Need Some Opinions, Answers, Reassurance...
 

Hello! I'm new here and am experiencing strange symptoms that I cannot get a handle on! I've been to neurologists, however I am a new immigrant to a country in which I don't speak much of the language or understand the health system, so progress has been slow. I'm hoping you all may have suggestions that can help me make progress in finding a diagnosis to start feeling better! Here's an overview:
-26 yr old white female. Only medical history is major depressive disorder for which I've been medicated for about 10 years.
- extreme fatigue (sleeping 12 hours through alarms and still needing a nap and still not rested, walking one flight of stairs and needing to lay down, tiring quickly with everyday tasks, falling asleep driving but being unable to sleep at bed time...)
- intermittent tingling in portions of face, hands and arms, one leg, neck and back
- constant consistent pressure headaches and often tenderness at temples or base of skull
- tremor in hands, was worse in left but suddenly began in right recently. Worst when flexing my fingers inward... Becomes totally uncontrollable and more violent. Makes it hard to write, draw, and perform small movements involved in playing my instrument (I'm a violinist)
- memory is just awful. Word recall really slow, forgetting tasks in the middle of performing them, foggy thinking and trouble being focused for even small amounts of time
- heat and cold intolerant... Suddenly the past few years I've been just knocked out by higher temps (even when others don't seem to feel hot I do...). Started happening with cold too.

These are the most worrisome to me... The ones I don't understand and are causing me the biggest issues. I've had an MRI done (no results yet, i dont quite understand how to get them...) from a neuro who mentioned MS and encephalitis as possibilities. The only thought I've had us of it being thyroid related since thyroid issues run in my family.

Would be grateful for any insights anyone may have (what doctors to see, possibilities to pursue...) thanks!

I'm sorry you haven't had any responses. I would suggest getting copies of your MRI -- go to the hospital where you had the MRI done, and ask for copies of the MRI. Tell them you're going to get a 2nd opinion from another doctor, but tell them you don't know WHO you're going to yet.

Then ask your doctor to refer you to a DIFFERENT neuroSURGEON -- NOT a neurologist. There is a difference. Make sure it's a NEUROSURGEON. And get his opinion on the MRI. Take someone with you so they can write down what he says, and YOU write down stuff too. Then get one MORE opinion from a DIFFERENT Neurosurgeon. You need at least 3 opinions from Neurosurgeons, so that you can make an education decision or you can be secure in the diagnosis. If all 3 think you have MS, then it's pretty safe to assume that's what you have.

If only one thinks you have it, chances are you don't and you'll have to keep looking for a diagnosis. :(

Best of luck to you in your search for a diagnosis. I do hope you are successful. PLEASE let us know what you find out, will you?? Or you can private message me, because I REALLY want to know!! God bless you and please take care. And again, I'm sorry it's taken so long to get a response. Hugs, Lee ;)

Hi Lee! Thanks so much for your thoughtful response! I did get a copy of my MRI and had it looked at by the hospital's head of neurology. He said its clean and everything should go away on its own. I would feel better about that if I hadn't been told the same thing 4 years ago when these symptoms came up the first time. They did go away, but obviously have returned and are much more aggressive and damaging to my daily life than they were the fist time. I am going to have my usual neuro look at it this week as well. Normal is good, but I don't want to just keep waiting for symptoms to go away and then have them inexplicably return with a vengeance... If this will be the case, I want to be proactive and get an answer sooner rather than later....

If this is an OLD MRI, it sounds like you need an new one! I would ask your doctor to run a NEW MRI and see what it looks like. Taking an old MRI to a Neuro isn't going to do much good. You need a new one.

See if you can get your doc to order a new one and take that to a Neurosurgeon. You'll get better answers. Let me know, will you please? I'd really like to know. God bless! Hugs, Lee :wink:

Hi,
I am sorry you are suffering with these symptoms. I would suggest a neurologist who is also a movement disorder specialist. Some of these symptoms sound Similar to my Dads. He was diagnosed with Parkinson's disease with dementia or Shy-Dragers. There are no tests that can confirm a diagnosis of either one of these diseases. They just take an educated guess according to your symptoms. With M.S they have tests that can identify that diagnosis for sure. I think it shows up on MRI. Possibly in blood work as well. I hope you can find a diagnosis soon and get the correct medication/treatments to start making you feel better. Do you think it is possible that you may have a sleep disorder? REM sleep behavior disorder (where you act out your dreams and most of them are violent) is what they call a pre-cursor to having Parkinson's Disease. I also have this REM sleep disorder as well as my dad. It is possible that I may have the same thing as him as it is hereditary but I do not have enough of the symptoms to be diagnosed with it yet. I understand how frustrating it is to try and get a diagnosis and try and figure out what kind of doctors you need to go to. Lee had great advise also. she is a wonderful, caring lady who has been helpful to me. i wish you the very best. Please keep us updated. Don't give up. There are answers.
Love,
Brain :hug: