Made a decision
 

I decided I am going to see the local neuro Dr Risk. He has no history with me and no access to the university records that have affected and still affect any outcome there other than my wonderful pulmo-breathing doc.

I will probably have to change my family doc because he flat out said he wouldnt refer me to this neuro. This neuro is the one I mentioned who is in a lone practice not with the other neuros in town. He is kinda unique. He is the only doc in the area who would treat someone with chronic fatigue and take it seriously.

The up side of this is that I think I can get a lot better quality of life if I can just get a neuro that will care! One that will work on my mestinon and give me something for the diareah so I can take lareger doses. That will help vision and swallow. My life will become about living and not about constant appointments to get the university to believe I have MG. I dont deserve that.

Also I have no doubt he will prescibe the injectable mestinon to get me thru the mouth and eye surgery that HAS to be done. My neuro wont help me with even that. I have never met a doctor so cold and detached. It took them a number of years to find a neuro to come there and work. I wonder why. And this is the person they got!

I remembered this morning that my breathing doc when he did the pulmonary exercise test in Feb 08 and determined that what I was experincing was NOT fatigue like one would see in chronic fatigue. It was my muscles or heart and my heart had been thoroughly and repeatedl tested. So not heart. He said I needed a GOOD neuro muscle doc and there was not one at the university. The only addition since that time to the univeristy is the neuro I have now. She wont agree to do any tests he suggests except the muslce biopsy. AS my daughter said to do that just to prove I dont have it would be cruel. And to do it and not do other less invasive tests is cruel. She hates this neuro.

Annie59

"He is the only doc in the area who would treat someone with chronic fatigue and take it seriously".

if this is so, it is definitely the doctor you want to see. he sounds like someone that treats people not diseases.

Annie, that's a great decision. You'll find that the neuros in private practice don't "play ball" with the other neuro gangs and so they tend not to like them. Seriously, the culture of coverup in the neuro community is really odd and dysfunctional. Because if this guy determines that you are really bad off, then the other neuros have not done right by you and would be open to legal action. Not that you intend that!!! Most of us patients simply want help but that's how some doctors think. Really backwards.

I hope you will get help and soon.

Annie

Annie, that sounds great. You go!

Abby

Yes this decision is feeling good. Going the route my daughter suggested to basically try to 'force' my neuro to diagnosis by making myself alot worse would have been terribly dangerous.

She doesnt have as much experience with how callous doctors can be. It still surprises her when she we get that. If it happened I could end up in bad bad trouble and with deeply cold neuro who will just stand there or not even show up.

I didnt tell you I think that I still have not been scheduled for any appointments for my eyes at the university. Now this is huge because the eye clinic here (where my surgeon is) documented that my myositis is back and I still have eyes that arent moving right and I am unable to drive. My daughter said we wanted to go to the university again so they called down there to make the appointments. Rather than make the appointments they told them 'they had to review my case first'. I could tell they thought this was odd. That was a month ago and the university STILL has not made even at least the neuro-optho appointment for the myositis!! Now to me that is malpractice. Good grief I have an infection in the muscles around both eyes now and they are gonna wait!? For what?! Fortunately I have options for the movement issue which I wanted anyway because I know they are biased. But the infection I hope will resolve with the tanning. It did during the summer. Tho this is worse this time.

Annie59

Wait a minute . . . you have an infection around your eye area and you have not gone in yet? That requires immediate care, from either the ER or an urgent care center. Or if you can get into a primary doctor tomorrow. Do not wait. Infections like that near the eye can cause permanent damage to your sight and can spread to the brain.

Annie, quit waiting around for people to help you and go get some help now.

Great decision! Have you meet with him yet? Let me know how it goes.

Annie, Yes, you do need to get help right away if you have an infection. Are you sure you don't just have inflammation? I believe myositis is an inflammatory condition, not infectious. Of course, you could have an infection in addition to the myositis. I'm no doctor (obviously), but if you are in a lot of pain and especially if you have a fever you need to be seen now!!

I agree that forcing a diagnosis is the wrong way to go. Not only could you kill yourself in the process, but chances are the doctor wont change his mind anyway.

Good luck with everything.

Yes I was referring to the myositis in my face that does involve now both eye areas and more of face not just the left as was July. When they rushed me thru the July appmts in Neuro-optho in July I realized after that taking the pescribed high dose Naproxen wouldnt work with the already stomach issues was struggling with the my mestinon. I called back to discuss this and ask for what else I could take and got first the optho tech who was very snotty and disrespectful. I told her I wanted to speak to Dr C the senoir doc. The male intern that was part of the case called me back not the senior doc. He also was snotty arguing I couldnt have pain in jaw too that it must be my teeth. I asked if he would tell the neuro dept that I should wait till this is better before the muscle biopsy. AT that he screetched at me "well then just forget it!!"

I knew my vit D was low and so I started doing all I could to get vit D up as I never heal well and get more infections when it is in the 30s or lower. It worked. But tanning from the sun for only gets me barely if lucky up to 40. My body just has trouble processing D. I so so miss being up in the 60s. I miss that level of health, of what that does to me. It feels so wonderful. Sorry for the tangent here.

AS of today it is obvious I am healing. The big myositis headache is gone pain is down that I was waking up with thru the area of left eye. And I even had itching in my eyelids tonight indicating I had a good case of blepharitis with this. Last week I made arrangements to have the aid agency come 2 times. The regular time on Tuesday and again Friday to just take me to tan. That would be 2 times as they were already taking me on Tuesday. So in the week last week I had tanned 3 times. That is when things really change for me. Tanning 3 times in a week. I talked to my pcp about something other than naproxen and he suggeseted Celebrex. At first he was unclear how to get my insurance to approve so I had to just focus on the tanning. When I looked up the Celebrex at one point I discovered the warnings on bone damage from it. Now I already have bone damage my vit D and secondary hyperparathyroid going on for so long. I had hope an antibiotic would work but really just wanted the tanning drug free way.

Annie59

http://www.ncbi.nlm.nih.gov/pubmed/11950012

http://www.sjogrensworld.org/mandel.htm

Annie, I'm going to say it again. Considering that you have myositis, perhaps you should see a rheumatologist. One in private practice. There may be more going on here than you know of.

Annie