Last reply 2 months ago
Newbie + very long remission

Hello everyone! I’m new here and sort of new to MS. I was diagnosed in March during a hospital stay to get corticosteroids to treat the loss of sensation from the waist down, strange sensations, weird itching, (which had gone on for about 4 weeks when I realized it wasn’t going to go away). I felt a bit surprised at first, and now I think I was a bit thick or ‘in denial’ because I never made the connection with the double vision I had forty odd years ago as a teenager or with my left hand going numb for a couple of weeks in 2012.

Well, the neurologist saw the connection as well as old lesions (scars?) on the MRIs along with the current inflammation and after a lumbar puncture and the ruling out of a bunch of other afflictions, arrived at the MS diagnosis. So here I am at 57, thinking that either I missed a lot of relapses, or I’ve just had a really long remission. Forty years ago there were no MRIs so with one episode of optic neuritis, we were told to wait and see. MS was mentioned but not confirmed. This time, the neurologist writes in her report that with 3 relapses in 40 years, a treatment might not be indicated. I’m having more MRI scans (spine + brain) at the end of May and will see the neurologist in June.

I’m an American living in France, I don’t think there are MS nurses here, so I must get my questions ready for the neurologist visit in June.

I’m planning on bring up the following:
-Interpretation of MRIs for the future (treatment, progression)
-Treatment options because I really don’t want to have another relapse
-Possible physiotherapy for my hand as it’s losing sensation again.
-How to identify a new relapse (or is it just lingering effects of the last one?)

Is there anything else I should ask about? (I may not be seeing the neurologist very often)

Thanks for letting me tell my story. I know I should be ever so grateful for the long remission, and I am, but still a bit anxious and scared, getting used to the new situation.
Laura

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stumbler
3 months ago

@embroideress , the past history of our MS is different for each of us. But. it is just that, history. It’s in the past and we all need to live for the present, while protecting our future.

So, your questions are relevant, although interpretation of MRIs is neither here nor there. It is an interpretation and won’t alter the diagnosis.

Try not to be too anxious and scared. You could find yourself spending the rest of your life worrying about things that never happen. 😉


sherryak
3 months ago

@embroideress – MS is where your body sees the lining of your brain & spinal cord (myelin) as an enemy to attack. When it attacks, it leaves behind scabs/scars (plaque) in the lining. Your brain will try to send a message to a body part & a scab might be in the way. Your brain will eventually figure out a new route to get messages to that body part but whenever you have a trigger (like heat), your brain forgets the new route & you get to enjoy (said sarcastically) one of your previous issues.

I say all of that because it sounds like your numb hand may have been a previous MS attack. With having it come back to some degree, it sounds like you may be having one of your “triggers” making the issue flare up. Trigger might be an environment that’s very hot or stress or some other thing that is your personal trigger.

Usually an MS attack (not just a trigger blocking messages) involves an all new issue. Triggers blocking messages are not pleasant, but at least a new scab is not being formed. An MS attack is making a new scab on your brain & you want to get it stopped as soon as possible.

When you say that you were in remission for a long time, you can be completely positive about that unless you see a scan (MRI) of your brain & see that there is no new scars (plaque). I say all of that NOT to alarm you or anything. The past is behind us & we start with right now. MS medicine is to prevent future attacks (that results in the plaque on the brain). But not all MS issues are new MS attacks. Like I said, you could have just triggered a return of an old issue. When you have the return of an old issue, you just have to get the trigger under control. An example is that one of my MS issues is lower back spasms & one of my triggers is environmental heat. I was once visiting my sister & their house was VERY warm. I ended up laying on the tile floor in her basement bathroom & she covered me in ice packs until the back spasms finally ended. I was back to normal in no time. But that is just an example of a flare up caused by one of my triggers.

If I have an MS attack, that’s a new issue & my neurologist typically puts me on steroid IVs to make it stop. It’s the new issues caused by an MS attack that are the most alarming. We have to make the new ones stop as soon as possible to get the plaque stopped.

But whatever you decide to do to prevent future attacks, one of the most helpful things you can do is monitor yourself. It’s helpful to figure out your triggers & figure out what your current “normal” is. Don’t upset yourself; just look at today as your starting point & start figuring yourself out.

An example of figuring out your own triggers is that I volunteered for an exercise study with people with MS. In that study, I learned that I can work up a sweat with no problem as long as the room that I am in is cool. But you’ll be fine. Don’t worry; that does no good whatsoever. Just start getting to know yourself & your own MS. You’ve got this! 🤓


embroideress
3 months ago

@stumbler thank you for your response. You’re right, I need to focus on the present, and not allow myself to give in to or dwell on fearful thoughts.

