Limbo help ~

[Sidesteps]

I've been having muscle twitches steadily for months now... I addressed it with my family care doctor in August and after lots of blood tests and trying vitamin supplements that came up with nothing. I asked to see a Neurologist. (I became a little freaked out when I had two weeks of difficulties swallowing.)

After, I finally received my referral to the Neurologist I crashed and burned. I went from having issues of muscle twitches, jerks to overall feeling quite sick and by the time, I was seen by neurologist I was having trouble remembering things, finding words, typing, balance issues, mild vertigo, optic neuritis, weird shooting pains in my body and he said mild internuclear ophthalmoplegia (my right eye wasn't following my left eye correctly.)  I didn't realize that I had clinical signs so it really upset me which I think made things worse as I started having issues in certain stores (I think it was the lighting), having heavier fatigue and my blood pressure went up (is that normal during a flare up?)

The doctor ordered a CT scan (I know, I know) an EEG and VNG. In my follow-up he told me the tests looked fine but said that he'd like to check my neck injury with a cervical MRI and run a muscle disease test (EMG.) I asked about my vision and balance issues and felt dismissed when he told me that I should see an eye doctor and my balances issues weren't related to my brain. (huh?)  He did say that the CT scan showed a few high density area's but "we shouldn't expect a perfect brain." I was thankful it didn't appear that I had a stroke or tumor so I left without satisfaction yet I knew better... because I had done my research and new that MS lesions don't show well in a CT scan.

This last week, I trusted my instincts and decided to get a copy of my CT scan. I was surprised to find that it stated as the conclusion "The brain suggests subtle areas of DECREASED density in the white matter which may be artifact. If there is a strong clinical suspicion for demyelination, MR scanning does offer a better sensitivity to white matter lesions."  

...and why didn't he order an MRI then???

At my EMG testing, I asked the doctor specifically about concerns with MS. He reviewed my file for about 5 to 10 minutes. He indicated it was an possibility and said he wanted to see these other results and we'd talk about more tests. I think I'm going to request a brain MRI next though I'm not very happy with his overlooking MS so I won't be staying with this doctor long term. I have to wait two months to see the MS specialist so I figure the more tests ran before, the better.

I'm still feeling off balance and my vision isn't better. The twitches seem a bit better but are still here, every day. I am getting headaches and I have these weird cold patches that pop up now too --- my hands and feet, usually the right side.

Silly questions:

Should I get my eye looked at by an opthamologist? and have that documented separately? or just wait it out?

What is everyone's experience with the CT scan showing decreased density in the white matter and having symptoms like mine?  I'm mentally preparing myself but I think I know the answer.

Thank you!

[jumpinjiminy]

I'm sorry for the trouble you're having. It can be difficult and trying to have a neuro seemingly wave you off as if something isn't important. They have a lot of diseases to rule out before they can say it's MS.

In the beginning, I was convince I had MS. But now I'm convinced I don't have it. It's been four months now since a wave of symptoms popped up this summer. They still come and go.

The main thing is, you can go see any specialist you want. I did. I didn't wait for my neuro or GP to tell me to look into X symptom by X specialist. I saw an ENT and opthalamologist on my own without a referral - and an MS doc. My neuro laughed and wanted to know how I got in to see him without his referral. "I called and made an appointment?" LOL

When you do this, you're able to go back to the neuro with information that helps them rule in or out certain things. They need clinical evidence to draw a conclusion. If the tests all show up normal, it doesn't tell them anything.

I've had some abnormalities on tests, but nothing conclusive. But even that in itself narrows down the possibilities. Mine has ended up going in a very unexpected direction. I don't mind at all that it has. What is showing up now is much more treatable and controllable than MS.

And it showed up globally over the course of a few weeks to two months before it started to wind down. That was their whole problem, and why they didn't initially run an MRI - because it was a global neurological presentation, rather than a focal presentation.

I was lucky. It looks like mine has found a potential cause for all the trouble within a matter of a few months. And it wouldn't have happened if I hadn't insisted on referrals to other specialists to follow up on affected parts. I was evaluated by a cardiologist, rheumatologist, infectious disease specialist, MS specialist, ENT and an opthalamologist. Ever one of them played a big part in running tests that finally led us in the direction we're going now. The only one I haven't seen is an endocrinologist.

I'm now waiting on a referral by the neuro to see a neuroimmunologist. What he thinks it might be is an autoimmune thyroid disease that is cross reacting with my CNS. And so far, this explains almost everything. There isn't anything I've experienced in the last 20 years that doesn't fall under this diagnostic possibility.

