ms, or not ms?

[rjmccully2669]

I had the mri done for ms and the results was "demyalation cannot be ruled out".
My primary says it means I have ms. The neurologist said it is perfectly normal, except that I must have had a brain injury.  Now what fo I do?

[davincidanes]

No one's pain and frustration is a waste of time.  We are all here to try to support each other in our quest for answers.  I too am in limbo, but realize that maybe life can be better down the road if I let the right MS Specialists help me. It's taken me 8 months to get an appointment with that specialist, so I can only hold onto hope.  No one 'wants' to have MS... but we do want answers, and a potentially helpful treatment plan that we can move forward with.  

Please don't give up. The one thing that this group has taught me is that I have no choice but to be patient.

Today I commemorate the 3rd anniversary of my adult son's death. That may or may not be harder than what you are going through.  You may have things much worse than I do.  I don't know you, so I don't know. But I do know that all life has value and all of us deserve the best quality of life possible.

Please hang tough and let the people here help you if they can.  

Hugs,
~Linda

[rjmccully2669]

Yep. That's what I am saying. 40+ years of beating my head against a brick wall is enough.

[kwarendorf]

I'm a bit confused. Are you saying that you are too old to bother with finding out what's wrong and that even if you did find out knowing would change nothing?

Kyle

[HVAC]

I get your frustrated, We all want to know what is wrong with us. I was giving up on the MS quset. I told an Neuro Opthalmologist I was through after my neurologist said I did not have MS. The NO said oh you have MS you have to keep going until you get a diagnosis. I got a MS Specialist. It took another year and a half of tests but I was diagnosis. It took me six years to be diagnosed with cancer. I was ready to give up then as well. My doctors thought I made stuff up until the cancer was found. I only wish in both cases I advocated more for myself. I just went along with what the doctors said. You have to be your own advocate. Having kids is rough especially when you do not feel well.

Alex

[rjmccully2669]

I walked out on my neurologist. When I asked about my losing my short term memory for 3 days, she said that was the most common complaint she hears and that it really isn't the problem.
I lived thru 3 days of not knowing where I was, couldn't talk and had no balance and she is going to tell me it wasn't a real problem? I am too old to bother with and it won't change anything anyway.

[kwarendorf]

Hi RJM -

The search for answers to neurological issues can be long and frustrating. Finding the right doctor is crucial. It does not sound like your PCP and neurologist are doing you any good. It doesn't do anyone any good for doctors to voice opinions they shouldn't (you PCP) or dismiss MRI findings so quickly (your neurologist).

We understand the frustration because we have been trhough it. You need to find a neurologist that will listen to you. THe only way you will get answers is to keep asking questions. A good neurologist will listen to you questions and answer them.

Kyle

[4happygnomes]

I don't have any sage medical advice because like you, I am trying to push for answers on what is wrong with me...frustrating and maddening!  .  My last Neuro said he would see me in 6 months since he couldn't figure out how I went from a healthy active person with no prior medical history to my current  symptomatic state.  My family ,my kids and I don't have 6 months to wait  for "further developments"...so I thanked him, went home and made another appt with a different Neurologist.  I'm just another patient to him, but I'm a wife, mom and the person living in this body.   If there are more tests that can be done and more blood to be drawn to get to the bottom of this, I'm doing it!  

It sounds like you've been a fighter from a young age and have been through some seriously challenging times!   No one knows your body better than you and no one is going to fight harder for yourself, than you.     It does matter, don't settle for anything less than what you deserve and don't give up!!

[aspen2]

Don't give up.  Hang in there.  Limbo is truly awful - I've been there for two years.

Every medical professional I see now assumes ms (although I had a few suspicious of psych issues earlier on, a psychiatric consult took care of that).  May 2013 I had mris where the radiologist impression was "patient has met McDonald criteria (2010) for multiple sclerosis".  My neurologist disagreed.

At my most recent appointment, he has finally decided to do an lp despite my lesions being atypical, in his opinion.  This is because of further deterioration of my right side.

If your mris aren't textbook, it can be a long, frustrating process.  I recommend a counsellor (never thought I'd need one but I've seen one for a year now), a psych evaluation (very helpful to have in your chart when the next er doc goes down that path!) and to stay networked with other folks in limbo.  It helps to know you are not alone.

