kind of freaking out

[momofmmw]

Hi.

First off, I'll be very clear to say...I have not been diagnosed with MS. I am...very very weird and complicated it seems. The more I read about symptoms...the more I feel like I have MS. I am going BACK to my doctor on Friday, and I'm wondering...did any of you have a feeling that something was very very wrong but just couldn't get someone to listen to you?

About 8 years ago I was told I had Fibromyalgia. My feet hurt like nothing I've ever felt, my joints were sore, I was extremely tired all the time and I would have these "tremors" when I got really tired. After a while, those symptoms seemed to get better. I thought I was managing my fibro and I congratulated myself. In fact, I was working out, running, Zumba, etc. I thought HEY! noooo problem. Ever so often, I would have a "bad week or two", but I learned to deal. I learned to not over do and I would realize I had because I would stutter, "lose my words" or have those tremors.

Last summer, things came to a screeching halt. My breathing was very labored and I had horrible chest pain. I got to where I couldn't even walk across the room. Every test was negative. FINALLY, a scan showed a weird tumor in my left lung and my lymph nodes were on fire. I had the tumor removed (benign) and lymph nodes got slightly better. BUT the chest pain remained. A YEAR later...when I get tired, my chest hurts so badly, I can hardly stand it. A month ago, I was so tired that I went to sleep at 7:30 every night for a week. Now, the tiredness comes and goes...but I have also developed tingling in my left arm and leg...and now weakness in my left arm and leg. Also...a rash. The chest pain continues.

The last time I went to the dr. he said: good news! All your tests came back normal. Except low vitamin D.

SOOOOOOOOOOOOOO...does ANY of this sound familiar to anyone?! Am I crazy!? Should I insist on tests for MS?
I am sorry to go on and on...I have not told anyone about my fears...not even my husband. Somehow...this seems safer. I just read and read and finally thought: I'm just going to ask. I'd appreciate any words.
thanks

[JerryD]

Oh.. you should be happy ! All of your tests are 'normal' So says your 'doctor'. lol EXCEPT FOR VITAMIN D . Always a good place to start. Get started on supplementing your vitamin D. And keep checking it with blood tests.
I am not a doctor but I would change my diet to be less than 20% protein and get more fruits and vegetables. Check out the McDougall diet. You aren't crazy but your body is telling you something. Good luck

[aspen]

I can't comment on your symptoms and whether or not they are indicative of ms, but many times I've been sitting in the chair, with right side hemiparesis, hearing the same congratulations from a doctor. Really? Everything is fine?

Welcome to limbo :-P.

The thing is, YOU know something is off ... we have to be our own advocates. BTW my vit. D was low too; am now taking 2000 i.u./day to try to normalize it. Also my only "off" test.

What finally helped me was arriving at my family doctor's office while in the midst of the worst of one of my episodes. Didn't have an appointment -- just showed up.

Now that my family doctor is on board, he has been the one pushing for assessment and also encouraging ME to keep going (because this is very wearing).

There are no tests for ms, per se ... but there are many, many mimics and yes, you should be pushing for further investigation. It likely isn't ms ... but as you know, it's not normal.

One idea that helped me as well -- When I couldn't stand the weakness anymore, I got assessed by a physiotherapist, and had him write a report for my family doctor. He evaluated muscle groups and was able to identify and quantify weakness (and mild atrophy due to disuse).

BY the time I saw the first ms specialist, I was basically fine, and passed the neuro exam ... the problem with the wait to get in. He was not interested in my history, just my current state -- so I was told definitely not ms. Thankfully, a month later I was seen be a second ms specialist and this time had signs showing that something was wrong.

One more thing that will help -- as healthy people we have no vocabulary for pain. I have found it very difficult to describe how I "feel" to doctors. Is your chest pain in a heart area? In your ribs? Is it squeezing/burning/probing/spasming/constant/intermittent ... etc. etc. Could it be gastric something? If you have a hot bath, do your sx get worse or feel better?

Oh, and also keep a journal of when symptoms start and stop -- the timeline will be helpful in the future if things continue.

[from2344]

I feel your frustration and your pain. I have had problems with swallowing for a few years and my Dr. just shined me on when I mentioned it to him so I just blew it off as nothing. Last April I began getting electric pains on my thighs and lower back it was so debilitating I was unable to leave my house. I never knew when it would happen or how loud I would scream from it. I again mentioned it to my Dr. and he told me it was from my nerve damage in my back (I have had 5 back surgeries at this point).

I didn't know what to do I started to think I was losing my mind. Then I started getting shocked when I put my head to my chest. I was at my back surgeons office and I decided I would just mention it again and I also had tingling and numbing in my hands. Anyways, this is when finally someone listened to me the Dr. thought it was fibromyalgia but did a mri of my neck to rule anything out. It came back with a lesion on c4 this was the beginning of more tests and then to an mri of my brain where 7 more lesions were found.
So I guess for me it took the right doctor to listen and to run the right tests. I was diagnosed not by the back surgeon but by a neurologist and am now taking avonex.

I hope I didn't ramble to much but don't give up it only takes that one right Dr. to really listen and find the problem whether it be Ms or an entirely different diagnosis its your body and you have every right to want to know and to know what changes are happening to you.
Best of luck to you and don't give up.

[KatieAgain]

I knew something was wrong and I knew it was neurological because people around me started getting sick. So yes...sometimes we have to listen to our 6th sense.

As far as Vit D. Hugely important.