So close yet so far away

Sammantha · 06-12-2009, 02:16 PM

Went to my appointments.. The resident and doctor saw me. They were not concerned about my thymoma or cat scan print out, he wanted the actual CD so i have to mail it to him. He then checked my muscle strength and what not. He sat down and told me that my symptoms were atypical for Myasthenia Gravis, he then scheduled me an appointment with his physical therapist before my EMG the next day. The therapist was great! I stopped complaining or even talking about the stiffness i have in my joints and what not, she picked up right away that my ankles were really stiff. I asked if that is why they shake so bad when i put any pressure on them, she said that was clonus. The left ankle just flops to the side with any pressure, and she said that i will need a brace soon for that ankle, but right now they are too stiff. I swim for excersize and she gave me some techniques to stretch out my ankle and hip. The doctor asked me how long i had that shaking in my ankle after he did my EMG. The EMG hurt because they had to do my eye muscles! At the end he said that i did have weakness in my deltoid and wrist and that he does not know why i have the clonus. He said that he does not think i have MG but cant say 100% because the bloodwork had not come back yet. He then said he did not know why my breathing had decreased and that my thoracic spinal muscles were good. So he is going to review all my old tests with my new ones and come up with a plan of action. Dr. H was a very pleasant man and he did the EMG himself even walked me to the room, he made me feel like i was being taken care of almost.

So close yet so far away, from a diagnosis......................Sammantha

BethU · 06-12-2009, 04:11 PM

Sam ... it sounds like you are finally hooked up with people who are going to get to the bottom of this. Your doctor sounds wonderful.

Hope, hope, hope you get the answers soon!

hopingforcure · 06-12-2009, 04:49 PM

Sam,
Oh goodness darling, and EMG on your eyes? did not even know that was an option.. But muscles are muscles I guess.. Sound's like you are hopefully at least on the track of help??? Sounds like your emg was clean for the most part? when will you find out more info? I was thinking about you all week, hoping things went well.
I have severe clonus, it is a real bummer. Did you have brisk jaw jerk?
We know you had brisk reflexes(ie the clonus), did he find anything else?
Hope you are getting close to an answer.

/

crystalkk · 06-12-2009, 06:38 PM

Sam,

It sounds like you found a doctor you feel comfortable with...Did you have a regular emg and a single fiber emg?

GlenBrittle · 06-12-2009, 07:03 PM

Quote:

Originally Posted by Sammantha

The EMG hurt because they had to do my eye muscles!

OMG ,,, that hurt just to read it. Hope you feel better.

The good news is that you have not been diagnosed with ALS. Yes , it sucks not knowing.

Glen

rose · 06-12-2009, 08:06 PM

Sam,

I am so glad you got to someone who will listen. That is more than half the battle. Did he give you any sort of time frame as to when you could expect to hear back from him?

I know it may not seem like it to you, but you really are getting more answers lately, even though they're scattered all over the place!

I agree that your doctor sounds wonderful, and you certainly deserve it. Let us know.....

Sammantha · 06-12-2009, 08:44 PM

Thanks everyone, it was only the single fiber EMG and he did my elbow area and my shoulder. He also did my rib, back, temple area and right under my eye. He said that the EMG did confirm the weakness in the wrist and shoulder muscles... I was happy to hear that my back was okay. I still get stiff and have pain it but it is due to weak ankles i think, you know how the feet and ankles affect everything!! My poor husband does not have muscle issues but is on his feet so much he gets terrible back pain. The doctor is waiting on my CD and he asked me if i had a follow up with my doc and i said no. Thats when he went into about how he has to go through a lot of old tests and that the EMG has over 2 and half hours worth or readings to interpret! I said that's all? Just being funny.. So i will wait for awhile, then see if i need to call. I have a feeling they will contact me... Thanks for all the support!