.
Nope, I'm definitely not a fan of medication because of the side effects. Pregabalin which I take 75mg of at night to help with burning and nerve pain, is in fact the big brother to Gabapentin. Really good that you are able to take some meds without side effects, I've found as long as the dosage is low and you achieve a nice balance between meds and pain, then it works well.
Take it easy Tommy, Regards - Neil.
Oh and of late holding things - my hands feel weaker and worse for me - playing guitar is harder than it used to be...
Hmmm, that's not good Trev especially if it's interfering with your music. For me, to compare.. my hands aren't bad but they do go very red and burn. Also my finger tips feel as if they have been pumped up, if that makes any sense at all.
Neil how are you and your wife? Hope you are doing okay
Hi there Shelly, thanks for the check in. We are plodding along thanks. Having said that , Teresa has got an extremely painful trapped nerve sending all sorts of tingling and pain down her arm. The pain is relentless, slowly we are trying to get it sorted though. I hope all is well with yourself. 🙏
@@NeilBradleyMS it was so nice hearing from you 😘 tell Teresa hello
@shellyburnett63 And you of course! Teresa says “Hi” 🙏😊
Hopefully ur pain will start to subside Neil. I'm just a text away friend if you want to chat !!
Cheers Kevin, to be honest I've learned to manage the chest pain really well and I know what to do if its really bad.. could just really do without it if you know what I mean! It's quite literally, a pain :)
carbamazepine or tegretol is the one you are trying to think of
Hey Debra, thanks for your message.. Yes, pretty sure it was "carbamazepine". I hope you are well, and Happy New Year to you.
Carbamazepine is the generic for tegretol. Thank you for answering! What a surprise.
I was dx in 2014 at 50. I am now 54. I would say that I have progressed very fast.
I believe I am secondary progressive or maybe even primary progressive, but you know how doctors don't want to nail it down.
He said I have a lot of damage and old damage. When I asked him if I have one or two black holes, he said, "The whole thing."
Whoa. I always thought something was unusual, and didn't see others seem to struggle like me.
I was dx in one day only because they close after 5 pm. It was less and probably the first second he laid eyes on my first MRI.
How can I even half way function then? How can I type this on my phone?
I have learned a lot from you.
I thank you for that.
Hi Debra - When I look at all the symptoms online for Primary Progressive I feel I fit those perfectly to be honest, every tick box almost. Where as I've always felt I was never RRMS because I never got new symptoms and then got better, my mobility would always continue to get worse. Unlike a lot of people with RRMS I can't go to the Gym or out for the jog, heck I can't even jog on the spot!! Like you though I know what its like trying to convince the Dr's. Good to hear from you Debra, thank you for writing back and I'm pleased my videos have helped you in someway - Neil.
What difference does it makes what it's specifically called??? Are the meds different or will you be able to do things differently if you find out what it's called? Just go on and do what is needed and live positively about your life!
Thank you Christine, I see where you're coming from. Nevertheless, there are different stages and types of MS. This particular video is quite old now, in some of my more recent videos you will see that my MS diagnosis now has a question mark over it. I'm waiting on the results of a Spinal Tap to see re-affirm my MS diagnosis (I was diagnosed in 2013), to then hopefully proceed with some treatment. Thank you for all of your messages Christine.
Hi Neil
I am exactly in the same case.
Do you have treatment for your SPMS?
In France, there is NOTHING...
Thank you for your answer.
Jérôme
Hi Jerome,
Thanks for your comment. There is no treatment available that I know of, although if you are still having relapses but just less frequent, I believe the hospitals in the U.K will still offer DMT (Disease Modifying Treatment).
I hope you're managing things ok Jerome.
Take care.
Neil.
Thank you Neil
Where not alone...
The only treatment they give me is 1 gr of steroids per month....
That's very important to remember, "You are NOT alone" there are plenty of us out here dealing with the same thing, albeit in different ways. No person with MS is the same, but we can all relate to each other that is for sure.
Are you still relapsing, Or do you have steady progression of existing symptoms?
my daughter and i are one day apart on bdays in oct
Ok, so this is now getting extremely "weird" lol.. you'll never guess what.. My Wife and I have birthdays, yes you guessed it 1 day apart!!!!! 9th and 10th of September, the latter being myself. As you say the connections are unbelievable, I'm just reading these comments to my other half as well.. amazing!!
i used too walk 3 miles a day
Hi Dee Dee, thank you for watching so many of my videos and commenting. I too used to walk 3 - 4 miles a day on my lunch break. Where I worked there was a park and lake nearby, it was so beautiful. I miss doing this terribly, it makes me feel so sad when I think about it. I bet it’s the same for you Dee Dee.
how funny. My daughters married name is Bradley and my name is Teresa. lol. Connections, they are everywhere.
Indeed they are Teresa, and here is another connection for you.. Teresa is also my Wife's name "Teresa Bradley" lol hows that for you :)
Are you on this site
www.mymsteam.com I'm over here www.mymsteam.com/users/RobWelsh
I appreciate hearing MS stories from the UK and Canada, or almost any English speaking people that has a better healthcare system than the United States.