@sherryak thank you for answering. Your explanations and examples are really helpful. So I’ll need to figure out the triggers which cause these symptoms, like numb hand, burning thigh, tingly feet. Getting to know my ‘new normal’ seems quite a challenge. Did you (or do you) keep a journal to track what’s happening, at least at first? Things change daily and I’m still recovering from my relapse which began in February. Thank you so very much for your encouragement!


vixen
3 months ago

Hello @embroideress, glad you found Shift. Like you, I was in shock to find myself with an out-of-the-blue diagnosis last year at the age of 50. I hadn’t xperienced any symptoms at all, although there is one possible mild tingling I had twenty years ago. It’s a bit weird, because at this age, you sort of start thinking about how you want the journey into a more senior phase of life go, and suddenly you’re having to do a bit of a rethink. But hey ho, there are far, far worse things that can happen. Life on a daily basis can be a challenge, but I try really hard to count my blessings every day. I can’t affect this condition or outcome, but I can affect how I feel, and and do everything I can to live as holistically as possible.

Are you going to be remaining in France? One thing you might need to be wary of since diagnosis, is pinning every ache, pain and health blip on MS. You often hear or read about people struggling to find what ‘the new normal’ means. I’m still working on that, but I’m at the stage where I don’t really worry about that anymore; it is what it is, and life will unfold as it will. It sounds like you are pretty much on top of things. There are some small things you could find out about. For example, a diagnosis in the U.K. means you have to renew your driving licence every three years. I assume you speak French, but if not, it might be good to find out some key medical words and phrases, just in case you need them.

It sounds like you have a lovely life. I hope your appointments go OK, and that you find your groove quickly and easily with this new turn of events! Take care x


sherryak
3 months ago

I kept a journal on my iPod when I was first diagnosed. I took a lot of pictures to put in my journal. When I survived the car wreck 12/9/12, I was out of it for over a month. When I finally started remembering that the woman that was always in the hospital room was my mother & things like that, the journal & pictures were incredibly helpful. That wasn’t why I did it, but that was a tremendous bonus. But just making a note of big events (like when the numbness of your hand started) can be very useful. I don’t go back to my journal often, but I’ve done it enough that I’m glad I bothered with it.


embroideress
2 months ago

@vixen Thank you very much for reading my story and answering! I guess it’s good in a way to avoid getting too comfortable and having the rug pulled out from under my feet has made me wake up. I love your use of the terms ‘find your groove’ an ‘new turn of events’ as they sound like you’re talking about an adventure rather than an affliction. So I will think in those terms from here on in.
I’ve been practicing yoga + meditation and living a vegetarian lifestyle for a long time, so I’ll continue, trying to remain in the present moment and isn’t that what meditation is supposed to allow us to do anyway? I do live permanently in France, and will take my husband to appointments with me since he’s a native French speaker.
So glad to have found Shift and people like you, who understand the problems ms presents us with and who help each other to live better with it.
Thank you for your encouraging words and bright outlook!

@sherryak wow, your journal really helped you, in ways you couldn’t have imagined! I think I will begin a proper journal to find out my triggers and what feels normal to me. Thank you.


cameron
2 months ago

Rather than writing a narrative I made a daily diary entry based on numbers. I had a list of symptoms: A) was leg pain, B) was ankle weakness etc. I then graded each one on a 1 – 5 scale of severity, where 0 meant I hadn’t noticed anything that day and 5 meant that it was extremely bothersome. So all there was to do every day was briefly think about each symptom and how – if at all – it had affected me. It had two positive outcomes: I found it became easier to stop the spiral of unwanted thoughts during the day, because I had my ‘MS slot’ to focus everything in. Also, after I’d been doing it for a few months I began to see patterns in my scores. Basically, I found out that scores were always higher when there’d been any stressful event or I’d been overdoing it. Pretty obvious, you might think, but it really helped me get some control back. I kept it up for years, till everything felt so familiar that I realised I didn’t need written evidence any more. xx


cameron
2 months ago

PS I should have explained that I wrote the ‘key’ to the numbers and the symptoms they referred to on the flyleaf of my diary. Then all I did every evening was to write (e.g) A1 B2 C0 D3 E1. As I said, higher scores usually correlated with stressful events, e.g. the dentist.


embroideress
2 months ago

@cameron what a brilliant method! As you say, a great way to stop dwelling on the symptoms throughout the day, which is so very stressful in itself. I hope you don’t mind if I steal your idea and use your method. 😉


cameron
2 months ago

Thank you for that! I hope it works for you as well as it did for me. I also found that having to think about and list the symptoms helped to convert the MS from the unpredictable many-tentacled beast into something more tangible and specific. It could also work using a big calendar- then you could flip over the months and perhaps the emerging patterns would be more obvious. I also found it a useful preparation for my neuro appointments: I could say with confidence that (e.g.) symptom A was always there but BC and D were come-and-go symptoms. Let us know how you get on. xx


embroideress
2 months ago

@cameron oh yes! I love the calendar form! I’m big into day planners and time tables, the more colorful, the better. And I like the idea of appearing as a confident, organized ms patient to the neurologist 😉 Thank you!

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