Multiple Sclerosis - Looks like I'm having a RELAPSE
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- Опубликовано: 6 сен 2024
- Multiple Sclerosis (MS) - Relapse
(VIDEO 22)
Well guys, for those of you who are up-to-date with my videos you will know that I've not been having a great time just lately. I have the odd good day, but on the whole a lot of bad days.
Came to the crunch today (24.01.2017) when I could hardly put one foot in front of the other, so I decided to contact my MS Nurse. I explained what had been going on and she said it sounds very much like I'm having a relapse.
My last major relapse was in Feb 2012.
flare up | steroids | methylprednisolone | anxiety | disability
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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.
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Don't forget to check out the other videos in my MS Vlog Playlist.
• (MS) My Life with Mult...
Neil, stay strong brother. I recently went back to the neurologist for a follow up and apparently my left foot drop had regained some of its strength, so that was a good report card I received recently. Still, I know there are many others out there that are struggling, so just know that watching your videos is a good help to those that may not know how to cope with their symptoms, much less articulate what they're feeling into words. Get better soon!
Hey Steve.. great news about your foot, and it does give you some hope that you are slowly regaining your strength and moving in a positive direction. I'm pleased for you.
Thanks for the kind words Steve, Yes I think it really important not only to do videos about certains subjects and how to cope with them, but also real life footage about how MS effects me on a daily basis.
Cheers Steve, I hope you continue to improve.
Neil.
Good luck on your steroids. I have now listened to all your posts to date. I tried cannabis this past week and the constant pain in my feet was not as severe and I was able to sleep for hours. It seems to stop immediately and has since returned at full strength. I have another doctor report where i get my results of circulation. They are also going to talk about aortic aneurysm. This brings new light to the late 1990s. I took Phen Phen which caused heart problems in many. This would be a delayed symptom and if i have one will cause much legal uprising. This same time period is also when I started to notice what are my MS symptoms. 1997.
Hi Gil,
Thank you, I will no doubt do a small video serious to let you and everybody else know how I'm getting on.
Really, every video!! no way .. wow I'm so very pleased thank you. Yes, there is a lot of people saying how much better they feel after taking Cannabis.. I'm so pleased you got a break from the pain and were able to sleep, brilliant.. there's definitely got to be something positive there if its had an effect on your pain. I need to do a bit more research in this area.
An Aortic Aneurysm (try typing that when you've had a glass or few lol) .. this is interesting because my Dad a few years ago had an AAA (Abdominal Aortic Aneurysm) and he's had a stent fitted, he's right as rain now though. Do you have the start of an Aortic Aneurysm then Gil?
Make you wonder if when you were taking PhenPhen this could perhaps have been maybe a side effect, its does make you wonder how MS is trigger doesn't it. I started to have my very first symptoms in 2007 when I started going through a very difficult separation.
Regards - Neil.
Keeping you and your wife in my prayers.
Thank you Cindy, that's very kind of you.. I've also passed on this message to my wife.
Hoping this message finds you well.
Neil.
Yes I have been on Copaxone and Aubagio. I had severe reactions to both. I also have an appointment in February to see my MS specialist and I need to choose between Tecfidera and Gilenya. I have seen that Orcilizamab has been approved for Secondary MS. I truly hope that for you and your families sake that you don't have Progressive MS. Best Wishes.
Hi Nordonna,
So you you need to do some thinking between now and Feb, good luck with that and I'm sure you'll make the right decision. It's funny you should say that about the Progressive MS (well not funny) because I did a lot of research between the three different type RRMS, SPMS and PPMS .. and I it was quite scary because I felt I fitted the criteria of Progressive more so than Secondary and I don't believe its ever been RRMS. I actually presented this to my MS Specialist who said she didn't feel this was the case at all.. but I still feel that it is.
If you check out this link, I felt then and still do that I fit the bill completely.. symptoms get worse over time rather than sudden attacks, starts with subtle problem walking (oh yes so much), symptoms just continue to get worse over time (Definitely), but this was the key one.. not diagnosed until later in their 40's and 50's .. I was in my 40's!! When doing my research the PPMS 'flavour' fitted my symptoms like a jigsaw, but we have to go with what the Doctors say don't we.
www.mssociety.org.uk/what-is-ms/types-of-ms/primary-progressive-ppms
I´m really sorry to hear about the relapse, but many thumbs up for you calling the MS nurse about it! It sounds like that was a very good decision and I am crossing all fingers and toes that the steroids will help you. I am quite interested to hear how the steroid treatment will feel this time. I haven´t tried it yet myself, so I am scared shitless about the thought of it, but it helps that you and others share your experiences.