So yes, relapse-remitting is different than full-on progressive in the way stage two cancer is different than stage four cancer, but they are the same disease. Of course, this is going to be a psychiatric disease too because our physical senses are all jacked up. That requires switching from being human to something else. Personally, I've decided to stay away from drugs as much as possible.
Hello Robert, and thanks for the comment. No, I'm not on the site you mentioned.. it's not that I'm not interested because I am, but running this channel and catching up with comments takes up quite a bit of my time already so I'm not taking anything else on at the moment. I tried clicking the link to see your profile, but its private and therefore would require an account to log in.
Yep, the same disease but with subtle different characteristics and behaviour.. I also try to keep away from drugs as the side effects worry me, I've reduced the drug I take (Pregabalin) down to 75mg at night only, and this enables me to sleep reasonably without pain - although not last night :(
Take care - Neil.
Thanks for the reply Neil. Some of the MS websites can get depressing. Who needs that?
No problem Robert.. yeah I suppose they can. I quite often turn to the Forums when I'm researching a specific aspect of MS. I've found the MS Society Forums especially informative and helpful. There's always somebody that has real life experience of some MS Symptom or other. Regards - Neil.
I like it, but many MS patients there are pain drug addicts. I do like to see developments in patients from CA and UK.
Your knees were swollen in pain
My knees no longer work properly. They lock and unlock randomly. I have to walk with my knees bent simply because there is no longer any control. They bang backwards and hurt if I’m not careful.
I saw a notification from you asking if I’m on Facebook, but for some reason can no longer find the message. I am on Facebook, and if you wish to seek me out search for “neil.bradley.37”.
HSCT NEIL MY BROTHER H.S.C.T!
Hey there, Hematopoietic stem cell transplantation remains a dangerous procedure with many possible complications; it is reserved for patients with life-threatening diseases. I think to even consider it your quality of life has to be seriously compromised. At this moment in time, I'm probably going to pass on it. Appreciate your comment though, regards Neil.
how funny. lol
Neil I've just listened to your story and bud I'm you! I have the exact same issues that your having I'm 45 and was diagnosed in 1999 with RRMS and I to think I'm entering the SPMS phase of the disease. I have the pain in my chest just under my left rib cage and pain in my lower back. I have been taking Baclofen for years for my restless leg and it does help me relax enough to fall asleep but I wake up most mornings legs stiff and in pain. I too think I have spinal lesions but my nero doesn't feel the need for an mri on my spine. stupid! what I have been using recently is marijuana CBD strain (the strain that doesn't get you high)liquid form and that helps with my chest and back pain plus it does great on my anxiety. You might want to give it a try.
Cheers
Jay
Hello Jay.
I really appreciate you stopping by and watching my video.. I read your comment with interest. Fascinating! My MS Specialist seems to think I keep having small "relapses" but I beg to differ, I say they are just meer flare-ups and I know my own body better than she does. As far as I'm concerned I had my first major relapse in 2007 with the start of all of my symptoms, followed by another major relapse which left me with tons of disability in 2012. Since 2012, I've only had flare-ups of existing symptoms, I had absolutely no new symptoms at all.. only worsening of existing symptoms. I've been doing a lot of research into MS and the different 'Flavours' .. I'm a very analytical person and pay attention to detail, I even think I could possibly be Primary Progressive, but once again my MS specialist disagrees, but she does think I'm transitioning to SPMS. At the end of the day I realise we have to seek their "professional" opinion but we don't necessarily have to agree with it.
I felt very strongly that its very important we have the correct diagnosis, and I was absolutely positive I wasn't relapsing, then remitting (my symptoms calming down and going into remission) this simply was not happening to me. Have you considered approaching your MS Dr and explaining to them you've done your own research etc and you feel you're not SPMS?
Interesting you have the same pain in your chest.. the pain in my chest starts in the centre (Sternum) and radiates down the inside of my ribs, I really just don't know what it is to be honest.. I don't think its the MS hug because its not a squeezing sensation, its more of an intense throbbing/stabbing pain.. when it ramps up I can hardly function its so painful.
Oh the lower back pain.. excruciating isn't it Jay? I'm having a terrible time sleeping at the moment.. I've been lying on my back in bed for as long as I can remember. All of a sudden if I lay on my bed, legs out straight, within a few minutes the bottom of my back starts to really hurt, this then ramps up the pains in my legs particularly the BURNING nerve pain. Last night for example I was awake every hour, sitting on the side of my bed because I was in so much pain and couldn't sleep.. I'm so tired of it all, I really am. I've had a few nights like this, and they catch up with you eventually.
I've actually been prescribe Baclofen, and I've got the drug in my house but I've not taken it for the simple reason I worry so much about the side effect. But I really am beginning to feel I need something to help me sleep and no word of a lie I've been considering taking one for the last few days. The fact you say it makes you relax is encouraging, because I really do need something to help me sleep at the moment.
Apologies for the long reply Jay, once again I really appreciate your comments and you sharing your story.
Regards - Neil.