OK Dis Drs. I need your thoughts on this.

[laura001]

Christine, My last blood work showed my tsh at about 30. That was about 2 months ago so I haven't been retested since my dosage change. I know I need to get in and have that done. They did complete blood work on me last time too, both at the Drs. office and the ER. My Dr. sent me to the ER because of my dropping problem and I was having a horrific headache at the time. All tests were normal.
I see a rhuematologist for my fibromyalgia and my regular Dr. is actually an internal medicine Dr.

Disneynutt.....did your mom have a normal MRI though? I think that's part of the problem is mine shows normal. I also get numbness/pins and needles on the left side of my face and arm, but that seems to not matter at all.

I had a migraine one time that mimicked a stroke. Kept me in the hospital 3 days till they determined it wasn't a stroke. I never was convinced with that diagnosis because I've had problems ever since then.

It's so aggravating. I probably sound like a hypochondriac to my Drs office LOL
How can one person have so many symptoms with nothing being found???

Please seek a second opinion!

 

[RadioNate]

My eyes are OK, except on ocasion I get what I call a "dead spot" it's like someone put a little dot in my eye and I can't see where it blots it out. I mean I can see out of the eye, except for this one little area in the middle. And it's only my left eye.

I do drink caffeine free diet coke, but hardly enough to do anything. Maybe a glass or 2 a day.

Myesthenia Gravis which I think a poster here has shares a lot of symptoms with MS but is much more rare and frequently mis-diagnosed. I think less than 35k Americans have it, so in many cases Dr's aren't even familiar with it. That's the only reason I mentioned it. Loss of muscle tone around the eyes and in the optic nerves and internal muscles is a big indicator. Dr's who are expert in the disease can usually tell the difference between MG and MS just by looking at a patients eyes.

If you don't mind I'd like to email my cousin (my aunts daughter) about this. She is in research and deveolpment for a major drug company and had thyroid issues as well. I know that she did some gene and DNA research on her own that indicated that there was a link in patents with Graves diseases (hyper-thyroid) and autoimmune diseases that affect the nervous system. I want to confirm with her that I'm remembering what she said correctly.

Hopefully you'll know more after seeing the new neurologist.

I know for a lot of patients getting to a dx is the most frustrating part. The know things aren't right but keep getting told they are ok. MS is such a scary dx but I do know with treatment a lot of people who are living very normal lives.

 

[phorsenuf]

Myesthenia Gravis which I think a poster here has shares a lot of symptoms with MS but is much more rare and frequently mis-diagnosed. I think less than 35k Americans have it, so in many cases Dr's aren't even familiar with it. That's the only reason I mentioned it. Loss of muscle tone around the eyes and in the optic nerves and internal muscles is a big indicator. Dr's who are expert in the disease can usually tell the difference between MG and MS just by looking at a patients eyes.

If you don't mind I'd like to email my cousin (my aunts daughter) about this. She is in research and deveolpment for a major drug company and had thyroid issues as well. I know that she did some gene and DNA research on her own that indicated that there was a link in patents with Graves diseases (hyper-thyroid) and autoimmune diseases that affect the nervous system. I want to confirm with her that I'm remembering what she said correctly.

Hopefully you'll know more after seeing the new neurologist.

I know for a lot of patients getting to a dx is the most frustrating part. The know things aren't right but keep getting told they are ok. MS is such a scary dx but I do know with treatment a lot of people who are living very normal lives.

Yes, waiting is the hardest and the not knowing. I think (even tho it will stink) if they do diagnose me with MS I'll be relieved to finally have a diagnosis. Knowing something is wrong but them saying no is what is the worse. Do we not know our bodies the best?

My brother went to his Dr and said something was wrong with his kidneys. They tested for a UTI and bladder infection, but everything was fine. He insisted something was wrong. They ended up doing an ultrasound and found a cyst on his kidney. The Drs were amazed because they said there was no way he could have felt that was there. He said he just knew something was wrong. Weird.

Anyway, I would be very interested in what your cousin has to say. I have heard that if you have one autoimmune disease you are more at risk for another. I have also heard of many people who have been diagnosed with fibromyalgia later being diagnosed with MS. Coincidence or precursor I wonder.
I still haven't heard back from my Drs. yet about seeing the new neuro. Hopefully it will be OK.

 

[Pin Wizard]

I hope (and will say a prayer) that the new doc will come up with an accurate diagnosis! My oldest sister had MS. My sis-in-law has Graves. Hope you get your appointment quickly!!

 

[popeyeohoh]

That sounded like me 11 years ago. Had MRI. One quack said MS. Diagnosed hypothyroidism. I have never gone back to what I would consider normal. (pre diagnosis)

 

[cats mom]

I'm glad you're going to see another neurologist. Hopefully they'll be more interested in taking a complete history - that definitely includes you reporting ALL your symptoms.

A big part of the diagnosis process for MS is tests to rule out other things.
There is no one definitive test FOR MS.

I know there were revisions in the Mcdonald criteria for diagnosing MS in 2005. Sometimes neuros are spread pretty thin and if they don't specialize in a certain area they might not be on top of all the changes.

You didn't say if your MRI was of just the brain or of the spine too, or whether it was done with and without contrast - that all plays into it now.

Unfortunately a lot of people who are eventually dx'd with MS have spent quite some time in limbo. Some not treated any too well by medical professionals along the way.

My DD was dx'd with MS.
We're fairly new to it ourselves and she is one of those rare (although becoming less so... unfortunately) teenage cases.
My way of coping with her dx was to read as much as I possibly could about it. You know, the old knowledge is power thing.

Anyway, while I can't dx - your symptoms sure sound familiar.

Feel free to PM if you have any questions and I'll answer the best I can.

Good luck to you. I hope you get some answers soon.

