Finally saw a MS specialist

[hope4normal]

The 1st neurologist I saw in Tx said I definitely have MS after reading my medical records. He sent me to a neurologist who specializes in MS and I've been very happy that I FINALLY get to see one. My blood work of course looks wonderful and I tested negative on many many tests. My LP from last year said I have 5 o bands and a positive result on MS panel.

I just got my MRI results from the brain scan and I'm confused. It says:

Findings: There is a nonenhancing T2 hyperintense foci in the right frontal lobe with additional foci of T2 hyperintensity on the right greater than left occipital and left parietal.  Reticular white matter.  Otherwise, gray and white matter signal characteristic is seen throughout, and specifically within the corpus callosum.
IMPRESSION: Multiple foci of T2 hyperintensity within the subcortical and periventricular white matter, which could be consistent with demyelinating foci.  There is no restricted diffusion or enhancement seen to suggest active demyelination.

I've only seen the specialist one time and I go back next week. She told me that I did not fit the McDonald criteria for MS up to the point that I saw her. She said after she got all the tests back then she would make a decision. Her first guess was Sjogrens but that blood test was negative.


After this MRI what do you think? I've never had a neurologist give a diagnosis and another one say the first one was wrong.

[HVAC]

Copaxone injections are not bad. The first one is the worst because you give it to yourself. A nurse is there to help. The other reason it is hard is it make MS real. I liked that Copaxone had only minor side effects and not everyone gets them.

Alex

[Corriel]

I doubt there are newly developed o-bands this early so I don't think a repeat LP is necessary right now. Maybe for the next MRI though or a flare whichever comes first.

I have not taken Copaxone but several others here have.

Hugs,
Corrie

[jensequitur]

I would advise not to bother with a second LP. It's a lot of stuff to go through, and O bands don't go away.

[hope4normal]

Thanks everyone for your input and your help. I had my follow up appointment today.

The neuro looked at the last 2 MRIs and said there were some differences in lesions. Some didn't show up this time and there were new ones in new areas. There was one that she was on the fence about and said it was too close to call. So we will do another MRI next year to see what else changes.

She did say that I'm "highly at risk for MS" and told me that next time we will discuss taking a med called Copaxone. Has anyone taken these injections?

I was also asked if I was up for another LP to see if the Obands are still there. Any thoughts?

Sjogrens was eliminated and all blood work was normal. I received a book on MS and a book that was made by the company who makes Copaxone. I know she is cautious and I appreciate that.

Thanks again for your encouragement.

[kwarendorf]

Hi HFN -

There are a few ways MRI can satisfiy the MacDOnald criteria related to dissemination in time.

1) A single MRI with and without contrast showing both enhancing and non enhancing lesions meets the criteria.

2) 2 MRI's, genrally 6 months apart, showing additional lesions on the second, with or without enhancement, meet the criteria.

3) Least likely is 2 MRI's done with contrast, 6 months apart, that show the same lesions, but with some enhancement visible in the second.

Your's seem to have shown the same lesions, but no enhancement. TO a by the book doc this would not meet the criteria.

Kyle

[suspiciouscombo]

The more I read here on this terrific site, the more I learn and understand why certain neurologists navigated the path they have.

One neurologist stated that I may be "experiencing early onset symptoms of MS", another states it could be something other than MS since "no spots" are evident on the MRIs.

Some hold steadfast to the McDonald Criteria and clinical findings whereas others (as I've read here) were dx based on symptomatic history.

I do agree that usually it takes seeking another opinion from a different Neurologist if your case is not yet evident. Many years ago, I remember the second neurologist who was thorough with testing, thought for certain it may be Sjogrens in my case but it was not.

A common theme I see here is the "wait and see" mode. It would stand to be true considering some have symptoms close to that of MS but zero findings on exams, blood panels and MRIs. Then, a few months or years later, those findings were either undetectable prior, and are now evident, or findings have had time to appear.

Interesting how this works but a continuing education in itself.

Thx for your responses rendean as they are helpful...... ;)

[rendean]

Many neuros still insist that you fit neatly into the McDonald criteria. I for one, did not. I was lucky enough to have my 6th ( I believe) neuro run all the tests you've had and gave me a diagnosis based on my history. At the time my lesions were "too oval" to meet the criteria and I had no  O-bands. I did have a SLIGHTLY raised IgG level on my LP results.