Many good thoughts coming your way!
Thanks Rikke,
You know what I'm like with drugs, I don't like taking them at all.. but to be honest with you I've gotten to the stage where I'm beginning not to care. I'm actually looking forward to having a dose of Steroids because I recall how they really helped me last time. I really need a break from it all
I will of course document how they make me feel in a video. :)
Take care - Neil.
nor donna, I have only been on Copaxone and Tecfidera, Tecfidera worked great for me, too well, to where my white blood cell count was too low and then I was on Copaxone and had a bad reaction to that. Right now I am not on any ms medications. And hang in there Neil, glad to hear that you have a great medical staff on board with you.
Hey Jamie,
Thank you for that, very interesting to hear about your time on Disease Modifying Drugs. A lot of them work by reducing the immune system response don't they, because that's what they think causes the MS attacks. Unfortunately that can cause a lot of other issues. How are you feeling Jamie whilst off your medications, have you had any recent relapses?
Yes, I'm very lucky to have pretty good staff on hand whenever I feel the need to contact them. Mind you I'm having to wait a week before I can go to an appointment, so that isn't so good really.
Cheers! - Neil.
Like you said, I have my good days and bad days. It has always there and
then seems to get a bit better and then it is not. I have had a few
major relapses too, but interestingly enough my regiment is calcium and
b12 that I discovered helps me the best right now to alleviate most of
my symptoms even if my doctors don't agree with me. My major issue is
with random muscle spasms especially involving my hands.
Hi Jamie, thanks for your reply.. I'm taking Calcium and Magnesium but can't really say I've noticed any benefit just yet. Might try the B12 at some point, nothing really to loose. Yes, oh I know the feeling of getting a bit better, then back to where you started. frustrating isn't it. The spasms are a real pain aren't they, for me no real issue with upper body but my legs are really bad.
Take it easy - Neil.
Hope you get back on some Disease Modifying Medicine again too.
Hi Nordonna,
I was on Rebif but I didn't like the side effect, felt like I'd got a cold and it made my ears ring (Tinnitus? Horrible) .. then moved to Copaxone and stayed on this for a couple of years but stopped it because of the injection site reactions. Perhaps you've watched my video on this? There is the option of going on to DMD again, but they now think I'm in a transitional state to SPMS (Secondary Progressive MS) because I've not had a relapse since 2012 UNTIL NOW .. prior to this I've just had flare-ups etc. Chances are this relapse would definitely still have happened whether I was on DMD's or not.
So I don't think the DMD will help me really, and considering the side effects I think I'd prefer to stay away. When I meet with my MS Nurse on the 31st, no doubt she's going to try and get me back on them.
Are you currently on any DMD Nordonna?
Regards - Neil.
Really glad to hear you're seeing your MS nurse, Neil - the sooner you get some treatment, the better you will feel. Hope the steroids do there job swiftly for you. Hope you (and your wife) get on ok at the hospital. :) Oh and hello Molly, hope you're being a good girl! ;)
Hi Laura, and thank you. It's going to be a bit of a hectic day on the 31st, but I am in fact looking forward to seeing my MS Nurse.. if I'm honest I think its quite overdue and that is only down to me constantly putting it off. My Wife is having a small bone taken out of her thumb joint which has been causing her a ton of pain for years, the bone is arthritic. Molly is being a good girl, most of the time lol apart from when she's harassing me or doing her HOWLING in the middle of the night. Molly is very camera shy, when ever she sees the Camcorder she tends to bugger off in the other direction, very hard to get her on film.
Haha! I remember the late night howling... used to scare the bejesus out of me. And I feel your pain Molly, I too beat a hasty retreat anytime anyone whips out a camcorder! Luckily for all us cat fans, she lets you film her Neil, albeit for a short while. ;)
Ha ha Laura, she only let's me film her (as a rule) if she's hungry :) Like now actually, even as I type this message I'm being harassed.
lol Good old Molly! ;) Best of luck for your and your wife's hospital visit, Neil. :)
Thanks Laura, it was a pretty grueling day.. I'll be telling you all about it in my next video :)
i have had the steroid ivs but they didnt work. go figure the pills work better. im glad u will be getting relief. hugs.
Thank you Teresa, I'll take that on board.. I'd pretty much decided I wanted to have the pills anyway, but your comments are encouraging.
Im sorry you are struggling Neil. i am too having the heaviness again and have foot drop. I just had a round of steroids a week ago , just pills. didnt last long.
