These are things not normally highlighted in traditional literature about Multiple System Atrophy. This list was compiled by the MSA Coalition from the collective experience (since 1995) of hundreds of members of the MSA online support group founded by Vanderbilt University Autonomic Dysfunction Center staff. http://groups.yahoo.com/group/shydrager
Download and print a copy:
1. WATCH FOR SLEEP AND BREATHING PROBLEMS
Sleep and breathing problems are very common in MSA patients. Sleep apnea (momentary lapses in breathing), respiratory stridor (noisy breathing), REM behavior disorder (shouting and acting out dreams) and excessive daytime sleepiness can be among the earliest symptoms of MSA. Sleep apnea is very serious and can lead to sudden death during sleep. Ask your bed partner if you snore, breathe loudly in your sleep, talk in your sleep or act out your dreams. Ask to be referred to a sleep specialist for a sleep study often this can be performed in your own home. Not getting a good night’s sleep can make other MSA symptoms seem worse both for the patient and the caregiver. Sleep and breathing .
problems can be easily treated with a CPAP or Bi-Pap – this is a mask with pressurized air worn at night
2. BE AWARE OF SITUATIONS THAT CAN AFFECT BLOOD PRESSURE
Blood pressure can DROP suddenly (hypotension) in several situations: 1. After getting up in the morning – drink a large glass (12 oz or more) of plain water before getting out of bed to raise your blood pressure and take your morning medications and wait 15-20 minutes to allow them time to work before getting up. 2. During a bowel movement – use a footstool in front of the toilet to keep your legs up and your blood pressure up. 3. After a large meal – eat 5 or 6 small meals instead of larger meals. 4. After standing in one place for a long time – sit whenever possible TIP: If someone feels faint or passes out, lay them down and elevate their legs above the level of the heart. Blood Pressure can also SPIKE UPWARD (hypertension) in several situations: 1. When lying flat (supine) during sleep – raise the head of the bed 4 to 6 inches higher than the foot of the bed at night to help prevent this. TIP: If the blood pressure is too high while laying down, sitting up or standing can bring it back down quickly. Remind your doctors that they should not overreact to a high supine blood pressure.
3. PREVENT INFECTIONS
MSA patients often register a body temperature that is a degree or more below normal. Because of this a fever may not be detected. Any sudden worsening of symptoms or confusion could be a sign of infection. An even lower temperature than the normally (MSA) low temperature can also be a sign of infection. Be vigilant about preventing and detecting all types of infections urinary tract (UTI) and lung infections (PNEUMONIA) are very common. Stay well hydrated (64 oz fluid per day) to prevent urinary tract infections. Stay dry and shift weight often to prevent skin pressure sores. Swallow carefully to avoid choking and aspiration. Puree foods when swallowing becomes difficult. Get speech and swallowing therapy to avoid aspiration pneumonia. Watch for bowel blockage from chronic constipation.
4. BE CAREFUL OF SURGERY/ANESTHESIA
If an MSA patient is to have any dental work or surgery, a local anesthetic should be the preferred choice if possible. However, some local anesthetics contain adrenaline which may adversely affect blood pressure. Ensure that the dentist or surgeon and anesthesiologist know that MSA affects the autonomic nervous system. The MSA patient must be well hydrated via IV before and during surgery to maintain a safe blood pressure. Another note on surgery: Prostate surgery should only occur if the urologist and neurologist have had a consultation with each other and agree that prostate enlargement is the cause of urinary retention (since this is a common symptom of MSA which does not improve with prostate surgery).
5. BE CAREFUL WITH OVER-THE-COUNTER COLD/FLU/ALLERGY MEDICATIONS
Many of these medications contain pseudoephedrine that can affect the heart and raise blood pressure, to dangerous levels. They also may interact with prescribed medications. Be very careful and consult your doctor before mixing any medications, including over-the-counter remedies or even vitamins.
6. PREVENT FALLS
Preventing falls is very important, if you fall and break a bone you may become bedridden and more prone to infections. When it becomes appropriate use a cane, walker or wheelchair. Install grab bars in the bathroom, use a raised toilet, use a shower chair or bench, use a Hoyer lift for transfers.
7. AVOID EXTREME HEAT OR COLD
MSA can affect the body’s ability to sweat and to maintain a proper core temperature. It’s important to stay cool during hot or humid weather and stay warm during cooler weather. Also avoid very hot baths and showers.
