Hi Meredith How have you been feeling? Has the Methotrexate helped you at all? That may be the next step if Plaquenil doesn’t help me. Unfortunately I have Fibromyalgia also so it’s hard to tell because of the severe pain and fatigue I experience. I have so enjoyed all of your videos. You’re an Amazing women/wife/mommy/warrior! I receive encouragement from your determination to push through this debilitating illness. Thank you so much for being you! Hope y’all are having a fantastic summer! Blessings and Love to you and yours
I am loving your hair being pulled back. It looks FAB on you! Hang in there with the testing and the doctors. I’m in the Houston area and I have a wonderful rheumatologist and neurologist. They are fully aware of my diagnoses and they’ve treated me accordingly. They don’t give me any blank answers and they’re very thorough with any concerns I have. It also helps that they have an electric health system that sends out their plan of action/treatment to my PCP and pain management doctors and it keeps all doctors fully aware of their diagnosis/treatments as with my other specialist. Again, I do hope that they get to the bottom of things and continue to treat you accordingly so you can feel better. I also hope you find a suitable home for the family and continue to enjoy your vacations and with living life to fullest!🙏🏾🥰💞
Surviving as Mom Good hearing from you. I haven’t gotten any notifications from your channel and was concerned. So good to hear from you this morning. I do hope you’re starting your day off well.🙏🏾🥰💞
I have tried all the drugs, even Methotrexate. None of them was effective. Have you tried IVIG? I get through my day by taking the mild stimulant called Provigil. Here in California there is a shortage of good Rheumatologists.
I get everything you get. Exactly same symptoms. Numbness everywhere can’t feel much from waist down . Was tested for MS all negative. Got lip biopsy last month and it was Sjögren’s positive. It wasn’t as bad or painful as I expected and the lip is only slightly numb . Good luck with yours! I have been prescribed Hydroxychloroquine am really scared to take it because of the side effects. How did you find it starting Hydroxy? 💕
I’ve noticed when you cry you have actual tears. I have sjogrens and have no moisture at all in my eyes. I even had plugs in my tear ducts to help with moisture stay in my eyes. That didn’t work out. Stay positive
My dryness is a problem at night. Usually in the evening it starts and gets worse through the night. My mouth, throat, nose and eyes are completely dry when i wake during the night. I often wake up choking from the dryness, the inside of my nose cracks and bleeds and my eyes get stuck closed from the dryness.
I hope the biopsies go well! I had the lip biopsy and it was negative but they only tested 1 gland. Even my rheumy said it wasn’t optimal and I said I will not have another biopsy as a large area of my lower lip is partially numb. Did you have a Schirmer’s test? Mine came up as 2 and 4 when it should be 15. I had plugs put in my tear ducts. The test helped confirm that Sjogren’s symptoms were definitely present.
Hi Meri! We have the same name and I also go by Meri or Mere. I’m sorry that you’ve been experiencing a flare this long. Mine last about a week. I’m on Plaquenil and Prednisone. I was diagnosed with Sjogren’s in May 2018. I believe the Epstein Barr virus I had when I was 23 brought on the Sjogren’s. I am 45 now. This new diagnosis explains so much of how much I’ve been suffering. I don’t know how you do it with 4 kiddos. I don’t have any. Thanks for sharing your videos!
Meri, have you had your b12 and folate levels checked? I've had sjogrens symptoms now for around 3 years, primarily extremely dry mouth and eyes but i was also more fatigued for a good few years prior to that, and i find it hard to put on weight. Like you my bloods always show negative for sjogrens so as far as doctors are concerned I seem fine. In my experience I found supplementing with ubiquinol coq10 100mg very helpful for me, that helped a lot with my energy levels, and somewhat also with my dry mouth, i took this for a years or so although I don't take it at present. The biggest thing for me was when I had my b12 and folate levels checked, both were low, which was probably, partly at least, why I was so wiped out all the time, my b12 was in normal range but low end, but my folate was very low. I supplemented with the Thorne 5mg active form of folate (not the nasty folic acid stuff!) and very quickly I began feeling a lot better all round in my energy levels and fatigue. I still have the dry mouth and eyes but so far am able to manage this without meds. I don't know if you have heard of xylimelts also, I use those at night as my mouth is particularly dry then, they help a lot at night. I make sure I stay well clear of any fortified foods with folic acid added to them and just eat natural folate foods now.
Can Disney Cruises accommodate your dietary needs. I am going on a cruise soon and when I board I give a 3/4 typed page of things I can eat and can’t eat. I bring many copies and I give it out as needed. Good luck.
Disney in general is FANTASTIC with dietary issues. I never once felt nervous to eat anything or felt like a nuisance. The cruise was so accommodating to my needs. I always had an amazing selection of healthy and delicious foods. I recommend 100%!