(((Hugs)))

[rjmccully2669]

I give up. It obviously doesn't matter anyway. I have had what ever this is for 40 years and I am SO done! First it was I was just stressed. Then it was Just a worried new Mom, then it was anxiety because I had a chronically ill child, then I was just upset because I took in my sister's children, then I was anxious because all the kids were now in school and it depressed me........need I go on?
None of that explains any of my symptoms. It's all a total brush off because what I am going thru doesn't matter. I can't hardly walk anymore. A year ago I walked 6 miles a day and did a 12k. But it is nothing to worry about. I suppose now it'll be because I am old!

[jensequitur]

Personally I think the neurologist is overlooking your neurological symptoms, and your primary is assuming too much! Definitely go and see another neurologist. I wouldn't fire the primary, tho - I think he's doing all right.

Typically when going through the testing for an MS diagnosis, an MRI is ordered. 1.5T is the standard, but when the spinal cord is involved, a 3T is better. If the MRI indicates that there's lesion activity, or demyelination, then a spinal tap is ordered. The spinal tap gets fluid from the spinal cord and tests it for oligoclonal bands. An oligoclonal band is a protein generated by an antibody in the fluid. There will be one band per antibody, which means that your blood-brain barrier has been breached that many times. I have five o-bands, which means that five viruses have breached my blood-brain barrier.

Demyelination is suspected when there is enhancement of the white matter in the brain. MS activity is different from other kinds of disease activity. MS attacks white matter that's adjacent to blood flow, so you'll see more disease activity in the nerves leading to the eyes, and periventricular activity because of the proximity to the ventricles.

For MS activity your best best is just to Google it - you'll find lots of images that show you what MS lesions look like. Take a look at my profile - I posted some pics from my last 3T MRI that will help as examples.

Good luck! Sometimes it takes a lot of work to get a diagnosis. Obviously a lot of people are sore about this subject.

[essdipity]

I don't see how immisceo's comments can be interpreted as meaning you want to have MS. She's quite correct--your primary doctor should not have told you you do. The radiology report says demyelination cannot be ruled out, so presumably the MRI results could have other interpretations as well. And although MS is the most frequent cause of demyelinating placques (if that's what yours are), it's not the only one.

If I were you I'd see another neurologist, MRI disk and report in hand, and ask to go over it with him or her. Any good MS neuro can read MRIs and will be willing to do that.

In MS, though, the MRI is far from the only piece of the puzzle. If you have not had an extremely thorough neurological office exam, that should be first on the list. There are other tests that can find corroborating evidence as well, but no one aspect is completely definitive. MS is a complex disease, and everyone's disease is different.

Please do not be hurt or make assumptions about comments you get here. This is an MS forum and we do our best to be factual with scientific evidence. I'm not sure what you expected but nothing personal is intended.

ess

[immisceo]

I do not think you want MS. I am simply concerned that you have a primary care physician making concrete statements that profoundly overreach their areas of expertise.

I understand you want answers. I certainly would too. Your MRI at present sounds inconclusive. This is why I suggested pursing a second opinion from another neurologist who might be a bit more aggressive in following up your symptoms regardless of what they feel the MRI indicates.

[rjmccully2669]

There was more to just going to get the mri in the first place. You seem to think I "want" ms. I do not. I simply want to know what is wrong. I have no balance, vision problems,chronic pain, extreem weakness, muscle loss and much more.
I suppose the dammage that could be from getting hit when I was 14 months old, hard enough to break my jaw on both sides, or from when I was in a coma at 4 years old, or maybe from the car wreck where I went thru the windshield, breaking my neck  could that still show up after 50+ years?
Maybe I should see a shrink "if I really want my pain to go away"
I have Osteo/psoriatic arthritises, fibro and Sicca syndrome, so I know I have real reasons to hurt. I didn't know it could get so bad it could be crippling, cause short term memmory problems bad enough to not know where I was for 3 days and to no longer drive, because I don't know when I am actually stopped.
thanks for the pep talk.

[immisceo]

You fire your primary! MS is a complex diagnosis to make, usually involving multiple tests. It is NOT made by a non-neurologist. I presume it was a brain MRI. The results simply mean what it says. Past or current inflammation to the myelin sheath in your brain can not be ruled out.

But whatever was seen might be due to something else. Also, there are more causes of demyelination, even if that was 100% what was seen, besides MS. This is why we have specialists! By all means get copies of your MRI and get a second opinion if you feel unsure of your neurologist's assessment, but 'can not be ruled out' isn't particularly strong language in terms of MRI reports.