8. EXERCISE!
It’s important to maintain strength and flexibility for as long as possible. Do range of motion exercises and any gentle exercise that can be done when sitting. Water exercises are easy to do and very helpful. Practice speech exercises along with the other exercises to help maintain strength and clarity of voice for as long as possible. Ask for physical and occupational and speech therapy as these are all known to be beneficial to MSA patients.
9. PREPARE FOR EMERGENCY ROOM VISITS
Keep a short description of your medical history, a description of MSA, and your most recent medications list handy so you can take it with you to any new doctors’ appointments, hand it over in an emergency room, give it to caregivers, etc. If you are in any of those situations, it’s much easier to have something pre-prepared, especially if you’re talking to people who have never heard of MSA.
10. BE READY TO ADVOCATE AND TO COORDINATE A TEAM OF DOCTORS
Be ready to “advocate” with your doctors, or ask a trusted friend, family member or caregiver to play this role. MSA is a complex disorder and not every doctor will have heard of it, find a doctor you trust who is willing to learn. There is literature available and there are known MSA expert neurologists who can act as consultants. At each appointment try to focus on 1 or 2 concerns to get them addressed adequately. Have a buddy with you who will make sure you are heard! Often your general practitioner can help play the coordinator role by referring you to other experts such as a neurologist, internist, cardiologist, urologist etc. If you are participating in research studies or if you are using health supplements, let all your doctors know about this.
Also, you should spend some time thinking about your “advance directives” and make it clear to your family members, caregivers and health care providers if you have made a decision about which emergency treatments you want or don’t want (such as resuscitation, intubation or feeding tubes). Remember that you can ALWAYS change your mind and change your advance directives.
For more information, please see the Multiple System Atrophy Coalition website www.MultipleSystemAtrophy.org or call the toll-free support line 1-866-737-5999
DISCLAIMER: This information is intended to aid MSA patients and their families in their discussions with clinicians. It should not be considered medical advice or endorsements of drugs or therapies. Always consult a licensed medical practitioner for expert care.
Copyright © The Multiple System Atrophy Coalition, Inc. – Originally compiled by Pam Bower December 9, 2010, Last updated February 23, 2019
That is a great primer on MSA caregiving. I would add that a record of temp and BP taken before rising in the morning and after an afternoon nap (before rising) should be kept and a brief sentence or two reporting averages and highs and lows kept for the doctors and ER in number 9 or 10.
I have been telling my doctors for years not to apply the. Normal values”to me because I don’t run that normal. I have my own set of ,ormals always been a low temperatures low blood pressure too until they put me on medication for angina then I suddenly have “normal” blood pressure. I used to walk around with b/p of 90/60 & @ night. B/p of 80/50! I told them that I was ok. I have been battling low potassium sometimes as low as 2.4 or 2.6. I don’t know if anyone else has this problem but I am lucky to get up to 3.4!
I too have always run low on my potassium and everyone freaks out but I’m fine at 2.8 but they always want to fix it.
My husband has MSA, diabetes, and kidney disease. His sugar has been in control but lately his potassium has been running high levels. I have a feeling it’s the MSA that’s effecting the levels.
Low potassium is a daily ladder to climb. Paralysis from it dropping to low over night scary as heck till you realize it’s one of the easier things to understand and manage.
A very simple and straightforward list, thank you.
My husband passed on 2/7/2019 from complications of this illness. He had first been diagnosed with Parkinson’s. There is no cure. Doctors are not very knowledgeable about MSA nor are patients who suffer from this illness. If you are diagnosed with Parkinson’s you could very well have MSA.
While it is accurate to say that many people with multiple system atrophy were first diagnosed with Parkinson’s disease, only a small percentage of those with a PD diagnosis may in fact have MSA. Some tell-tail signs include rapid progression of the disease, lack of efficacy for PD meds, and having orthostatic hypotension.
