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Multiple Neuros
cheesegrater posted:
Anyone gone through multiple Neuros, One an MS Specialist with UCSF, everyone's scratching their heads;

have white spots on MRI (non-specific), heat reaction, numbness, loss of balance, verticle diplopia, was incapacitated for two months in 2010 due to all symptoms and exhaustion to the point of almost passing out, lost of sense of smell/taste, can burn myself without knowing it, enlarged thymus, afternoon exhaustion, confusion, involuntary body spasms (head, eye/eyes, shoulders, arms, sometimes legs). I have about an hour of reading before I can't make out the words, eyes hurt, headache. About two hours of shopping/moving around in social situations before I need to rest.

My vision has also shut off entirely twice for a few seconds. Have migraines, primarily ocular.

2 and 1/2 years, no diagnosis.

Working on a referral to the MS Spec at UC Davis now. I do think sometimes I don't present myself accurately when I'm in my appointments. But I would think they would account for that given the difficulty with communicationt that can occur....
hackwriter responded:
You've written out your symptoms very clearly here, why don't you write a script for yourself and bring it to that next appointment? I always bring a cheat sheet to mine, though I do rehearse what I'm going to say over and over prior to the appointment, too.

The only challenge left would be whether the doc asks you questions you aren't anticipating, lol. Let us know how that appointment goes.

cheesegrater replied to hackwriter's response:
You're a genius! I will do exactly that.
Listener1308 responded:
Dear Cheesegrater, I can certainly feel what you are going thru, I kinda of feel like I'm in the same boat. I have three pontine lesions, severe tremors in my hands, they are there about 50-75% of the time, now my family tells me my face and mouth is twitching as well as my eye, spastic muscles in legs, off balance all the time, luckily I have not broken anything yet when falling....Vision goes thru periods of blurriness when I cannot read at all, severe headaches with eye pain, I just saw the eye dr and he told me I had optic disc pallor which could indicate a past inflammation of the optic nerve. I have had fibromyalgia since I was 28 with CFIDS and now Im 57. Won't do a spinal tap because Im on coumadin. I had an appt with a MS specialist and when I got there another dr. saw me who was NOT an MS specialist and it was a waste of time....So my 88y/o mother was diagnosed with Leukemia and AML about 6 months ago so I have put my own problems on the back burner until something major happens then I will re-proach it because Im sick of the whole mess and trying to see someone who specializes in it.....My eye dr. feels I have MS, My PCP feels I have MS....I just give up for now and take care of my mom the best I can and try to forget about my own problems.....
msbucket1 responded:
Our MS website has some tips that may help you. Check out "MS know-how"
There are other disease's that are similar to MS, such as Devic's disease, please explore all the options.

Don't give up and keep searching until you find that answers that you need!
cheesegrater replied to Listener1308's response:
I agree with ms bucket, while sometimes I think a person needs a break from the stress of Dr's looking at you with suspision (I know that was spelled wrong, one of the new problems I have) in their eyes and doubts in their hearts, that alone is exhausting. Much less helping an aging and ill parent.

Believe yourself. Trust yourself. Keep trying. You're worth it and will be much more helpful to yourself and those around you when you find some help.

Hang in.

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