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Follow up appnt post CIS dx- advice wanted

Hello,

I was diagnosed as CIS, with the event thought to have started at the end of last year. I’m seeing the neurologist on Saturday and would like advice on how to approach this. Since this time I’ve had bouts of pins and needles on various limb not too dissimilar to the first episode, but not as pronounced or long lasting. I’ve also been left with nerve damage (I think) resulting in a numb thumb and index finger when sitting in certain positions, which then turns into pain. My main issue is that about 2 weeks ago my legs from my waist down felt completely numb and left me with very heavy legs, for about 3 days. I liken it to when I had severe flu that left me bed ridden. I was able to walk but it was a real effort. During this time I fell down the stairs twice, once in the dark and another time when I was holding my toddler!! My legs still feel a little heavy but I’m about 80% recovered, but I’ve been left with pain in one of my toes. Not sure if the fall was due to a lack of coordination or balance issues.

I also forgot to add…before my legs got heavy and numb my eyelid and top lip were twitching intermittently for 5 days!? Not sure what’s going on there, never happened before…

I want to relay all this to the neurologist, but I also don’t want to sound like a raging hypochondriac. Can one have a relapse so soon after the first! Does it sound like a relapse to any of you? Also how would any of you put it to your neurologist. Just to add I have lesions on my brain and spine and the MRI report states that I have an underlying inflammatory disease, but do not yet meet the dissemination of time criteria.

Any advice welcome

Hello

I should think this is a new relapse as it’s new symptoms from the original relapse, this would mean that you do actually meet the dissemination in time criteria for your CIS diagnosis to change to MS (imo).

When you say you feel that you’ve been left with nerve damage, chances are that this will still improve. Sometimes symptoms from a relapse can take months and months to get better. Or your nerves will gradually compensate for any damage and feeling & movement will return.

The way I’d approach the appointment on Saturday is to write down all of the symptoms that you’ve had. Put rough dates next to each symptom and how long they took to improve, or whether they are still with you. Keep in mind that a relapse is counted as a new or repeated symptom that lasts at least 24 hours and has come at least one month after the last time you experienced that symptom.

The severely heavy legs in particular should be mentioned, especially since you fell down the stairs and as you say, the feeling still isn’t right. Also the facial twitching. Both of these were new symptoms.

Don’t worry about sounding like a hypochondriac. Make sure you mention everything that’s happened, and don’t be afraid of getting your list out. (If possible get your child minded as you’ll find it much easier to concentrate if you’re not watching a small child!) If you can, take someone with you to the appointment who can help you remember. It’s easy to walk out from an appointment and wonder what was said and what is supposed to happen next.

Regardless of whether the neurologist decides it is now MS, have a think about whether you want to start on disease modifying drugs (DMDs). And if you do, ask for them if s/he doesn’t suggest it. Even if the diagnosis is left at CIS, there are some DMDs that are licensed for CIS. Preventing further relapses would be a good goal. Also, ask whether you will be assigned an MS nurse. Most of them are fabulous. Some people would rather have a good MS nurse than a good neuro! (Both is ideal obviously!)

Good luck for Saturday.

Sue

Thank you for your thoughtful reply!!

So the neurologist suspects its another event of spinal cord inflammation and has prescribed steroids, I’m actually on the fence about taking them…

The neurologist suspects it’s a different region of my spine, but has said it could also possibly be the “re activation” of the same patch of inflammation that occurred in October. I’m having another MRI next week to confirm. The neurologist is reluctant to discuss anything further until the new MRI is done and reported, we meet up again in a couple weeks. Like the last appointment the neurologist won’t mention MS, although there is an acknowledgement that regardless of the MRI this is a second separate neurological event. I get the impression that the neurologist trying to stop me from getting overly anxious, but it’s unfortunately doing the opposite.

I left the appointment feeling happy that asked ALL the questions you suggested, but dissatisfied that I couldn’t get any real answers. I couldn’t even get a response on other treatment options. Like I’ve said before, the neurologist seems like a lovely person and I know they are very knowledgeable, and I know they’re taking me seriously, but I’m not overly keen on their approach. But it’s also possible that I’m just impatient and I want answers immediately.

I’m scared that this will be my life from now on, just waiting for an event/relapse that will permanently knock me sideways and leave me disabled. If any one reading this has been left disabled please forgive me, I know it’s not a death sentence and I’m sure you just get on with it, as it were… but this has always been a real fear for me!!

Just want to say thank you again.