Yesterday I had sever aching all over my body, it lasted most the day and was accompanied by pain. At one point it got pretty unbearable and I was getting worried. Mostly in my legs. Not the same on both sides but in both legs, as well as my arms. I've been feeling off since a Migraine I had the other day. I may just be under the weather as I have felt sick constantly for days, but the pains were weird and nothing like I have had before.
I am diagnosed with CIS and I try not to relate every problem I have like this being related to MS as it could quite easily be something else, but I can't help but have the thought cross my mind. I was actually hobbling about for the afternoon I was aching so much. I am pretty active and have very few problems. My initial attack involved only my spine. I tried to have a light run this morning and really struggled and ended up giving up, which I never do!
Has anyone had anything like this or does it just sound like something unrelated?
Thanks, but I know my neuro won't do anything unless I present with classic symptoms of an attack and lasting 24 hours. I'm feeling better today so I guess whatever it was is a little irrelevant now anyway!
Its never irrelevant, there is always a cause for what is going on. I also get that way if my allergies get to bad not sure if that applies to you. You should still get it checked out and see if there is something that caused it.
I don't know what the weather has been like across the pond but this time of year is always rough in Ohio, USA. Years ago I was diagnosed with fibromyalgia. I don't know if I still have it (or ever really did) but spring always catches me by surprise. I expect my joints to enjoy the end of deep freezing but the changes in temp and humidity and barometric pressure leave everything aching instead. It seems everyone around joins in the complaining if any one person starts.
Glad you are better today. Hope it stays that way.
We have a trail close to our home that spans four states. I walked and ran that trail for years. Long before I was dxed I noticed my running slowed...in fact slowed so much that I can remember so clearly the last time I ran and felt the wind blowing across my face. I thought I was just getting older. Eventually even walking I had to stop and take breaks....and yes, mine was in my spine, too.
A suggestion? I would find another neuro. I would find one that would put you on a DMD NOW. I wouldn't wait until the damage is done and it is too late to stop. From experience I can tell you...nothing good will come from not treating MS. It is an ugly disease that can take your dreams and freedom given a chance. Don't be foolish like me. Get help now.
I think I have to try and see it as most likely unrelated as they don't treat CIS with DMD's in the UK so there is absolutely nothing that would be gained by seeing anyone. I usually make a list of odd goings on and take them to my annual appointment.
My Neuro is excellent and apparently one of the best. I have no issues with her. Its just the way it is here. Until they can tell which patients with CIS ARE going to definitely develop MS things won't be changing any time soon. I'm at high risk but they still can't say its 100% likely. They tell me its 80-90%.
Its so different here than America and makes sense because of how our health systems differ. In the UK, (unless your private), We don't pay for our health care or need insurance. Often you find them using the cheaper options to save money or occasionally
life saving meds have been refused on the NHS and people have had to come up with funds themselves. Usually tens of thousands of Pounds!
I do wish I could know for definite what's going to happen. I know living in my body that things arn't quite right, but I'm really OK on the whole and am very grateful for that. I have learnt to except I have to wait for a significant attack that fits the criteria exactly. That could be years off, meanwhile I have these little weird things. Some may be related, some not. I know DMD's could slow things down but I can't concern myself with that when it is not an option. I visited the relapse clinic once with significant (or what I thought was significant), changes. Also mentioned several other small episodes to my neuro such as a few days of balance problems during which I fell down the stairs, I developed a limp with pain for several days, oh, the list goes on. Nothing was taken as a relapse. It does make me laugh though that it has to be SIGNIFICANT when my first attack wasn't really significant. In fact, if I were to have my symptoms of my first attack now they wouldn't treat it as a relapse! The only reason I got diagnosed really was down to the spinal and brain lesions, proof of demyelination.
It is great to hear you are feeling better. As for the dilemma of being CIS but not getting treatment, we hear that quite often from the UK. It is such a shame that the same criteria for treating CIS is not the same as here. But even with that approval, there are still lots of Neuros in the States who do the same and make the patient wait.
Either side of the pond, it makes no sense to take this gamble with people's lives unless it really is only about $$. We know early trreatment, even for CIS, great reduces the likelihood of permanant disability down the road. I hope something changes for you soon/
In some ways I hope for a significant relapse so they can get on and treat me. On the other hand I don't really want to be on meds so I just go along with it.
Its the waiting game for me here anyway and many others. I think after more research things are going to change. I am part of a massive study myself in the UK which looks at CIS patients and their chances of converting to clinical MS. I Hope something comes from that and other similar studies.
Um are you saying you are dx with CIS and you have proof of demyelination (lesions) in both your brain and spine?
I hate to point this out but having lesions in both, usually meets time and space, which would mean you probably fit the criteria for clinically dx of MS already. It might be worth your while finding out exactly what criteria they are using for dx.
I understand your in a CIS study, and it makes me wonder if they are using a change in MRI as proof of convertion, when convertion is usually based on those previous sx coming back. Being in the study could also mean you wont know your status until after the completion of the study, it happens sometimes. There was a study that was abruptly stopped because of ethics, the researchers knew they were monitoring converted subjects and the patients didn't know it and it meant they were being denied DMD's just because they were in the study. Research is less about the individual and more about the collective data, so it still might be worth getting a second opinion outside the study.
CIS is a one off event but if you do experience these sx again its no longer an isolated incident but a pattern of relapsing remitting sx and that usually means MS. I would highly recommend a second opinion!
Thank you for your comment. As far as I know, because brain lesions can come from many things and spinal very few, its just not certain. I could have the brain lesions from Migraines possibly? (I did read that was possible but I'm not sure), but the spinal lesions are most likely MS. I see what your saying though. But like I said, I can get an opinion from somewhere else, they still don't treat CIS here.
I think I'm being discharged at the end of the year, if nothing significant happens. Which of course my family think means I'm OK.
I'm really reluctant to get a second opinion because I feel like a hypochondriac.
Initially I mentioned every little thing and as nothing was taken as a relapse I now feel there isn't much point! So I try to mention the more noticeable things and not every little bit of numbness, spasm, and other weird sensations which could be anything.
As far as I know it was the Mc Doncald Criteria my neuro went off. She was quick to diagnose me with CIS. (Well, quick for the speed these things usually go), I had several MRI's the VEP etc... (no lumbar puncture, though it was attempted), then she had me in and told me.
As for the study, I know little about it. Just a study following CIS patients. I'll have a read of the info I have on it as its been a while.
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