Help me out please

[Katje]

There are many knowledgeable people here and i have received such good advice and insight on this site, I have a serious dilemma that maybe one or two of you may be able to answer.

Some of you may or may not know my hx, but I will do a quickie background.

I am now 48. Was dx with MS when I was 21, officaly at 28. Had ON 2 times, a relapse that made dizzy and leg numbness. It was thought I really had Lyme, was treated for a year with rocephin everyday, no attacks or progression on MRI since. That was over 20 years ago. Neuro wants to re examine MS dx.

fast forward to present. It was believed I had a stroke 6 weeks ago, sudden left arm weakness and uncoordinated, face spasmed and slurred speech. This happened over and over again, only upon movement. Had 2 MRI's, 2 EEG's, heart test. A stroke, seizures and ALS was ruled out according to my neuro. The back doc said nothing in myh back would make me slur. OK Well thats GREAT! except I am disabled now. Everytime I stand up, roll over, climb stairs, my left leg sends an odd sensation up, my arm gets weak, my face contorts and I slur.

It's not wise for me to go out in public because movement messes me up, I do ok if I stay upright for awhile, but up and down and bending over messes me up.

My neuro now wants another MRI to see if there are changes from a year ago, sounds reasonable however the hospital compared my MRI with my original old one from 20 uears ago and no changes. So this will be my 3rd MRI, he feels well maybe there are changes in the last 6 weeks. Ok sounds logical again, however I agree my symptoms are neurological but do not seem like MS.

My Father feels I might have a blockage in a carotid artery cutting off blood to my brain. I think thats a good thought, but unlikely. I am stumped and my PCP has abandoned me because I have MS, my neuro is a great guy but old and very slow. It's been 6 weeks, going on 7 this tuesday, someone needs to move faster, I am getting worse.

I would love some input from any of you here and what you think is going on.

Thank for those of you who took the time to read through this. lol

[Jules A]

I wish I had a guess but the only thing I can offer is to seek a second opinion from another neurologist.

In this situation I want someone cutting edge and unless the old timer is well connected at a MS clinic in a large teaching hospital I would want someone more cutting edge. Just my opinion and I hope you get both answers and relief soon.

[Fed Up]

I'd go for that MRI, in a heartbeat.

The other thing I'd go for, asap is: A Consultation. As much as, changing doctors is easy to say, often; not so easy to do.

There are many other options, etc. fed

[mjan]

OH dear you have been through so much, so sorry hon!

I am kinda going through the same thing=new MS neuro who wants to review EVERYTHING!!

She did mention that you can have acute episodes of MS.
AND you want to consider any "movement disorder" to be considered too.

I appreciate if it is NOT MS, like you, but what is it?

Sometimes they cannot SEE everything in the brain either. She mentioned too that, "we don't have enough sophisticated tools" to explain some of these cases."

GET another opinion, new MRI, or MRA. Maybe even Mayo. Mayo it like "Dr House".. ya know?

Keep us posted hon.. I truly FEEL for you!

Hugs, Jan

[MarkLavelle]

Can you get into the Rocky Mountain MS Center http://www.mscenter.org/ ?

Is there any other clinic in range?

[Katje]

I had 2 MRI's within the last 6 weeks, they were both compared with an MRI I had 20 years ago, no changed. My neuro thinks I need another MRI to compare with one I had a year ago, he seems oblivious to the 2 I had in the hospital 6 weeks ago. Anyway I am going in anyway to have yet another, I hope the contrast doest kill me since I had so much recently.

[mjan]

OH dear, I will be praying for you!

Again, consider a "movement disorder" too..

Hope you get answers and soon hon~ let us know how you are doing. Geez-louize..

Hugs, Jan

[Katje]

They gave me a disc of my MRI, I tried reading it but cant understand a thing. Whats apparent diffusion coefficient
and exponential apparent diffusion coefficient mean????

[rdmc]

Hi Katje,

Thought you might find this article interesting. It's from Wheelchair Kamikaze's website, and it's his personal story of MS. He has been to many world renowned doctors, as his MRIs have not changed during the course of his illness (about 10 years I think)...he basically has one solitary lesion in his brainstem, and yet his illness has relentlessly progressed. The doctor's have no answer, so they call it MS because that's the closest they can come to a diagnosis...it's an interesting read...The MisDiagnosis of MS
http://www.wheelchairkamikaze.com/20...rosis-and.html

[MarkLavelle]

They gave me a disc of my MRI, I tried reading it but cant understand a thing. Whats apparent diffusion coefficient
and exponential apparent diffusion coefficient mean????

The "Impression" section at the end of the written report is the closest thing to English that you'll find there. The reset is probably largely mumbo-jumbo to most doctors.

My guess (as an engineer) is that those diffusion coefficients give some indication of the quality or resolution of the scan.

[Katje]

Well after all the confusion after al these years, I am in fact having a relapse. 3 lesions. My neuro is upset how the hospital missed this 6 weeks ago. I am ashamed to admit I am relieved. I don't want MS, but for me it finally gives me closure.

Dx back when I was 21 with ON and officially at 28. I think having no symptoms or changes all these years is not half bad, however I have to admit I am a little frightened what the future might bring but I refuse to dwell on it.

I figure I might try the stem cell treatment that people talked about years ago, currently looking for a few who did hycy and similar treatments in the past. I realize there are many meds out there but quite frankly they scare me more than anything. I did take copaxone for many years and did well until a terrible reaction so I had to stop.