New here, may have CIS

New diagnosis and before diagnosis
1

Hello everyone!

I go by Mookie, or Mook. I’ve had a very, very rough weekend, and I’m seeking out answers while I’m waiting on all sorts of testing.

Long story: Thursday night, I was minding my own business when I noticed the vision in my left eye was going blurry (I do wear glasses, but this was going even worse). I went to bed, concerned, but couldn’t be bothered because I was at a conference all weekend.

Friday (the next day), I began experiencing tingling in my left arm. Also developed a facial tic on the left side of my face, so it’s constantly looking like I’m winking at people! :wink: By Friday night, I was having repetitive speech. “I would think think think think just find but some random words would would would would would would would repeat themselves for no no reason.”

Eventually decided I was probably having a stroke and should go to the ER. Got there, did lots of blood work, had a CT done. Had a CT with contrast done as well. Conclusion? Suspected lesion on the brain. Judging by my speech, they think it’s situatied somewhere close to speech control, which is causing the weird repeats.

I had a follow-up appointment with my doctor yesterday, who ordereded even MORE blood tests. They came back “abnormal” (I asked what that meant, they told me that they could see through blood work my brain was inflamed but didn’t know why until they get the MRI). So, I’m scheduled for two MRIs this Friday (one with and one without contrast). The ER told me the lesion could potentially be a very early sign of MS. Doctor agreed that the blood work they got back would point to MS as well, although they can’t really be sure because it could also be a brain tumor.

As you can see, I’m having a great weekend. :slight_smile: I’ll have another appointment next week to go over MRI results. I’ve been given some sedatives to take in the mean time to try to calm the facial tic down, which seems to relax my speech some.

Other symptoms that have been coming up: muscles that I didn’t even know I have are kinda sore, my left arm and sometimes my face is tingly, and I had a weird muscle spasm around my ribs/chest that was most unpleasant. Also, I can’t really explain why, but showers are painful. Not quite excruciating pain, but not quite soreness… It’s hard to explain. I’ve just been taking cold ones instead.

I’m hoping I can get at least some sort of direction or diagnosis (preferably one that ISN’T a brain tumor… :D).

2

Re the delightfully reassuring ER staff - for heaven’s sake, what are they thinking of? What little rays of sunshine they are!

Look, for what it’s worth, a high proportion of us on here have been ?stroke and ?brain tumour and ?Goodness knows what all else before they decided that there was nothing much the matter at all, or that it was ‘only’ MS, or something else entirely. Many of us remain blissfully unaware of the grisly list of suspects that the docs are patiently eliminating (as is their job) and the docs are usually polite enough to keep that bit to themselves. Of course they have to think through the grim possibilities - however unlikely - and eliminate them in logical sequence - but the patient generally gets an edited version of this process, not the full fat version! Perhaps you should take their professional candour as a compliment. :slight_smile:

In other words, don’t panic. Hang on in there, and I hope you get some answers soon. You wait; you’ll be seeing the funny side of the whole ghastly business sooner than you think.

Alison

p.s. I only found out long afterwards that my poor mother had been convinced that I had a brain tumour - the possibility had not even occurred to me!

3

I’m glad they were honest with me, but yeah, they definitely were freaking out and it showed. I was at a small-town hospital that doesn’t even have an MRI machine… they don’t get a ton of action.

Both MRIs tomorrow and then a follow up with the results next week. The meds they have given me are not enjoyable --I take them, get SUPER happy, then knock out for 9+ hours… wake up super groggy, feel very sad for a few hours.

Just going a lot of reading and praying in the mean time. :slight_smile:

4

Hi Mookie

You are taking all of this remarkably calmly. Or is that the drugs talking?

I cant imagine how you are coping with all these horrible thoughts running through your head.

If it is MS, it’s gone bananas very quickly. But all the symptoms do sound like they could fit (then again, virtually any symptoms could fit MS so that means nothing).

