POLL/Neuropathy & Thyroid-Please Join

[msfergy]

Ok I have decided to place a Poll on here myself.
How many of you out there have Neuropathy problems along with Thyroid? If you do give a breif description of the problems and what type of thyroid problem you have. If enough of us out there suffer from this then maybe the Endo's would relate to it, as we can print this out and take it to the Doctor with us. Thanks for participating.

[tsimmu]

Okay ... I'm at my wit's end. I apologize for the long post but thought I should give everyone the complete story. Been to my GP, endo, neuro-ophthalmologist and neurologist and still no answers. I was recently diagnosed with Graves Disease (due to proptosis in my left eye). I've been hyper for over two years. I'm dealing with the eye issue but my recent blood work shows that I'm euthyroid..

Here's my story:

5 weeks ago ... got off tapazole (for my hyperactive thyroid) after being on low dose for two years. At this time I also started taking mucomyst eye drops in both eyes (4-6 times a day) and Restasis eye drops twice a day.

3 weeks ago ... joint and muscle pain, numbness and tingling started ... moved all over my body but starts between my shoulder blades in my back and travels throughout. Started getting mild fasciculations (twitches) all over my body but only during periods of rest.

Two weeks ago... discovered mucomyst is a sulfa drug (I'm allergic). Stopped the mucomyst. Two days later ended up in ER with horrible case of hives and difficulty swallowing. Gave me prednisone and sent me home. Had MRI of brain and eye orbits ... nothing significant found but some mild swelling of my sinuses.

This week ... Muscle fasciculations are constant (only present during rest) muscle/joint pain and numbenss has subsided some but flares and is intense for short periods in my legs mostly. Also having hard time swallowing (lump in my throat feeling) and my voice is hoarse/weak with an occasional sore throat. Also experiencing facial tingling and numbness that comes and goes.

My endo swears nothing is wrong with my thyroid because blood work would show it. Since MS has been ruled out ...  this sounds a lot like ALS? No history of ALS in my family. I'm a female, 41 years old.  Or maybe peripheral neuropathy?

Or yet another option  ... aseptic meningitis from the sulfa antibiotic I was taking for over three weeks. Last time I took a sulfa drug was for my ulcerative colitis seven years ago. That resulted in severe joint pain and muscle weakness ... all that subsided once I stopped taking the drug.

All this stress has resulted in complete loss of appetite. My neurologist suspects aseptic meningitis and wants to wait and see if the fasciculations, numbness, and intermittent myalgia subside. We did a lyme disease test at my insistence but my neuro seemed over confident that it's not lyme (test results are pending).

Can any/all these symptoms be attribuatble to my Graves Disease?? My gut says this is all thyroid related -- but because I'm euthyroid (all blood work normal), I can't find an endo willing to consider it.

I've never been hypo before ... are my symptoms consistent with hypo? My neurologist said the fasciciulations might also be thyroid related.

Any thoughts/ideas would be appreciated. Thanks!

Tsimmu


To:

[DLA]

Has your endo ran antibody tests for Graves?  If they haven't would have this checked out for sure just to rule out thyroid for sure.  After that I don't really know.

The ALS---know my grandfather had the neuropathy but it was not all over at first it was just one hand and gradually moved to consume his entire body.  If it is ALS you should have visibly noticeable wasting of muscle.

Am praying that you find answers soon.
Dac

[DLA]

I had neuropathies with both Graves (hyper) and hypo.  Mainly in my hands, feet, and a lot in my face.  Don't remember the dates, but do remember this very well.

Dac

[msfergy]

Hello and sorry to hear all your problems but that is why I am doing this, I have all them problems to and my Endo. says it isn't my thyroid, I have had numerous test and MRI'S since December when this started, hang in there and any new news you get lets us all know.
I am going to print this all out and send it to my Endo to show him I am not the only one, and I am taking a copy to the internal med doc, she seems to relate to it somewhat and acts like she can help, well byt taking out the thyroid but I don't think that is the answer to taking away these symptoms. Keep watching this post and you can hear about all of us. I get like water running down my leg also and feel drops of water here and there to.

[msfergy]

Also what is ALS? One of my trips to the ER that Doc just told me it looks like I have the million dollar disease, what help he was! But I think he was right, I was having seizer like tremors at that time in the very beginning.

[DLA]

ALS--Lou Gehrig's Disease