I’m afraid my husband has MSA. He was diagnosed with Parkinson’s only 5 years ago, but is having these symptoms mentioned. His CarbaDopa doesn’t seem to be doing anything, he has the orthostatic hypotension and can hardly walk, getting dizzy easily, losing his balance. Saw a new neurologist yesterday (Wed.) (we just moved back to Texas), and he did mention MSA but doesn’t want to do anything until he gets his records and until he has some tests. He’s not scheduled to go back for 6 weeks. In the meantime, am I just supposed to watch him get weaker and weaker? Surely something can be done before we go back to the doctor. I’m going to call tomorrow with my questions. I am so worried. Oh, and in June he had been getting so weak I took him to the neurologist and she immediately admitted him to the hospital. She told us 2 days later he was low on Cortisol & started him on Hydrocortizone. It seemed to make a difference, he perked up, but now he is getting weak again. Has anyone else experienced this?
Sorry to hear about your husband’s health issues. We aren’t able to give medical advice, it’s best to continue to work with his doctors to manage his symptoms. I encourage you to connect to other MSA families for support and to ask questions like this. You can join one of our facebook forums or attend a monthly online webinar. See our list of resources here: http://www.multiplesystematrophy.org/msa-resources
My husband has been getting weaker and sicker since 2015. He has seen several neurologists, but no one has diagnosed anything except peripheral neuropathy. He is frequently nauseated, and has lost 30 pounds, he has trouble walking, he is always too cold, he chokes easily, has sleep apnea, sighs uncontrollably all the time, is anxious, has orthostatic hypotension, had to get a pacemaker, and is incontinent of urine. The worst part is his terrible pain — legs, back, arms, shoulders. I have thought he might have MSA for two or more years, but he doesn’t want to hear what I think. He believes he is getting good neurological care, and won’t get another opinion. I wonder, should I try to tell him about MSA?
@Susan Winslow
That must be do frustrating. But sounds like you just can’t tell him. He won’t hear it. I guess ask yourself is it going to change anything? Please take good care of yourself too.
Yes my partner is 44 and we’ve been looking for an answer to his condition for years, after coming out of a diabetic coma and multi organ shut down. 15 years I’ve been caring for him and we attended different clinics after different clinics for mobility problems, bowel problems, heart clinics etc. In 2017 he finally had autonomic neuropathy diagnosis but still is passing out frequently on a daily basis. Constantly sick. Blood pressure 120/90 led down stood up drops to 72/54 been doing this for years. 200 mg of fludrocortisone worked okay for about a year now back with avengence. Been offered new medication to highten BP through the day but will highten his BP badly when led down. He’s going for a tilt table test and I have a bad feeling he is just about to be diagnosed with MSA.
I am so sorry for the loss of your husband. I know it’s been a difficult road.
My sister is battling this rare disease .. such a struggle as it has robbed her of her body and now mind.. seems so trapped in a body and mind that isn’t working
So sorry about your loss. You say exactly what I do . We have met one Dr. during a 5 year struggle that truly understood what we were going through. His father had PSP which is similar. My husband is in the final stage now . Very difficult.
My sister-in-law has had MSA 4 years & we believe she is end stage. Doc put her on hospice several weeks ago. She is confined to wheelchair, needs assistance for everything. Due to tremors eating very hard. she takes morphine every 2 hiurs due to brutal pain. next she will be bedridden. what should we be looking for???
I am being diagnosed with MSA and my father has been diagnosed with PSP, awful diseases
This sounds like my mom. She’s 83 and first had physical symptoms (a hand tremor) at about age 70. Dx with PD. But had lots of dizziness and fainting and became very rigid. Also developed dementia and stopped being able to communicate. She is bedridden and can hardly move. Tires from sitting up and being fed soft food. She decline but very slowly. Been on hospice for 2 years. May I ask how old your husband was when he passed and what was cause of death?
Susan, your Mom probably has PD or Lewy body dementia. Not neccessarily MSA
My sister passed as well in 2016. Same, diagnosed with Parkinson’s and she died in her sleep about 8 years later. We really don’t know what happened. Miss her terribly, God bless
Hello, sorry to hear that your husband passed away, I have a relative has just diagnosed with MSA, he is still in the hospital, could you tell me what kind of treatment the doctor gave to your husband? Is there any medicine can help? Thanks so much in advance
I have just read about a diabetes medication which may help called exendin 4 on a site called scimex.org
This is probably the article from Scimex from 2017.
https://www.scimex.org/newsfeed/expert-reaction-diabetes-drug-may-treat-fatal-brain-disease-brain
It was articles like this that led the Bordeaux team to write up an explanation about their work which we put in a blog.
https://www.multiplesystematrophy.org/blog/report-msa-coalition-funded-research-exendin-4/
My husband was diagnosed just over a year ago with MSA. I think he started with it 4 years ago.
