Last reply 1 year ago
Misdiagnosed? Then new symptoms

Hi everybody.
Just a little intro to me and a rundown of my story…

I’m Leona, and a little over 4 years ago, about age 32, I started having tremors around the same time that I started going numb. It started on my abdomen and then ran around my side and up my back and neck and then eventually was numb even on part of my scalp. I went to see a neurologist and he gave me the “working diagnosis” of MS… which was a shock! Then he did lab work and an MRI and ended up calling it clinically isolated syndrome.

So, now 4 years later I still have tremors, that have never went away but haven’t gotten worse either. That original numbness is gone though. But a month or two ago, I started having these weird feelings in one of my legs. Just this weird, warm sensation that runs down my leg and it really feels like I peed on myself! It’s happening often enough that i got worried and made an appt with the neurologist next week. And there’s one area on my arm that’s doing something similar but not exactly the same. Hard to describe it, its kind of like it’s just waking up from being asleep, kind of a little tingly but a different temperature sensation too.

So anyway. I really didn’t think this would turn into MS, for some reason. But now I’m afraid that’s the news I’ll get before long.

Idk what I’m looking for… advice or just a welcome or somebody to say they relate to those weird sensations…

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1 year ago

Welcome to Shift ms. Hopefully your neurologist will be able to confirm whether your condition has changed. This can make it easier to have a positive slant on the hand dealt to you, and also come to terms with it on a personal basis. This site/forum is brilliant because you can talk/rant/let off steam to people who have an understanding of how you feel/what you are going through. It is also great as it allows you to meet others with similar issues to yourself, and also those that are able to give you pointers as to how they have coped with the changes to their lives.Be positive, never lose yourself and keep your sense of humour. Talk to us lot, we’re probably as mad as a box of frogs but we’re great!! Good luckx

1 year ago

Thank you 🙂
I’m not going to get too far down in the dumps about the possibility just yet, although I can’t help but worry. It was hard several years ago when they first told me and I don’t want to go through that all over again. But realistically I know there are far worse diagnoses than this, and that I will just have to deal with whatever comes my way!

1 year ago

Hi @leelee375 and welcome.

A diagnosis of Clinically Isolated Syndrome (CIS) is, in my mind, a diagnosis of “Singular Sclerosis”. Basically, it doesn’t fit the criteria of MS, which requires multiple instances.

CIS may, or may not, progress to MS. The latest thinking on CIS is to treat it with a Disease Modifying Treatment (DMT) to prevent this progression.

However, if you have progressed to a diagnosis of MS then you can start considering a DMT to take control and manage the condition. You will be treated and monitored, rather than adopt a wait’n’see approach, which you have experienced with the CIS.

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