Eventually, I did have develop plenty of lesions to qualify for the McDonald criteria but by then I had already begin treatment with my new great neuro.

If you are not satisfied with your neuro, so not hesitate to get a @nd opinion if you can afford to. Make a timeline of your symptoms, take your MRI  and other lab results and seek another opinion.

Did they rule out Sjogrens? That was my initial dx too.

Hang in there,
Ren

[HVAC]

The neurologist might want to follow you and see attacks for herself. This is typical. All my tests and history showed MS and I was followed by my MS specialist for a year and a half.

Alex

[hope4normal]

CR,
This was my first post on this site. Maybe it will help.


Hello and thanks in advance for any advice you have for me. I find myself very frustrated today after seeing the neurologist.

My symptoms are numerous but the main ones are nerve pain/tingling in arms, hands, and face. Shocking pain when my teeth close and pain in my throat is the strangest thing. Spilling things and dropping stuff has been my enemy. My memory is shot and brain is very foggy. I can't concentrate some days to save my life. My legs and feet have the crawling sensations especially while taking a shower. The list goes on and on and started last month with a 20 day headache and ended with neck spasms that lasted a week.

The last two years I've been feeling pretty good. The three years before that was very hard. My benign essential tremor was terrible, passing out was scary, and I was falling down all the time. I am grateful that so far I don't have those symptoms yet but my other ones are a repeat of last time.

I had a spinal fusion at C5 and C6 four years ago. Supposedly it was to make these symptoms go away. They did for a few months but came back. I also have migraines with aura, two already this week. Of course all my symptoms are blamed on these two things.

I've been cleared by a dentist, allergist, ENT dr, opthamologist, OT(no carpal tunnel), nerve conduction test says no nerve damage, CT scans on neck and face are good, barrium swallow was ok, but I'm still in pain. I've had 10 blood tests lately and they've all came back normal. ANA, heavy metals, celiac, B12, vitamin d, etc..

Here's my  second MRI:
There is no acute hemorrhage, edema, herniation, or midline shift. There are no findings of acute large territory infarction.  A prominent development of venous anomaly is seen involving the left cerebellar hemisphere. CSF-containing spaces are within normal limits. Suggestion of interval development of a few new foci of T2 and FLAIR signal abnormality within the supratentorial brain, best seen on image 72 series 502 within the superior left frontal gyrus, superior left corona radiata, left posterior corona radiata, and approximating the right corpus callosum. Small focus of left periatrial FLAIR signal abnormality is also noted, new since the prior examination. None of these regions demonstrates definite enhancement or restricted diffusion. No definite foci of T1 hypointensity is noted to correspond to these lesions. The patient's known right frontal lesions, previous a seen, are grossly stable in size and signal.

Impression:

Mild interval increase and number of the patient's T2 and FLAIR signal abnormality is within the supratentorial brain. Although this may be partially related to increase and magnet field strength, interval changes is not excluded. Differential considerations may favor that of a demyelinating process given the locations near the periatrial white matter and corona radiata over that of prior trauma, infection, vasculitis, or migraine headaches. Consider referral to neurology for further evaluation if clinically indicated.

Now I'm waiting to get a LP and a little worried because the neurologist still thinks this is because of migraines. Can migraines really cause this much havoc on the body? Even with the fusion I don't think it is the source of my problems. My hardware looks good and cervical spine appears fine. Thanks again for reading all of this. Any ideas?

[ConfirmedRachel]

Hi hfn,
I'm relatively new to all the medical stuff and terminology on MRIs myself and was dx with MS in Feb earlier this year.
There are a few things which flag to me, but I'd say if you have symptoms which you can also post up on this forum, those with very good medical knowledge may be able to give a clearer idea.

Similarly, any physical assessment and outcomes you've had with the Neuro will also help paint more of a picture.

You can be sure, if someone here is able to help you translate what you're reading, it'll be on this forum.  You managed to find a really supportive and caring bunch of people to interact with.

Take care, and hopefully you'll have some more info you can add.

Nx