sdsyd
Distinguished member
- Joined
- May 22, 2008
- Messages
- 329
- Country
- US
- State
- sd
- City
- piedmont
Hi everybody! Just wanted to update again and get any thoughts anyone has. This might be long so I apologize in advance.
I dont know if updated since my spinal tap, but there were no antibodies for CIPD, so the neuros felt they werent ready to "hang their head on a diagnosis" OR begin IVIG which apparently has the potential to speed progression of other things.
I had my followup visit with my local neuro last week. He has stated that it is definately progressing, with clonus in ankles which was not there before, also with the slowness in my walking, balance issues and weakness. He does not see "much atrophy". He tested me for stiff person syndrome ( results not in yet) and asked me to call my gp and have some lab work done to rule out other underlying conditions that rarely mask as neuromuscular diseases, specifically certain cancers. He also wants me to go BACK to Colorado in June or July to the ALS?MDA clinc and says the only thing he is convinced of is what I have is rare. He AGAIN brought up ALS, but since its been over a year since symptom onset thiks I would be completely incapacatated by now. He asked if I thought my muscles were"shrinking" and I said yes- I wear different sized EVERYTHING now, even shoes. But I have not had much weight loss. Thats because I have been forcing myself to eat, eat,eat in hopes that it will "ward" off other problems.
I have been taking 2.5 mg valium twice a day and 5 mg at bed to help with cramping. He gave me a new script and told me to take 5 mg 3 times a day and then in ten days to take 7.5 three times a day. The cramping and weakness in wrists are bad especially with prolonged activity and I now drive with my wrists, forearms much of the time.
I told him I applied for disability and was denied and he said to go ahead and appeal. I need to quit my job ( am still working 3 days a week about 2 and a half hours a day) but its becomming dangerous for me and my patients. Sorry, I am not trying to be a complainer and have managed to keep a postive attitude through all of this. I just feel so damn guilty that my hubby has to work overtime and then do extra around here, and now I'll be losing what little I WAS making and really honestly felt I was contributing.
I am running on empty here guys. I am not depressed but very frustrated with this whole thing. I am still actively involved in any way shape or form with friends, family and still serving on the Park Board, but am at my wits end with the medical part of me.
Thanks for reading and caring.
Love,
Cindy
I dont know if updated since my spinal tap, but there were no antibodies for CIPD, so the neuros felt they werent ready to "hang their head on a diagnosis" OR begin IVIG which apparently has the potential to speed progression of other things.
I had my followup visit with my local neuro last week. He has stated that it is definately progressing, with clonus in ankles which was not there before, also with the slowness in my walking, balance issues and weakness. He does not see "much atrophy". He tested me for stiff person syndrome ( results not in yet) and asked me to call my gp and have some lab work done to rule out other underlying conditions that rarely mask as neuromuscular diseases, specifically certain cancers. He also wants me to go BACK to Colorado in June or July to the ALS?MDA clinc and says the only thing he is convinced of is what I have is rare. He AGAIN brought up ALS, but since its been over a year since symptom onset thiks I would be completely incapacatated by now. He asked if I thought my muscles were"shrinking" and I said yes- I wear different sized EVERYTHING now, even shoes. But I have not had much weight loss. Thats because I have been forcing myself to eat, eat,eat in hopes that it will "ward" off other problems.
I have been taking 2.5 mg valium twice a day and 5 mg at bed to help with cramping. He gave me a new script and told me to take 5 mg 3 times a day and then in ten days to take 7.5 three times a day. The cramping and weakness in wrists are bad especially with prolonged activity and I now drive with my wrists, forearms much of the time.
I told him I applied for disability and was denied and he said to go ahead and appeal. I need to quit my job ( am still working 3 days a week about 2 and a half hours a day) but its becomming dangerous for me and my patients. Sorry, I am not trying to be a complainer and have managed to keep a postive attitude through all of this. I just feel so damn guilty that my hubby has to work overtime and then do extra around here, and now I'll be losing what little I WAS making and really honestly felt I was contributing.
I am running on empty here guys. I am not depressed but very frustrated with this whole thing. I am still actively involved in any way shape or form with friends, family and still serving on the Park Board, but am at my wits end with the medical part of me.
Thanks for reading and caring.
Love,
Cindy