anyone been dx, then months later neuro says "might not be MS"??

[seeuinct]

Ok so I have been away for a while. I just needed to get this out....
When my first glaring symptoms started in March of 2011 (l'hermittes, leg weakness after walking more than several feet) it took a year for the neuro to say "Ok lets try DMDs, very probably MS".
Then after 6 months of treatment, I stopped taking the DMD (Avonex) because I became needle shy. I was fine in the beginning, but got a couple needles stuck in my leg muscle (i think i was tensing up) which freaked me out. I could not give myself the shot anymore and used excuses to put it off.
[Original dx was due to 2 spinal chord lesions, 1 enhancing, o-bands in spinal fluid, negatives on the tests for other autoimmune disorders. No brain lesions. Still the neuro put me on DMDs.]

Biogen called my neuro and told on me (I had not ordered more meds). So doc took me off and said maybe you just had Transverse Myelitis or a CID. I had no brain lesions, only spinal.

Fine. Good. Great.

So fast forward to Feb 2014 and I get what I think might be Trigeminal Neuralgia, and a lot of all the weird parasthesia, and tingling, numbness, and weakness in my legs when I walk for too long has come back too. I NEVER EVER GET HEADACHES. I know that's bizarre, but it is very true. Now I am popping ibuprofen daily to keep that intermittent, inconsistent, stabbing pain in my head away. The "TN" is in my scalp near hairline, not in face. But pain sometimes when I swallow, blink, touch face or hair.

Called neuro and he wants to do MRIs (brain, cervical thoracic). I asked him if people can have MS and have spinal lesions only. I have heard this can happen, though its rare. He said "not really". Ok....great now I don't know what this is.....again.

I know something is off inside of me to have all these weird tingling, numb, weak, itching, hot flash sensations that travel over my legs. In my head there is a sharp stabbing pain that is random and makes my eye twitch. My head hurt so bad that I could not even brush it when this started several weeks ago. Now that's gone and there is an on and off itchy feeling, that is driving me bananas (I checked for dandruff, dry scalp). Still intermittent stabs of pain. Waiting now to see if I have a brain tumor, TN, more lesions, ect ect. Who knows what this really is?

I thank you for allowing me to rant. I am grateful there is a place I can let go of my frustrations. And somehow I bet someone will write back and say that they know exactly (or near enough) what I am talking about.
Thanks MS World for listening and understanding!

-See
(see u in Connecticutt)
Dx-2012; then back in limbo 6 short months later
Avonex for those 6 months
Currently baffled....

[SNOOPY]

Hello seeuinct,

It is possible to have MS with only spinal cord involvement. You will find others, besides myself, who have 'mainly' or 'only' spinal cord lesions.

When I was diagnosed my MRI was clear, my LP was positive. My neuro said based on my symptoms MS was affecting the spinal cord. He was correct. To this day I have only a few (3) brain lesions but in the past my spinal cord showed numerous (too many to count).

The majority of my symptoms are from the waist down. I do have hand tremors and Lhermitttes. Lhermittes is not exclusive to MS but when you have MS this symptom is caused my lesions on the cervical spine.

In the many years I have been on MS forums I have seen quite a few instances of those who are diagnosed, undiagnosed, re-diagnosed, undiagnosed Well, I'm sure you get the idea

Personally, I have never had this experience as my diagnosis has never been questioned, although I did have one neuro who tried to make me 'worse' than I was by believing I had NMO. That belief was disproven.

You might consider getting a second opinion as to MS or not MS.

[gomer]

Based on the limited info in your post, I think the doc was probably right the first time. While I have tons of brain lesions, and one spinal, not all MS cases have lesions in both the brain and spine.

My personal impression is the doc is telling you what he thinks you want to hear, and that is what you post reads like to me.

I did IM injections for a while, decades ago for B12, never liked doing them, but, as a long long time needle diabetic, shots were nothing new.

I opted for Copaxone. I did not want to do IM shots and C is a SC shot done the same way as my insulin shots I do, and have done for many decades. Another factor was I did not wan to deal with the side effects of other DMDs.

I think you want ( & seek) a Dx of something fixable that can be fixed and it be gone, and not chronic. That is not always possible. My diabetes, diplopia, MS and other issues are something I have to deal with now and every day I am alive. It's called life, maybe not fun, but it is life.

Gomer

[seeuinct]

thank you

Thank you Snoopy and Gomer for your replies. I always learn so much here on MSWorld.
I like things to fit in categories, which helps me deal with them more efficiently. But you are right Gomer life does not always work that way.
Whether or not it is MS remains to be seen but it means so much to have a place to go to help cope with all the uncertainty.
-see

[akafearless]

New doc is questioning MS dx

Went to an MS specialist at the medical college. He is not convinced I have MS. I've been dx'd for almost 5 years and on Avonex. He doesn't think my MRIs are bad enough.

My LP was negative for O bands back then just had elevated ?. I had a Dawson's finger, had a second opinion. Didn't have the VEP testing.

They took 7 tubes of blood on Friday and he is going to schedule the VEP.

Most of my issues are cognitive and memory an I have hearing loss in both ears.

Any thoughts?