Possible relapse

[marti]

I went off Copaxone about ten years ago. I have been doing very well and the last neuro I had thought things had reached a kind of "burn out". I went thru a lot of stress when my husband was sick and dying. But since then I've been much better. I started having widespread pain about 3 weeks ago. Finally went to my primary and she suggested that this could be a relapse and offered steroids. I turned that down for now. I don't have a neuro right now. Mine retired a couple years ago and I have felt so much better that I just didn't look for a new one. My primary offered to get me in with a new neuro, but I declined for now because of transportation issues. Driving is not my best talent. Still get off balance and don't concentrate very well in that activity.

Anyway, I wonder if anyone could give me a picture of your relapses... signs, symptoms, things like that. For years I had some fuzzy "relapses" where the neuro was never sure if they actually were relapses or just progression. But I'm actually pretty good. My mri's are usually the same old stuff. Nothing new. The last one was a few years ago.

I'm not here to whine about pain or odd stuff. Just want some guidelines. We are going to do a round of Physical Therapy first. This worked for me a few years ago. I am not on any MS meds. Once in awhile a little Baclofen.

I was actually kind of surprised that my doctor's first thought was ... Relapse. I never thought of that. I am totally exhausted every day of my life and still have some dizziness, but not as much as before. I'm walking well, but can't do the straight line test. I guess you call it some kind of balance test.

Thanks if you can help me. I just have to get my head around this before I make any decisions.

[pennstater]

I am usually in the camp of not blaming MS until other things ruled out. Has your primary conducted a physical and have you had blood work to rule out any other issues? Is your anxiety/depression well controlled?

Can your primary order an MRI for you to see if any changes? I would not take steroids until other possibilities ruled out, but that is just me. I have taken them in the past when clear cut relapses - but steroids are no fun either. For me, it was usually vertigo accompanied by L'Hermites(shock down the spine when moved head), arm weakness and pain, inability to pick anything up with my hand, sometimes balance and depth perception issues). MRI usually confirmed relapse, where lesion lit up with contrast.

other possibilities not medically related, but how is your mattress? Do you get enough activity so not sore from inactivity? If balance is a concern, there are lots of movements you can do in a chair to stretch and strengthen arms and legs, as well as core.

Hope your pain goes away and you get relief with PT.

[REG53]

My relapses have been numbness in legs and torso, weakness and I had optic neuritis.
I hope you feel better and get some answers.

[Mamabug]

My relapses (I haven't had any for 8 years) were so atypical that my description won't help you in identifying whether that's what is going on with you. Mine generally started with manic thoughts and behavior and then sometimes progressed to problems with mobility, or, very occasionally, vision.

How discouraging it must be for you, to be looking at the possibility that this is a relapse, after so many years of none.

[palmtree]

MS is very different in each person. I haven’t had a relapse since 2010. There was no doubt for me. My balance went haywire, my right leg felt like it wasn’t there and I couldn’t swallow.

What strikes me about your post was that they stopped your copaxone and now you are feeling more symptoms. This affirms that you can never be too old for MS progression.
BTW, my legs are hurting a lot now too. Maybe a change of seasons?

[Jules A]

My relapses involved awful double vision and nystagmus which felt like my eyes were rolling around in my head. I tend to think of a relapse as something new, neurologic in nature, that comes on and lasts at least 24h. I don't know but hope you find answers and feel better.

[marti]

I am usually in the camp of not blaming MS until other things ruled out. Has your primary conducted a physical and have you had blood work to rule out any other issues? Is your anxiety/depression well controlled?

Can your primary order an MRI for you to see if any changes? I would not take steroids until other possibilities ruled out, but that is just me. I have taken them in the past when clear cut relapses - but steroids are no fun either. For me, it was usually vertigo accompanied by L'Hermites(shock down the spine when moved head), arm weakness and pain, inability to pick anything up with my hand, sometimes balance and depth perception issues). MRI usually confirmed relapse, where lesion lit up with contrast.

other possibilities not medically related, but how is your mattress? Do you get enough activity so not sore from inactivity? If balance is a concern, there are lots of movements you can do in a chair to stretch and strengthen arms and legs, as well as core.

Hope your pain goes away and you get relief with PT.

My primary did run blood work. Vit D is low again. My cholesterol is high again. Anxiety is somewhat better these days, although I always know when something is kicking in. I declined steroids. I've had a couple of better days... not quite as fatigued. But the Insomnia goes on and on. Mattress is good. It hasn't gotten a workout in many years... laughing. I try to walk every day, but I can only go about 20 minutes most of the time. It's a slow walk, not far. Sometimes my arms and legs get sore, but that's my usual. Thanks so much.

[marti]

MS is very different in each person. I haven’t had a relapse since 2010. There was no doubt for me. My balance went haywire, my right leg felt like it wasn’t there and I couldn’t swallow.

What strikes me about your post was that they stopped your copaxone and now you are feeling more symptoms. This affirms that you can never be too old for MS progression.
BTW, my legs are hurting a lot now too. Maybe a change of seasons?

The Copaxone started giving me some really odd reactions. After the shot I would be curled up a ball on the couch and shivering like crazy for about half an hour. I kept hitting a nerve after years of giving myself the shots. In my journey with MS I always had pains and weird symptoms... almost every day, for years. I could never really recognize a true relapse. Just constant dizziness and exhaustion and some pain and some tingling. Little things that didn't add up to much in my mind. Thanks for your input. This all helps.

[marti]

Thank you all for your posts. It all helps. Even us old timers need to hear the stories over and over. I'm not sure if I actually "burned out", but I believe I reached a plateau for a time. But now.. it's kind of starting again. You know how it is.. you go to the doctor and they rule out other things and can't find a good answer for symptoms so they label it MS.

[Pistachio]

I know this is an old thread but I'm curious about your cholesterol being high. Did it ever resolve? I just had a ton of bloodwork as prep for my first DMT (Mavenclad). I've been relatively stable and had a "mild" disease course until recently. Anyway, my cholesterol has always been good. But I had a relapse 2 months ago, went on high dose steroids for 5 days (2 months ago) and just saw my blood work. My cholesterol is through the roof.

The whole point of my post is to see if yours went down? I just read a few studies that say cholesterol can skyrocket during, and immediately after, a relapse. Did your neuro say anything about this being causative?

[marti]

I know this is an old thread but I'm curious about your cholesterol being high. Did it ever resolve? I just had a ton of bloodwork as prep for my first DMT (Mavenclad). I've been relatively stable and had a "mild" disease course until recently. Anyway, my cholesterol has always been good. But I had a relapse 2 months ago, went on high dose steroids for 5 days (2 months ago) and just saw my blood work. My cholesterol is through the roof.

The whole point of my post is to see if yours went down? I just read a few studies that say cholesterol can skyrocket during, and immediately after, a relapse. Did your neuro say anything about this being causative?

The last time I was tested it was still up somewhat. The doctor wanted me to start on meds, but so far I just haven't gotten around to it. Right now I'm having trouble with a low blood pressure. The diastolic is hanging around 55! So I'm kind of freaking out, but trying to stay positive. It's so hard to get an appointment with my primary and I won't meet my new neuro until Sept. Been waiting for that for a long time. Sorry I can't help you. But if your cholesterol is that high I would talk to the doc about it now. I'm still not sure if I am relapsing, but I suspect it. Hang in there and feel better!!