Hi Teresa.. I'm really sorry to hear about your problems caused by the MS.. drop foot is absolutely no fun is it and it can cause falls very easily if you're not careful. SO BE CAREFUL !! So the Steroids didn't have much of an effect with you Teresa, hmmm .. I was wondering if the IV Steroids are better than the Pill form, what do you think?
I'm opting for the pill form this time simply because to visit the hospital over three consecutive days would be quite a pain, if you know what I mean. However, I would do it if it meant a better recovery.
Regards - Neil.
What a bummer! It sounds like the steroids are the go and you will do well with them. I am SO in love with your Molly. My heart just opens when I see her. Please send your lovely wife my regards and I wish her well with her op. Speedy recovery vibes all round!
Hi Willo,
Yes indeed! I'm really hoping the steroids give me a bit of a break, I'm really beginning to tire of it all.
Thank you, yep Molly sure is the best.. we absolutely love her to bits.. she's sooooo pampered lol. Thank you WIllo for your good wishes to my wife, I surely will pass them on to her.
I hope you are well, nice to hear from you.
Neil.
it seems i have symptoms flare every other month
I know how you feel Teresa, to be honest my flare-ups don't seem to follow any particular trend apart from RANDOM!
Good luck Neil and I hope the steroids help.
Hi Jaime, and thank you for the encouragement.. it's very much appreciated. - Neil.
Hi Neil, how did your day go. Do you think its anything to do with the temperature outside? Molly loves the TV! They [NHS] are quite reluctant to offer steroids if you're in transition to a secondary progressive situation. Have you asked for an MRI or have you had one in the past two years?
Hi Terence.. Pretty sure its nothing to do with the temp outside, as a rule its usually the warmer weather when things "heat up" quite literally. I know what your saying about the Steroids, fingers crossed though, I really could do with a break.. In fact when RRMS moves into the SPMS stage, I'm pretty sure they don't offer you Disease Modifying Drugs either simply because they don't have much effect. Yes, actually when I spoke to my MS Nurse on the phone I queried why I'd not had a scan for such a long time (since 2013) and she said something like it was because they can usually tell by the patients symptoms if they are relapsing or not. I'm not convinced, I would in fact like to have a scan for comparisons to my previous scan, I've only got Spinal cord lesions.
Enjoyed watching your videos yesterday, looking forward to the next installment. Keep up the good work :)
Hi Neil.
You messaged me yesterday but I can't find it now (I'm not great on here) I will buy some magnesium...please remind me what strength?
I have constant pins and needles which appear to be permanent.
I am supposed to start DMD'S in May....due to staff shortage!
I hope your relapse has calmed
Julie
xx
Good morning Julie,
No problem at all, the message I sent you was on a different Video "#18 Multiple Sclerosis - Severe Pain".. RUclips comment system isn't the easiest to get your head around, please don't worry. I've done a copied my original comment to you below.
The pins and needles would drive me insane, I'm sorry you're having to deal with this Julie.. I have a lot of numbness and tightness which isn't particularly good this morning. But I've also got a chesty bug of sorts which I'm pretty sure will be exacerbating my MS symptoms.
Good luck with the DMD's, and not good that you've got to wait so long.. somebody with your condition certainly shouldn't have to. Sign of the times I suppose, hang in there Julie.. lovely to hear from you and please feel free to pop back any time for a chat.
Here is the original message:
Hi Julie,
I'm sorry to hear this, night times for me are just the worst time ever for pains in my legs. How are you at night, do you feel your legs get even angrier? I also take Pregabalin.
Something you may want to consider is a supplement called Magnesium.. I used to get this strange thing whereby my right leg would have this strange sensation building up and then it would kick out uncontrollably. I actually made a video on it, "Strange new symptom". I was chatting to a subscriber not long ago who also suffered with the same strange leg symptom. However they said since taking Magnesium the "kicking out" has stopped.. this is when I realised it had also done for me ! Comments from other people have also called this Restless Leg, which is why I thought it might be beneficial to mention it to you.
The exact supplement I take is Calcium (500mg) & Magnesium (250mg) in a single tablet.
Regards - Neil.
Thank you Neil xx
You're welcome, give the supplements chance to get into your system and hopefully you'll see some improvement. Take care xx
Hi
Hi :)
let me know how the steroid work for you
I sure will.. probably by way of another video :)
steroids are fantastic!
Ahh, thanks for that Teresa.. that definitely give me some encouragement.. hopefully I should be making a video about how I'm feeling before and after the Steroid. Is it possible to look forward to such a thing lol .. I just want a break from all these symptoms and possibly be able to walk a little bit normally. (I can always hope)