My appointment with Dr Grubb

[Ernie]

Hi,

I have an appointment in May with Dr Grubb and I just don't know what to do. It is 2,000$ out of pocket and I have to travel 30 hours round trip. I went to see him 2 years ago and he helped me a great deal. He was the first doctor to believe in me. When I told him then that I had muscle weakness he told me that it was because I was deconditioned. I did not answer this comment because I was more concerned about the syncopes that the muscle weakness. I was not deconditioned when I crashed 4 years ago because I had danced 6 hours straight Saturday night and then went to visit friends on Sunday. Tuesday my life as I knew it was over.

I have an appointment with the endocrinologist in July and hope to have some testing done to help me find why I have muscle weakness and paralysis. I wonder if I should wait after July to see Dr Grubb because I could have more test results to show him. I would hate to go to him and be told to see an endocrinologist and then have to go back in 6 months to know what to do next.

I don't want to be egotistical but I am also afraid that he might have to stop working again and I won't ever be able to see him.

What to you guys think?

Ernie

[KathyP]

Hi Ernie;

It sounds like you are in between a rock and a hard place!! I can definately see your point of not wanting to see Dr. Grubb in May and then getting tests done in July by your Endo. And, $2000 out of pocket, SHEEEESH!!!!!!!!!

I would call Dr. Grubb's office and see if you can make an appointment for after July. Explain your situation to them and see if it would be better to have the new test results for Dr. Grubb to see. He might what to see the results. And, if you don't have many changes right now that you have to see him for in May then after July would be better. This way you have an appointment set up with him even if he decides not to work. If he can't see you then he should be able to recommend someone just as competant. I am sure they would understand the situation. That's alot of money to spend on an incomplete consultation.

Good luck and keep us posted! Take care!

KathyP

[calypso]

I also think you should see Grubb after the endo. Can you get on a waiting list for the endo, in case they can get you in sooner? I'd do that first.

Just wanted to remind you that I, also, have bizarre muscle weakness and wasting that is inexplicable and so far all my doctors can imagine is that I have some sort of undetectable hormone balance. I sure hope you get answers -- and that I get answers -- because it could help both of us!

Amy

[Ernie]

Thanks Katy and Amy for your opinion. I think it is wise to postpone until I see the endocrinologist so that I have a more complete file.

The "intelligent" neurologists that I saw in Montreal think that I have a channel malfunctioning which could be causing the muscle paralysis. As you know, the "stupid" one in Quebec City think that it is all in my head. So far, I am not aware if they can test channels other than in research.

I have been postponing Dr Grubb for so long and I wonder if I will every see him again. I need to have the patience to wait until I have good medical data.

Ernie

[Jenn202]

Hi Ernie - I can understand your dilema.. I think that once you get some info together going again to Dr Grubb would be a good idea.... I am sure you know that after my recent post

I think he has a great mind and might be able to offer you a perspective that was not seen by other Dr's.....

I am sorry your recent hospitalization did not go well.. I have been in that boat...Its so frustrating..... !

I hope you can get your tests done in July and see Grubb at some point afterwards.

Feel Better