 

[liamsaunt]

It could be anything of course, but it sounds like it could be MS to me too. It was the first thing I thought while reading your original post. My Dad has relapsing/remitting MS, diagnosed in 1989, and has many of the same symptoms as you (along with twitching and numbness in the right extremities when he is having an episode). It took a spinal tap to diagnose him, the mri did not show the disease. I'd be happy to share more details of his experience if you think this could be helpful to you.

 

[Obi-Wan Pinobi]

Lauri has Fibro on top of her other conditions and it does give her spells where she is very weak in her hands. She can barely hold onto things during these episodes

 

[phorsenuf]

catsmom- I had an mri of my brian only without contrast. I don't remember when my back/spine was done last. Should I get one with contrast?

liamsaunt- any more info you can provide would be great! Thanks to both of you!

 

[phorsenuf]

Actually, I should say thanks to all of you who have provided such great feedback! I'd really like to hear more if your are inclined to share.

I didn't hear back from the Drs. today so I'm hoping for tomorrow.

 

[cats mom]

Hopefully you'll be able to get in with the new neuro and they'll be on top of all the testing.

With your symptoms it's a bit surprising that they would say it's not MS without running all the tests.

My DD was really nervous about the lumbar puncture (spinal tap) but she said it was not nearly as bad as she had imagined.
I brought her home and we had a mega movie party and I really spoiled her for a couple of days to make sure she rested and didn't get the killer headache afterwards.

It's rare, but there are cases of people having lesions in their spinal cord without any evidence of brain lesions.
The spinal lesions do tend to be tied to balance/mobility issues.

Even more rare, but I have heard of people who are dx'd without evidence of lesions at all.
Very small lesions can be missed, but can still cause symptoms.

Also some of the newest research suggests there may be underlying damage taking place early on that may not show up on MRI. Of course that's not widely accepted in the neuro world, but might explain why it sometimes takes so long to get a dx if they're right.

As for the contrast - it's used to help show whether the disease is active at the time, or has been within the past 4-6 weeks.
If they didn't find any lesions at all and you don't have anything new going on then it's probably not necessary. No need to bring on the needle if you don't have to.

My DD's neuro had her 1st MRI both with and without contrast - but he was being very proactive because of her age.

I have chatted online with folks who have several other things going on with the MS and it does really complicate things. When they have a new symptom they don't know which disease to attribute it to and sadly it's sometimes even tougher to get their doctors to come to a consensus and help.

Sorry, this got really long and is probably more than you ever wanted to know... especially since it could be something completely different.

I hope your docs can figure out what's going on.

 

[Ladyhawke10]

Oh gosh, I just went through something like this last year. Please don't worry yourself too much about it being a disease like MS unless you know for sure. That will just cause undue worry that you don't need when you really don't know anyway. Last year I had weird symptoms that started suddenly: all-over-itching, feeling like ants or bugs were crawling on me, even "biting" me, feelings of numbness between my knees and ankles....it was unbearable and I was very scared. I couldn't sleep because I was so itchy sometimes, like itching powder was in my bed. I feared that it had to be something serious to have such weird and chronic symptoms. Believe me, in one year I had about every medical test imaginable...including two MRIs (brain and spine) with and without contrast, batteries of autoimmune tests, every endocrinological test imaginable (ruling out diabetes, hepatitis in its various forms, blood disorders, viruses, allergies, organ problems, cancer...) etc etc etc. The good news is that everything came back normal except for my hashimoto's (hypothyroid). However, the doctors don't think my thyroid problems are causing the symptoms...they think is a maladaptive stress response to the way of my body metabolizes my stress hormones, and is affected, but not caused by, my thyroid problems. Anyway, it turned about to be harmless and really has eased up after about a year of symptoms...now the itchiness (which is particularly around my nose these days) comes and goes once in a while, but it's no longer chronic.

Please don't worry that you have MS unless you know for sure. I did that and wasted what could have been a much happier year. It could turn out to be something slight. Good luck

 

[phorsenuf]

Catsmom-thanks for all that info....wasn't long at all.

Ladyhawke10 - I'm not worried at all one way or another. I know that probably sounds odd and all but I know there is something going on whether its MS or one of my existing conditions. I have come to terms many years ago with my health and whatever happens happens. I would just like to have the proper diagnosis so it can be treated effectively and hopefully relieved of some of these symptons.
I try to control my stress as much as possible because that really does put a strain on my body. It s one of my biggest causes of my migraines. I have learned how to deal with it as much as possible and stay away from things that make it worse.

 

[nliedel]

I have MS and I am not trying to diagnose anyone here and am NOT a doctor but my first MRI came back fine, it was not until they did an MRI of my neck that the lesions were found. If you are not getting the answers you need then talk to someone else.

Even with MRI's MS is a bugger to diagnose and while your age is way at the upper end of when symptoms tend to appear it's not out of the ballpark.

Yes, I am an MS patient and I see it all over the place. LOL!

 

[phorsenuf]

I have MS and I am not trying to diagnose anyone here and am NOT a doctor but my first MRI came back fine, it was not until they did an MRI of my neck that the lesions were found. If you are not getting the answers you need then talk to someone else.

Even with MRI's MS is a bugger to diagnose and while your age is way at the upper end of when symptoms tend to appear it's not out of the ballpark.

Yes, I am an MS patient and I see it all over the place. LOL!

Thing is though I've had these symtpoms for years, (they've just gotten worse) but since my MRI's come out fine, they don't persue it further. I had gathered up all my medical records and its even noted in there about possible MS.

 

[nliedel]

It took them 12 years to diagnose my MS (remitting repeating which is harder to figure out) *IF* it is MS this is the norm. Someone should MRI your neck.

 

[poohandwendy]

No advice, just sending hugs and prayers your way, hoping you get some answers soon!