update, same 'ol &%$&*

[Guest guest]

Just wanted to update what is going on since my last post. Returned

to the Dr. yesterday to discuss the ongoing problems with vision,

tremors, headaches, chest pain, shortness of breath, etc. etc. etc.,

and it went as expected, NOWHERE!

We started out our usless little conversation as usual before heading

onto my symptoms which obviously don't exist, as I told him what was

going on he countered with simple little explanations which made it

all OK. For instance the tremors which have been with me for at least

ten years but have gotten so much worse of late that it often is

difficult to even hold onto a coffee cup without splattering myself.

His answer?, looks like your using too much albuterol, when I offered

the simple fact that I haven't used albuterol for at least three weeks

he mentioned the advair I use every day. Well, aside from the fact

that I have been using these kinds of drugs since I was three years

old, (that's 45 years for us blue collar morons who couldn't possibly

know anything when compared to a doctor god like mine), so one might

suspect that I would have some idea of what that kind of tremor feels

like, aside from the fact that I have every neurological symptom of

neurosarc and have had for many years, aside from the fact that I was

diagnosed with neurosarc over ten years ago,aside fromt he fact that I

had these tremors even when I wasn't using any kind of breathing meds,

clearly, this is caused by the drugs and I am just too stupid to

figure it out. And when I point out that I HAVE neurosarc as

diagnosed by one of the most respected Neurologists inour area his

answer? (are you ready, this is a really brilliant observation, in

fact my little shriveled brain is still awed by it), " well, I guess

I'll have to go with his impression. " WHEW! That was deep!

So, after being dazzled by this level of brilliance, and after being

told in a most clear manner, that this doctor thinks I am full 'o'

_________well ;you know, he suggested that it must all be in my

" noodle " , (yep, another of those big doctor words), so he wants to do

an MRI of my brain, (probably to see if I have one), which is what I

wanted him to do in the first place, but this was HIS idea not mine!!

The best part of course was when he said that if they didn't find

anything, (not what he's expecting, noooooooooooooooo), then I should

have testing to figure out what kind of memory loss I am suffering

from, (sure as *(%&*%*(& wouldn't be from the neurosarc which he

dosen't think exists in the first place). Now I'm sure he was

dissapointed when he very pointedly, staring me deep in the eyes said

that meant going to a " " " " psyciatric " " " " doctor, and I said, great!

Alas, no big freak out to make his day, must've been a real let down

because he left the room about thrity seconds later with barely a

goodbye. So what did we accomplish? Well, I haven't had an MRI of

the black hole that is my brain in years so we needed to do one

anyway, and I am going to have to have the psych testing anywas as I

am working to get into one of the larger sarc clinics this summer

anyway, so I guess it was all worth it!

[Guest guest]

Earlier this year my Thi Chi instructor was doing a demonstration for the MS Society. The program was open to the public so we went to the meeting from the time it started.. The speaker was from Oxford University, his specialty was MS which he had been working with for over 30 years. One of the other speakers was a neuro psych therapist. I had never heard of this specialty. He went on to explain what they were involved in. They worked with patients who had all kinds of symptoms that we neurosarcoidosis. They understand about cognitive impairment and many of the types of symptoms we expierience. If I was you I would call the local MS Headquarters and ask who they would recomend.as a neuro psych eval. From the way that the speaker explained what they did, I was sure that they totally understood what we were going through and

worked to help the client with their problems that they found during their eval. Good Luck, once had a neurologist that treated me prety much the same way. I dicussed it with the counselor I was seeing to help me deal with the neurosarcoid. She told me to fire the neurologist and tell him I was firing him as my neurologist. His office staff had a fit when I very nicely and politely told them that Iwas firing Dr. Neuro, it was really funny at that point they stammered and stuttered and told me no one fires a doctor. I kindly told them that that was what I was doing, and explained the reason I was firing him. My counselor told me that I could fire him and esplained that when I hired an electrician. If I was not pleased with his work and I had explained why I was unhappy and

he made no effort to change his actions. He could hit the road. I was paying him big money and he was not providing the services that I was paying him for.. Sorry that you are gping through this. We had all had expieriences like that. Sending you a great big hug and prayers.Judy in PA.

[Guest guest]

Thanks everyone for listening, and the great suggestions,sometimes I

just have to get it out before I 'splode'!

Called USC today to start the process of getting in to see Dr. Sharma,

hopefully it will work out. Also, will call the local MS clinic as

was suggested to find the appropriate " noodle " guy rather than the

clown my DocGod wants to send me to, would have done it today but the

pain and stiffness in my hands, feet and shoulders is killing me today

so I'm going to go lay down. I don't suppose anyone has any

suggestions for a simple fix for this pain that I can't call my doc

over because of course I'm not sick, just a lazy bum.

Thanks again and God Bless you all, I feel closer to sane than I have

for a long time since I found you folks. Now all I need is a nice 6 to

8 month vacation on an island with no phone service somewhere!!!

Stu

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