Almost Forgot to Introduce Myself - My MSAA Community

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Almost Forgot to Introduce Myself

14 Replies

Oops. I don't think I introduced myself before last post. :-)

My name is Terri. I'm a 53-year-old female and was diagnosed with RRMS end of March, this year. I've had symptoms for many, many years but when I saw doctors (when I was younger) they all basically said it was all in my head. My PCP has been telling me to see a neurologist for YEARS but I never followed through because she already had me on gabapentin and had put me through all the tests she could. I figured it would just be a waste of time. I had been diagnosed as having Fibromyalgia, too, so why see a neurologist.

When I finally saw a neurologist, he ordered BAER, EEG, upper and lower EMG's, brain MRI, 4 pages of blood tests, and VER tests. The MRI showed (done in November) a small lesion in the left cerebellum and small lesions in the peri-ventricular white matter; the EMG's showed definite nerve damage (I have numbness in several areas of my body); the VER was good; the EEG showed spikes when it shouldn't have (but I've never had a seizure in my life); and the BAER test showed that there is a lesion in the brain stem, definite nerve damage in my left ear, which could explain the constant high-pitched tinnitus I have day in and day out.

Anyhow, just thought I'd say HI. Hope everyone is doing well.

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14 Replies
Royjr profile image
Royjr

Hello!!!!

greaterexp profile image
greaterexp

Hidden , welcome! I'm sorry about your diagnosis, but I know it does seem a relief to learn that we aren't just hypochondriacs.

I hope you find being here the same blessing I find it to be. I look forward to learning more about you.

Erin

agate profile image
agate

@shadowsmom42, nice to "meet" you!

I've had most of the tests you mention, and my guess is that most people here will be familiar with them. So you're not alone.

I'm Joan, and my MS was diagnosed in 1980. I'm still alive and kicking.

I had a "substantially normal" EEG, and something was muttered about putting me on Dilantin, the drug given to people with seizures, but nothing more was ever said about it. I've never had a seizure either, and I"m glad of that.

I supposedly have a brainstem problem, and my VER was severely abnormal.

Will you be on one of the MS drugs? Or maybe you're already on one?

in reply to agate

Hi agate. Yes, I am on Copaxone, 40 mg. Started right after he diagnosed me. :-)

erash profile image
erash

Hi and welcome Hidden

The road to diagnosis is and has been long and frustrating for many of us. 🙁

Morllyn profile image
Morllyn

Welcome Hidden !

Iona60 profile image
Iona60

Hi Hidden . Sorry you have MS, but hoping you are greatful for finally getting a diagnosis. I know I was.

in reply to Iona60

I am. I'm a Certified Medical Assistant so I was already expecting the diagnosis long before it was confirmed. The neurologist was on the quiet side, not quite coming out and saying it was RRMS so I just asked, "It IS RRMS, right?" He said, "Yes. I'd like to start you on Copaxone if you are open to it. If you were my wife or my daughter I'd want you on it." I think he was surprised that I wasn't upset, I was open to Copaxone.

Eleyne92 profile image
Eleyne92

Hi, Terri, and welcome.

Kath55 profile image
Kath55

Hi Terri, nice to meet you. You've a good long story

WAshingtongirl profile image
WAshingtongirl

Welcome Hidden ! 💕

Bamfan1442 profile image
Bamfan1442

Hi Hidden and welcome! I am so much like you, had symptoms for so long and was told back in the 90's I had fibro and chronic fatigue. But now I have a great PCP, my first appt. with her was on Wed the 14th, and she is referring me to a neuro. Finally!! Now I can get some answers, since I've been having a lot of new and weird symptoms and sensations over the past year. I had no insurance, so haven't seen a dr. in over two years but now I have Medicaid so I am getting the tests I feel I have needed for a long time. Lost my previous two jobs I had because I couldn't keep up with the pace, constantly dropped s#!t cuz my hands and arms went numb, and couldn't retain info and follow instructions. Hard to explain that to my bf and other people, they just don't get why I can't keep and hold down a job. But, come hell or high water, I am going to fight for my ssi (in process) and pursue a diagnosis, hopefully before I get booted out of here for not bringing in some $$! :-(

CalfeeChick profile image
CalfeeChickCommunityAmbassador

Hi Terri, Welcome to the forum. I'm Lynn. It will be 1 yr at the end of this month since I went numb and life was forever changed. Actual DX late Dec. 2016. More defined this last April.

jackiesj profile image
jackiesj

I'm off and on but nice to meet you!This group is so wonderful....that emans you too!I am a grandma of 7 with rrms and heart disease.day by day sometimes minute by minute.I am a COAI(registered clowns of America international.but retired) and we share pics of furbabies, flowers kids etc..take care!jj

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