But he warned me that it could take two to three years to finalize the diagnosis and to come back in six months for another EEG. All he needs is an abnormal EEG along with the elevated TPO antibodies, or a positive spinal tap to make the diagnosis.

Yes, I've gotten long winded again. Sorry. My main point was, there are so many things they have to rule out first. It is a long, stress filled, frustrating journey. Even when it looks like they aren't taking it all in, they probably are taking it all in. I'm now starting to see my neuro (who I almost fired Donald Trump style a month ago) as a genius. I don't know that any of the others would have thought of this disease. It's supposedly rarely diagnosed because it's almost unheard of. It would appear the numbers of people showing up with it are growing, however.

All it took was the one right blood test, and viola! There was a valid explanation staring us in the face. Not a solid, 100% this is it, moment, but definitely and "aha we have a solid clue" moment.

Hang in there. You will find a lot of support, help and information here as you travel down the road to naming the mystery disease. Hugs.

[Sidesteps]

I did... had the VNG. I'm not sure what that tests specifically for - truthfully.

I can feel the changes in my eye ... at times it feels "off." They best explanation is that it feels heavy, blurry, maybe a bit numb?, and like my peripheal vision isn't the same. It does hurt a bit ... more some days than other's.

[COBOB]

Sorry, I went back and read that you had a VNG (Videonystagmography.)  That tests the eye muscles and a specific set of cranial nerves.  If there is any concern that you may have had Optic Neuritis at any time, the Neuro-Ophthalmologist will most likely want an VEP to test the Optic Nerves and Optic Tracts.

Bob

[Sidesteps]

Thank you Bob... I have that referral to the neuro-opthalmologist coming now. :)

I will also request that MRI now as the CT scan appears to be an indicator of something further he might have missed initially.

[Sumanadevii]

If these neuro's want to sit on their duffs for years before making a diagnosis, they should then get to feel the damage done to our bodies...six, eight, ten years out.  I sat.  I waited.  Six years of damage to me.  I trusted a physician to make the right choices.  NOT today.  If I don't agree.  I move on.  Call me a doctor shopper.

[COBOB]

CT scans are xray and pretty poor at demonstrating demyelination.  The CT contracts is a radiopaque iodine based solution (some people call it a dye, but it really isn't) that is used to highlight the vascular and any bleeds in the brain on CT.  CT works best for imagining high  density objects like hard tumors and bone.  

MRI looks for water.  Little differences in the amount of water, like the difference between healthy myelin and a demyelinated plaque (lesion) show up very well on MRI.  MRI contrast (Gadolinium) isn't a dye either.  It is a paramagnetic compound that can spin faster than the water molecules in the magnetic field of the T1 sequences on the MRI.  GAD can be used to detect new lesions where the blood brain barrier is leaking,

So the answer is CT is used for looking for tumors, big brain bleed, some types of stroke, high density objects (things that have little water or air.)  MRI is more subtle.  It is not a real image like xray.  They are pretty useless for surgery, etc.  They work by exciting water (and other things) and listening for the the radio waves that they generate (molecular precession.)  Then the computer takes the x,y,z information and the signal strength and "derives" an image.  

So it depends what they are lookin for and how they want to use the image,  That's what doctors have to think about when they are trying to decide if they want a CT or an MRI.  (At least you want to think so.  They are taught this and after a while it gets as simple as tying your shoes.

CT scan "decreased density" can be caused by gliosis.  Gliosis a proliferation of astrocytes in damaged areas of the central nervous system (CNS).  This is common in many people with MS and can be caused by other conditions.

You want a Neuro-ophthalmologist to examine your eyes and read your VEP.  They specialize in vision issues caused by both the eyes and the visual centers of the brain.  

Hope this helps.

Bob

[HVAC]

I never had CT scans only MRIs of the brain with contrast. The first was not MS protocol because they thought it was something else. All others were MS protocol. When they suspected ON I was sent to a Neuro-opthamologist. My eyes do not track together but they have never found evidence of ON.

I went to Neurologists and was tracked every six months for several years before everything was ruled out and MS was the only thing it could be. It took several positive brain MRIs, Positive VEP, abnormal reflexes etc., lots of clinical signs over time, and finally a positive Lumbar puncture, and lots of negative blood work for tons of other conditions for a diagnosis of MS.

It often takes years for a diagnosis. I wish I understood that when I was going through diagnosis. It would have helped me to know the way Neurologist think is "It is not MS until it is". This is a concept hard to grasp for us mere mortals but that is how it goes.

Two months is good for an MS Specialist the average wait is six months since there are so few.
Good luck.

Alex