You each posted in the past about Parkinson's along with MSA that affected either you or a family member. How are you all doing? Have you found any therapies or treatments that have been helpful?
@mzpattilyn I was just thinking about you and wondering how you doing with your vision problem. Any improvements since you last posted?
How are your hand tremors, @gwgrover. Are they still bothersome or have you found meds or a treatment that have helped?
I have been diagnosed MSA-C some time ago. It started with low blood pressure while standing. Now, after many tests, it turns out to be this. I got worse quickly having bad balance (i can hardly walk anymore) very low blood pressure, difficult focussing with my eyes. (I wear glasses with prisms) and difficulties speaking. If that’s not enough. I have tremors in both hands. I take meds for my blood pressure (doesn’t seem to work) tremors ((a bit better ) but that’s all. I keep hoping for some miracle and stay optimist. Oh, i live in Europe. I’m happy to have found this group!
My husband has this disease. He was diagnosed with MSA-C in Sept 2018. He showed signs of something being wrong about 21/2 to 3 years before the diagnose.
He started having a problem with his speech. Was having a hard time forming words. We 1st went to his GP who sent us to a nuero dr.. He was no help at all. We went back to the GP and was then sent to neurologist in Rochester NY who specializes in movement disorders. After seeing Dr. Barbanno for 1 1/2 years and another MRI it was conclude that my Husband has MSA-C. The "hot cross buns" showed on the MRI. Lou, my husband, did not respond well to PD meds and was getting worse FAST.
He does not have any tremors. His symptoms are problems walking, gait, swallowing, eyesight, muscle coordination, urinary mishaps, REM sleep disorder. The latest to add to this list is acid reflux in the middle of the night. He sleeps with the head of the bed up but there are time when I have to change the bedding the next morning.
Things that help are physical therapy and speech therapy. In short EXCERSICE. We have made changes to somethings like drinking from water bottles so if he drops it or it gets knocked over spills are small. Hard chairs in the dinning room and by the bedside, shower stall put in the 1/2 bath, chair lifts, railing for stairs, etc. Yes this list will get longer as the disease progresses.
I would like to extend my sincere sympathy to anyone who has this disease. There is no cure yet.
If anyone would like anymore information on my experience with Lou please let me know. So little is known about MSA and it is so hard to find any support groups because of its rarity.
May I ask how old your husband is, and age of his diagnosis? My husband is 41, and just got diagnosed with msa. All new to us and pretty shocking to say the least. He was recently started on PD medication which is helping his symptoms. I noticed there were neurological changes last spring with his speech and gait. Started testing in October and just got the diagnosis confirmed via skin biopsy last month. Have an appointment at mayo in March. Just looking for others going through the same thing to hopefully get an idea of what to expect of the disease and visit to mayo. Thanks in advance!
May I ask how old your husband is, and age of his diagnosis? My husband is 41, and just got diagnosed with msa. All new to us and pretty shocking to say the least. He was recently started on PD medication which is helping his symptoms. I noticed there were neurological changes last spring with his speech and gait. Started testing in October and just got the diagnosis confirmed via skin biopsy last month. Have an appointment at mayo in March. Just looking for others going through the same thing to hopefully get an idea of what to expect of the disease and visit to mayo. Thanks in advance!
Hi, @franklin924 - welcome to Mayo Clinic Connect. Glad to hear you got a diagnosis and some clarity for your husband after the symptoms started coming up. Your husband is fortunate to have you looking out for him.
What Parkinson's medication is he taking? Sounds like perhaps it's helping his speech and gait? Have you noticed any side effects so far?
Hi, @franklin924 - welcome to Mayo Clinic Connect. Glad to hear you got a diagnosis and some clarity for your husband after the symptoms started coming up. Your husband is fortunate to have you looking out for him.
What Parkinson's medication is he taking? Sounds like perhaps it's helping his speech and gait? Have you noticed any side effects so far?
Thanks for responding. He is on carpidopa levadopa three times a day and it has helped his symptoms so far. We were told the medication will usually help and then will eventually stop working. Could be 6 weeks, could be 3 years. We are looking forward to coming to mayo next month to get a better idea of his diagnosis.
I have been diagnosed MSA-C some time ago. It started with low blood pressure while standing. Now, after many tests, it turns out to be this. I got worse quickly having bad balance (i can hardly walk anymore) very low blood pressure, difficult focussing with my eyes. (I wear glasses with prisms) and difficulties speaking. If that’s not enough. I have tremors in both hands. I take meds for my blood pressure (doesn’t seem to work) tremors ((a bit better ) but that’s all. I keep hoping for some miracle and stay optimist. Oh, i live in Europe. I’m happy to have found this group!
@karinneke6 - how have you been doing this week? I'm sorry to hear the blood pressure meds are not seeming to work and your tremors are just a bit better.
If you don't mind sharing, what medications does your doctor have you taking presently? Have you mentioned to your doctor the medications are not seeming to be effective?
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Hello @pammettee @pcolunio @hoard
You each posted in the past about Parkinson's along with MSA that affected either you or a family member. How are you all doing? Have you found any therapies or treatments that have been helpful?
@mzpattilyn I was just thinking about you and wondering how you doing with your vision problem. Any improvements since you last posted?
How are your hand tremors, @gwgrover. Are they still bothersome or have you found meds or a treatment that have helped?
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2 ReactionsI have been diagnosed MSA-C some time ago. It started with low blood pressure while standing. Now, after many tests, it turns out to be this. I got worse quickly having bad balance (i can hardly walk anymore) very low blood pressure, difficult focussing with my eyes. (I wear glasses with prisms) and difficulties speaking. If that’s not enough. I have tremors in both hands. I take meds for my blood pressure (doesn’t seem to work) tremors ((a bit better ) but that’s all. I keep hoping for some miracle and stay optimist. Oh, i live in Europe. I’m happy to have found this group!
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Like -
Helpful -
Hug
5 ReactionsMay I ask how old your husband is, and age of his diagnosis? My husband is 41, and just got diagnosed with msa. All new to us and pretty shocking to say the least. He was recently started on PD medication which is helping his symptoms. I noticed there were neurological changes last spring with his speech and gait. Started testing in October and just got the diagnosis confirmed via skin biopsy last month. Have an appointment at mayo in March. Just looking for others going through the same thing to hopefully get an idea of what to expect of the disease and visit to mayo. Thanks in advance!
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Like -
Helpful -
Hug
4 ReactionsHi, @franklin924 - welcome to Mayo Clinic Connect. Glad to hear you got a diagnosis and some clarity for your husband after the symptoms started coming up. Your husband is fortunate to have you looking out for him.
What Parkinson's medication is he taking? Sounds like perhaps it's helping his speech and gait? Have you noticed any side effects so far?
Thanks for responding. He is on carpidopa levadopa three times a day and it has helped his symptoms so far. We were told the medication will usually help and then will eventually stop working. Could be 6 weeks, could be 3 years. We are looking forward to coming to mayo next month to get a better idea of his diagnosis.
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Like -
Helpful -
Hug
1 Reaction@karinneke6 - how have you been doing this week? I'm sorry to hear the blood pressure meds are not seeming to work and your tremors are just a bit better.
If you don't mind sharing, what medications does your doctor have you taking presently? Have you mentioned to your doctor the medications are not seeming to be effective?