Hi Meredith How have you been feeling? Has the Methotrexate helped you at all? That may be the next step if Plaquenil doesn’t help me. Unfortunately I have Fibromyalgia also so it’s hard to tell because of the severe pain and fatigue I experience. I have so enjoyed all of your videos. You’re an Amazing women/wife/mommy/warrior! I receive encouragement from your determination to push through this debilitating illness. Thank you so much for being you! Hope y’all are having a fantastic summer! Blessings and Love to you and yours
I am loving your hair being pulled back. It looks FAB on you! Hang in there with the testing and the doctors. I’m in the Houston area and I have a wonderful rheumatologist and neurologist. They are fully aware of my diagnoses and they’ve treated me accordingly. They don’t give me any blank answers and they’re very thorough with any concerns I have. It also helps that they have an electric health system that sends out their plan of action/treatment to my PCP and pain management doctors and it keeps all doctors fully aware of their diagnosis/treatments as with my other specialist. Again, I do hope that they get to the bottom of things and continue to treat you accordingly so you can feel better. I also hope you find a suitable home for the family and continue to enjoy your vacations and with living life to fullest!🙏🏾🥰💞
I'm happy that you have a great care team. That's so rare. Thank you so much 😊 ❤️
Surviving as Mom Good hearing from you. I haven’t gotten any notifications from your channel and was concerned. So good to hear from you this morning. I do hope you’re starting your day off well.🙏🏾🥰💞
Hi, can I ask what doctors you are currently seeing in Houston?
Ash Law Inbox me please at: eloise7600@gmail.com
Hope they get to the bottom of it. I have RA , I feel you!!!
I have tried all the drugs, even Methotrexate. None of them was effective. Have you tried IVIG? I get through my day by taking the mild stimulant called Provigil. Here in California there is a shortage of good Rheumatologists.
My doctor isn't ready to try IVIG. She said its not for me. I tried a stimulant but it made me very mean. Stay strong.
I get everything you get. Exactly same symptoms. Numbness everywhere can’t feel much from waist down . Was tested for MS all negative. Got lip biopsy last month and it was Sjögren’s positive. It wasn’t as bad or painful as I expected and the lip is only slightly numb . Good luck with yours!
I have been prescribed Hydroxychloroquine am really scared to take it because of the side effects. How did you find it starting Hydroxy? 💕
I’ve noticed when you cry you have actual tears. I have sjogrens and have no moisture at all in my eyes. I even had plugs in my tear ducts to help with moisture stay in my eyes. That didn’t work out. Stay positive
That's what I wondered too. Not doubting her diagnosis but at least the sicca-syndrome is not her main symptom.
My dryness is a problem at night. Usually in the evening it starts and gets worse through the night. My mouth, throat, nose and eyes are completely dry when i wake during the night. I often wake up choking from the dryness, the inside of my nose cracks and bleeds and my eyes get stuck closed from the dryness.
I hope the biopsies go well! I had the lip biopsy and it was negative but they only tested 1 gland. Even my rheumy said it wasn’t optimal and I said I will not have another biopsy as a large area of my lower lip is partially numb. Did you have a Schirmer’s test? Mine came up as 2 and 4 when it should be 15. I had plugs put in my tear ducts. The test helped confirm that Sjogren’s symptoms were definitely present.
Hi Meri! We have the same name and I also go by Meri or Mere. I’m sorry that you’ve been experiencing a flare this long. Mine last about a week. I’m on Plaquenil and Prednisone. I was diagnosed with Sjogren’s in May 2018. I believe the Epstein Barr virus I had when I was 23 brought on the Sjogren’s. I am 45 now. This new diagnosis explains so much of how much I’ve been suffering. I don’t know how you do it with 4 kiddos. I don’t have any. Thanks for sharing your videos!
Meri, have you had your b12 and folate levels checked? I've had sjogrens symptoms now for around 3 years, primarily extremely dry mouth and eyes but i was also more fatigued for a good few years prior to that, and i find it hard to put on weight. Like you my bloods always show negative for sjogrens so as far as doctors are concerned I seem fine. In my experience I found supplementing with ubiquinol coq10 100mg very helpful for me, that helped a lot with my energy levels, and somewhat also with my dry mouth, i took this for a years or so although I don't take it at present. The biggest thing for me was when I had my b12 and folate levels checked, both were low, which was probably, partly at least, why I was so wiped out all the time, my b12 was in normal range but low end, but my folate was very low. I supplemented with the Thorne 5mg active form of folate (not the nasty folic acid stuff!) and very quickly I began feeling a lot better all round in my energy levels and fatigue. I still have the dry mouth and eyes but so far am able to manage this without meds. I don't know if you have heard of xylimelts also, I use those at night as my mouth is particularly dry then, they help a lot at night. I make sure I stay well clear of any fortified foods with folic acid added to them and just eat natural folate foods now.
Wow! Your schedule is hectic!!! I have the same "let's try this see if it's work" phrase... 🙄 I get tired, literally, of being send here and there...
It is hard.
@@SurvivingasMom yes... it is... ♡
Can Disney Cruises accommodate your dietary needs. I am going on a cruise soon and when I board I give a 3/4 typed page of things I can eat and can’t eat. I bring many copies and I give it out as needed. Good luck.
Disney in general is FANTASTIC with dietary issues. I never once felt nervous to eat anything or felt like a nuisance. The cruise was so accommodating to my needs. I always had an amazing selection of healthy and delicious foods. I recommend 100%!
How big is your house?
1800 sq feet
What about ra?
The doctor doesn't think so because I don't have visible swelling.