I hope your MRIs go well. And that nothing further starts up over this weekend. Let us know how it goes next week, or before if you need to vent a bit more worry, angst or just to get some empathy from people who’ve been in similar situations.

Sue

5

I know that feeling - there was some medical dashing about when they thought I had had a stroke, and this was years post MS dx. I hadn’t had a stroke at all: it was ‘just’ an MS relapse, as the MRI soon showed.

The thing is, I think, that if it actually might be an emergency - stroke or brain tumour, for instance - then they do charge into action pretty fast, and a good thing too. Even if there turns out to have been no need to panic at all. It’s reassuring in its way, but does nothing for the brain owner’s tranquillity of mind, as I well remember. Good wishes from here.

Alison

x

6

Hello all,

I had hte MRIs done, and was told today they “came back fine.” I have an appointment with the doctor tomorow. I’m not sure how to move forward since all of the symptoms say “MS MS MS” but a clean MRI kind of debunks that idea. Frustrating.

Some new issues that have come and gone over the last few days:

-showers are miserable? I just feel like crap when I take a hot shower. Feel better after I get out and have dried off, though.

-muscles inbetween my ribs are quite sore. It’s like wearing a corset that is WAY too tight. I am asthmatic, but I’ve never felt anything quite like this before.

-FATIGUE. I spend most of my days sleeping now. I imagine the drugs help a bit with this, but I’m constantly sleepy and seem to have zero energy.

-my muscles are quite achy. Not horrifically so, but weird muscles (like, the pads of my toes and my biceps) that don’t usually get sore doing strenuous activities are sore for no reason.

I’m hoping to get this sorted out soon, but I’m not gonna lie, I’m a bit bummed nothing showed on my MRI. At least that would have provided answers (however horrific they may be). Back to the “what the heck” stage…

7

Hi Mookie

If your appointment with the doctor is tomorrow, who’s told you the MRIs were ‘fine’? Does that mean clear with no lesions, or completely successful MRIs with very decent images of a pile of lesions?

But it’s really all dependant on what the doctor (neurologist?) has to say tomorrow. At least you’ve not got to wait for that appointment.

So I should wait and see what s/he says. It certainly does sound like you have some neurological problems, so the question really is, ‘what is the cause of these symptoms?’ And if there are no MS like lesions, then what else does the neuro suggest?

Sue

8

Hello all,

My doctors appointments thus far have been with a GP. No signs of lesions on my brain. The GP wrote everything off as having an anxiety issue (something I’ve never really struggled with) and gave me a prescription to help “calm me down.”

I follow up with him in two weeks to make sure I’m not having any adverse reactions to the anxiety meds. I think I’m going to just demand a referral to a neuro. Something obviously isn’t right, and while I won’t totally disregard the diagnosis of anxiety, I just don’t think that’s the end-all-be-all answer…

9

Mookie

Only a neurologist can either diagnose or definitively rule out MS. Your GP can’t make that decision. If you have neurological symptoms, then you should really be referred to a neurologist. They can do a proper neurological physical exam, check the MRI you’ve had done and maybe get another done with Gadolinium contrast - which helps to show up lesions.

Equally there could be other neurological reasons for your symptoms which will only be identified by a neurologist.

In your situation, I think you should be asking for a referral.

Sue

10

Thanks for your suggestion, I’ve located a neurologist not too far away that actually specializes in MS-related cases. I’m going to work to get a referral to them and see what they say.

11

There is a strange state of mind in which we feel that we would tolerate bad news better than continuing uncertainty. I’ve been there too. Sad experience teaches me that continuing uncertainty does, in fact, have much to be said for it! :slight_smile:

It’s great news that you haven’t got any of the things that would most likely kill you. It seems to me that this is the main news of the day, and it is good news. Whatever else may emerge over time, well, you’ll deal with it.

The neuro referral suggestion sounds like a very good idea to me, too.

Alison