We're in this together looking for answers, right? I was convinced mine was MS too, because someone else in the family had it. But then this possibility came up and mine seems to follow this pattern more than the MS pattern. There is no way of knowing. Even the experienced professionals have a hard time sorting them all out. My MRIs are clean too, so I thought just maybe we could be battling the same condition. You never know. The MS specialist felt that after 20 years of symptoms, to not have anything on an MRI made MS a very unlikely possibility.
After that I was just left wondering what else is there? In all my searches on Google early on, I kept seeing this term "Hashimoto's" and "thyroiditis" and skipped right over because "I don't have a thyroid problem." Haha. Surprise!
I'm wondering why your antibody levels would be so high if you had the thyroid ablated. ??? Curious, you might say. What's keeping them up? It seems like they would disappear if there were no tissue left to attack.
Science just really doesn't have all the answers yet.
You have been so very helpful and thank you for listening and responding to me.
I will check out your suggestion and discuss it with my doc.
Hugs,
Pamela
Have they ruled out Grave's encephalopathy?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2876143/
My new endo admitted she'd never heard of it once in all her education until my neuro sent her another suspected case prior to mine.
My neuro in all his education had never heard about it until he found out through a neuroimmunologist that the condition existed. They're just now beginning to think it's a lot more common than previously thought and more cases are being identified.
It's worth checking into, if it hasn't been done already. It's most often a very treatable condition. There are a lot of links out there on google about it. Mayo has a very good roundtable discussion on it in all it's forms they've so far identified. They're working on getting the name of it changed because Hashimoto's isn't the only thyroid condition in which this shows up. It's associated with other endocrine autoimmune diseases as well.
I think the hardest part of this is, I know something is wrong. I not only am experiencing the hand tremors, but the itching is back on my left hand and the ear pain is back in my right ear.
I have researched ms for quite some time, and nothing else could explain all of my symptoms. Each area that could be affected by ms, I have experienced.
slurred speech
nystagmus
optic nerve damage
double vision
hyperreflexia
tremors
fatigue
paresthesia
seizures
vit. D deficient
slow word call
memory loss
lightheadedness
walking on (uneven ground)
unable to lift legs up on own (dead heavy feeling)
I keep thinking that I am going to hit a brick wall again and nothing will show on the mri, and once again I will not have a good solid explanation to all of this. If it's not ms, than WHAT ELSE COULD IT BE!! everything else has been ruled out, all of the blood work I have had and tests are all narrowing in on ms, but past mris show nothing, I just want to have a name for all of this because I am starting to feel that I am crazy and I don't want my family to look at me like I am just looking to have ms. (Why do people think someone actually wants to have a disease that could potentially lead to disability)
I am venting and I am sorry I keep going on, but all of these little symptoms that are happening to me, they all add up to something and I don't know how to explain it anymore.
This is sooooo frig'n annoying!!!
Thank you all so very much for everything, It feels so good to let out that scream every now and then. Ahhhhhhhhh !! LOL
Hope everyone had a great new years!!
Pam
So glad you got an MRI and found a concerned doc. I hope your tests come back clear. Mine did. And initially, it was annoying because there HAD to be something there with all these symptoms, right? Apparently not, and that's a good thing really. It just leaves more questions to be answered and more testing. But eventually, the answers will come.
In the meantime, I wish you peace in awaiting your results.
I had my MRI this morning but of course the tech. couldn't tell me anything. What if it's still clear. Its funny how when you have gone through so many different neuro. signs and symptoms, you almost want something to show, but then again, deep down you don't. I feel so confused.
So I don't know what would be next. This is the part when I just wish I could find out right away and not have to wait.
Thank you all for this wonderful support, I definately feel better knowing I have all of you to count on.
I will def. fill everyone in on the results, whenever that may be.
Hugs, Pam
yes glad you got a good one- the tremors are terrible-hope you get some relief!
Yay! A concerned doc who got the ball rolling and you are on your way toward finding out more of what's going on, Pam!
This is a good thing.
-Shell
Thanks everyone, I actually just came back from seeing my regular doc. and she was so concerned she got on the phone to set up my appt. for the Rochester clinic. I am having an MRI done at 8:45 tomorrow morning on my cervical spine and brain. She said she can get me in to the Rochester clinic in the next 2-3 weeks. She wants to get this done before my surgery on Jan. 26.
I am assuming this means something?.
Pam
I smoke too, and this has been one of my big new symptoms this year. Sometimes it's worse on the left and then other times it's worse on the right. I don't have a diagnosed thyroid condition yet, but they're looking into it. When I'm on the prednisone, it goes away. Tapering off, it gets worse again, and is really bad after a hot shower.
My neuro used it as a symptom to validate ordering tests for thyroid antibodies. Other than that, he's not made much of a comment about it. I hope yours is more helpful.
Thyroid should effect both hands. If the left hand is significantly more than the right, you should talk to you doctor. A right sided motor lesion could cause something like that.
Bob
Hey Pam,
This is definitely something to show the doc. in realtime. It's a worsening of a symptom and the cause has to be looked in to.
I always blamed everything on my smoking too. I'm not going to make light of smoking as it definitely worsens many things, but I'd venture to say this is prob. not from that.
When can you get in for an appt?
-Shell