Has anyone had similar symptoms?

[twitchychick]

Hi all. I am mainly trying to find out which forum I should actually be on. So hope you don't mind some questions here. Not sure if I am neurological or muscular or neither. About a year ago I was having terrible symptoms: weight loss, tremors, night sweats, facial pain, twitching, cramping, etc. After numerous tests to rule out hyperthyroid (sister has Graves) I was seen at Mayo Clinic in Rochester. More tests with endocrinologist, no thyroid problem. But was found to be in full blown menopause at 43 (long story) which was unexpected. I was sent to neuro to do some quick tests before I went home. She saw me briefly, ordered some tests and this was what her diagnosis reads: ...reflexes that were slightly brisk. She did have moderately decreased vibration and joint position sense ath the toes, but was unclear as to the reliabilit of her examination as her gait exam was normal. She scored in the 95% on the vibration which is borderline, but I think essentially normal for her. WTH????? I don't see how she knew what was "normal" for me since she just met me. I didn't even spend 30 minutes with her. She also said there were mild abnormalities on the cramp fasciculation study that might suggest peripheral nerve hyperexcitability. My EMG report showed no trigeminal neuralgia but reads "a cramp fasciculation protocol demonstrated some after discharges lasting 2-3 seconds following low to high frequency stimulation." Huh?

I guess my question is should I have gotten an MRI or ct scan? They did neither. I had an MRI several years ago when my migraines became significantly more frequent. I used to get 3-4 per year and started getting 3-4 a month. I have the kind with the aura. That was normal. But should it have been repeated at Mayo? I kind of went there thinking Oh now they will tell me what's wrong. I'll finally get some answers. But my appt. were made with the endo, and the neuro consult was after we had been there nearly 10 days! So we were ready to go home!!

I have an appt with a new neuro who specializes in "movement disorders" November 15. He is much closer to home but still 2 hours away. I was wondering if there were specific things I should ask or tell him about that might help us get some answers, sooner rather than later. From what I have read from the different forums, these kinds of disorders take a lot of patience to be diagnosed. I'm just trying to be as informed as I can when I have this next appt.

Thank you for any input you can give.

[twitchychick]

Thank you so much for the reply. I guess I was expecting more from Mayo because they diagnosed my sister with her Graves. She has had 3 or 4 surgeries on her eyes. She was a very difficult case and they were so great with her... you know the rest. The neuro consult was doing research and was not available to give me my results. But she didn't want anyone else to give them to me and so we waited an extra day just to go over them with her. She basically told me to get off all my current meds and then try a membrane stabilizing agent. And I was welcome to come back if my symptoms persisted. NO THANKS! After I got home and googled her I found her wedding site. It was pretty detailed with the info so I guess that and her research were why she was so busy. :)

I have pretty good hope for the new appt. But not holding my breath as I know it can go a million different ways. I just would like to know if it's neurological or muscle related and how to manage the pain. When I push myself on my good days I pay for it later. Wish I could remember that.

Thanks again for the welcome. TC

[Lulu54]

Hi twitchychick,  I don't think we have met yet, so please accept my belated welcome.  

Yes, you should have had an MRI - especially since you had one a few years ago and comparisons could be made, looking for changes.

We have a saying around here .... hold the Mayo.  We are less than impressed with the work that is  done at Mayo on suspected MS cases.  They have more rigorous rules to go by in diagnosing MS than anyplace else in the country.  Why?  we don't know but suspect insurance pressures come into play somehow.

For the appt I would prepare a timeline of key points of your problems.  This will not only help the doctor but also help you with the memories.

Good luck and stay in touch, Lulu