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?
Looking for advice and someone going through the same thing. My 41 y/o husband was just diagnosed with MSA following skin biopsies last month. The neurologist we are seeing has never had a patient this young diagnosed with MSA so we are going to Mayo next month for further testing and medical opinions of what to do next. His first symptoms were change in his gait, stiffness, tremor and weakness to his left arm/hand. He has recently been started on medication which does seem to make him feel better for the time being. I would just like to hear from others going through this so we have some idea of what we may expect in the next few years.
Looking for advice and someone going through the same thing. My 41 y/o husband was just diagnosed with MSA following skin biopsies last month. The neurologist we are seeing has never had a patient this young diagnosed with MSA so we are going to Mayo next month for further testing and medical opinions of what to do next. His first symptoms were change in his gait, stiffness, tremor and weakness to his left arm/hand. He has recently been started on medication which does seem to make him feel better for the time being. I would just like to hear from others going through this so we have some idea of what we may expect in the next few years.
I'm pleased to hear that your husband has an appointment at Mayo Clinic for further testing and to form a treatment plan. At age 41, you want the best treatment plan possible.
You mentioned that he was diagnosed with skin biopsies. Is that a new method of diagnosis of this disorder?
I look forward to hearing from you with any other questions or concerns. Will you post again and let me know if the Mayo appointment provides you with some helpful information?
@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?
Since feb 17 i got worse. Can hardly stand without 2 people to suppport me. Tremors got worse but i can contol them with meds (prolopa and rivotril). A nurse comes in at evening to put me in bed. I take fludrocortissone (3) for my bloodpressure but. I have orthostatic pressure which means my blood pressure drops when i stand up. A few weeks ago it dropped very low and i lost conscience. I suffer also from double vision, so we bought prisms thanks for your concern!!
Since feb 17 i got worse. Can hardly stand without 2 people to suppport me. Tremors got worse but i can contol them with meds (prolopa and rivotril). A nurse comes in at evening to put me in bed. I take fludrocortissone (3) for my bloodpressure but. I have orthostatic pressure which means my blood pressure drops when i stand up. A few weeks ago it dropped very low and i lost conscience. I suffer also from double vision, so we bought prisms thanks for your concern!!
Are you confident in your MSA-C Dx? I think I recall that it was uncertain at one point. I’m so sorry you are having these problems and seem to be on your own for the most part. This has to be one of the cruelest diseases known to man (including ALS, Park + and prion diseases). I always thought it was cancer, but at least with cancer there is hope that you can beat it. I will be praying for you and wouldn’t it be the best if somehow it isn’t MSA. Take care.
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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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3 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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Helpful -
Hug
7 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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Helpful -
Hug
6 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?
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Like -
Helpful -
Hug
1 ReactionThanks 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.
-
Like -
Helpful -
Hug
2 Reactions@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?
-
Like -
Helpful -
Hug
2 ReactionsLooking for advice and someone going through the same thing. My 41 y/o husband was just diagnosed with MSA following skin biopsies last month. The neurologist we are seeing has never had a patient this young diagnosed with MSA so we are going to Mayo next month for further testing and medical opinions of what to do next. His first symptoms were change in his gait, stiffness, tremor and weakness to his left arm/hand. He has recently been started on medication which does seem to make him feel better for the time being. I would just like to hear from others going through this so we have some idea of what we may expect in the next few years.
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Helpful -
Hug
5 ReactionsHello @franklin924
I'm pleased to hear that your husband has an appointment at Mayo Clinic for further testing and to form a treatment plan. At age 41, you want the best treatment plan possible.
You mentioned that he was diagnosed with skin biopsies. Is that a new method of diagnosis of this disorder?
I look forward to hearing from you with any other questions or concerns. Will you post again and let me know if the Mayo appointment provides you with some helpful information?
-
Like -
Helpful -
Hug
1 ReactionSince feb 17 i got worse. Can hardly stand without 2 people to suppport me. Tremors got worse but i can contol them with meds (prolopa and rivotril). A nurse comes in at evening to put me in bed. I take fludrocortissone (3) for my bloodpressure but. I have orthostatic pressure which means my blood pressure drops when i stand up. A few weeks ago it dropped very low and i lost conscience. I suffer also from double vision, so we bought prisms thanks for your concern!!
-
Like -
Helpful -
Hug
5 ReactionsAre you confident in your MSA-C Dx? I think I recall that it was uncertain at one point. I’m so sorry you are having these problems and seem to be on your own for the most part. This has to be one of the cruelest diseases known to man (including ALS, Park + and prion diseases). I always thought it was cancer, but at least with cancer there is hope that you can beat it. I will be praying for you and wouldn’t it be the best if somehow it isn’t MSA. Take care.
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Like -
Helpful -
Hug
3 Reactions