Saturday, March 6, 2010

From a concerned caregiver

I had a most amazing conversation with a man who took time to help me as his wife was dying of MSA. His concern that I get evaluated at the Mayo Clinic in Jacksonville is obvious from his message. He could not save his wife but he hoped to help prolong the life and ease the suffering of another woman who has the same name as his wife. I hope you find this as uplifting as I do. The exchange still brings tears to my eyes.

On Thu, Mar 4, 2010 at 2:24 PM

Dear Mary
My wife has MSA, and we simply for a number of years believed she only had orthostatic hypotension, together with symptoms of post prandial hypotension, since she often fainted and fell after eating. Later other symptoms became evident, and she had a bad fall in October of 2008, after which her level of energy decreased, together with walking problems, drooling at the mouth etc. MSA, as the name implies ( multiple system atrophy ) displays itself in many ways which can be different with each person.

I would recommend that you go to the Mayo Clinic near Tampa, and ask to be seen by Dr. Low. He has done some excellent work in studying MSA and I believe that he would be able to help you understand your illness, if it is indeed MSA.

Date: Friday, March 5, 2010, 2:51 PM

Thank you for the advice. There is no Mayo clinic in Tampa. I went to USF College of Medicine Neurology Dept. and saw an inept neuro. Had already been to another one prior to them. Finally found someone who knew about movement disorders and specializes in MSA, etc. I am friends with the former Chair of the Dept of Neuro at the Neurology Dept and spoke with him about the doctor and resident I had seen there. Gave him my symptoms, my MRIs, etc. and he was furious and the next week went in and held a special conference for all the neuros about MSA and movement disorders. I trust my neuro knows what she is talking about and all my symptoms are following a typical course for this atypical disease. My face has recently started showing the "mask" and I have an almost permanent straight look from my mouth, smiling is very difficult and I am someone who has always smiled and laughed, now have "frown" lines instead of laugh lines. Had there been a Mayo Clinic in driving distance for me, I would have gone. My case is just complicated by my kidney disease, RA, Sjongrens, and a few other misc. problems. Mary (Mershanti) in Tampa

On Fri, Mar 5, 2010 at 3:49 PM

Mary: it is in Florida, maybe Jacksonville. Look it up on the internet. My wife is dying, so I can't help you further just now.

Date: Friday, March 5, 2010, 4:33 PM

I am so sorry about your wife. Yes, there is one in Jacksonville, but that is a 4-5 hour trip from Tampa. Please accept my deepest condolences on your wife's condition. This is a horrible disease. Mary (Mershanti) in Tampa
On Fri, Mar 5, 2010 at 8:13 PM
Mary: since my last email, my wife died at 5 pm. Thank you for your message of condolence. May I suggest that you phone the Mayo Clinic in Jacksonville, and see if you can speak with Dr. Low. He can give you the latest on treatment of MSA, actually on rats with success( rifampicin, resagiline ), and perhaps make a trip of five hours from Tampa to Jacksonville worthwhile. Good luck.

On Fri, Mar 5, 2010 at 8:30 PM
Oh, I am so sorry. Being the one with the disease, I have to feel she is free now - free from pain and this illness. I am certain you were a caring and supportive caregiver to her. My heart goes out to you. I will discuss with my PCP and my husband about the Mayo trip. I am scheduled on regular other doc visits and freeing up the time is difficult - but I will certainly give your suggestion serious thought. Thank you for caring enough to get in touch with me at this most difficult time for you. Mary (Mershanti) in Tampa

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