We were hoping for a parkinsons diagnosis, as less aggressive ..
He is now unable to walk and he struggles stand without help and to feed himself due to coordination..
He has carers in 4x a day. It’s a cruel illness with no meds that are effective longterm. He’s only 60 and getting worse each day.
No one has heard of MSA and this really frustrates me
Hi Sarah,
You are welcome to join our online discussion groups. You can find links here.
https://www.multiplesystematrophy.org/msa-resources/
There is also a webinar for care partners that you can join through your computer or phone.
Online Discussion webinar – For MSA Care Partners:
Care partners of People with MSA
Meeting Time: 1st Monday of each month from 8:00pm – 9:00pm Eastern
Meeting Link: https://www2.gotomeeting.com/register/977578139
Meeting Tel: (415) 655-0060; Access Code: 950-759-636
Facilitator: Tom Tait, tom.tait@comcast.net, 856-725-3450
You are also welcome to call our support line and speak to experienced MSA caregivers. 866-737-5999
I am trying to understand it my husband had MSA or PAF, of course I pray fo PAF. He has high exposure to agent orange, and most of his joints are replaced, from aggressive osteoarthritis. The orthostatic hypotension is bad, and he does have sleep apnea. He does not slur words at all, but does get blurred vision, he has fibromyalgia, in pain all the time, so does not sleep well. Stanford, says might be pre Parkinsons, but tilt table not conclusive . This started 4-5 years ago. He does seem much more tired, and breathing is difficult.
i’m so sorry for your loss, my father suffers from msa and we’ve been told he doesn’t have much long left of survival and i just wanted to have a quick chat with you about the expectations we should have. hope this is okay and hope to hear back from you
Hi Jenny,
You are welcome to call the MSA Coalition support line and speak to experienced MSA caregivers. 866-737-5999 Leave a message with a good time to call you back.
Sorry for your loss and the struggle you have had finding understanding for his care must have been difficult. Hope you had and have the support you need.
Thanks for your comment. My husband’s been diagnosed w/Parkinson’s also. After struggling w/ low BP and several other symptoms, I’m afraid it could be MSA. I really need to talk to someone
Hi Mary,
We welcome you to call our support line toll free. Leave a message and a good time to call you back. 1-866-737-5999
Best regards,
Pam
EXCELLENT! MY BROTHER HAS MSA AND THE UTI’S AND PNEUMONIA HAVE BEEN ISSUES
Hi! My husband has MSA and would get terrible UTI’s which really aggravated the condition. Starting giving him d mannose daily. No UTI in over 3 years. Over the counter but urologist is onboard. Worth a try?
Very comprehensive
This is great information! My mother has MSA. A few weeks ago she got a UTI. It was crazy how her MSA just got dramatically worse in a few hours. After three days on antibiotics she back to baseline.
We are still having huge issues getting her blood pressure consistent. It’s just all over the place.
My dad has MSA and Northera really helps with his blood pressure.
UTI’s and ED seem to be the least-talked-about topics of this devastating disorder, although like most of the symtoms that make-up this affliction, not much can be done for you . . .
Very useful and helpful. Thanks for sharing.
My sister was first diagnosed with Parkinson but now doctor has said MSA since her disease has progressed aggressively and sinimet does not help much if at all. The only thing my sister has not had any issues with blood pressure although she has had issue of high blood pressure at times but not low I questioned doctor and he told me you do not have to have the low blood pressure to have MSA.
She is wheelchair bound in a nursing home and I believe in advanced stages. She also is have some forgetfulness issues and she becomes unresponsive like not talking much. I hate this disease, God Bless all that have it
The description of this horrific disease is excellent. My husband was diagnosed with MSA about 2 years ago and passed away 1/24/19 after declining rapidly over the prior 6 weeks. His symptoms started about 4 years ago. His Blood Pressure was a dangerous roller coaster of incredibly high and dramatic lows. His balance and coordination was poor and progressively getting worse. He was losing his ability to speak and aspirated liquids frequently. He had to be catheterized twice daily as he would never completely empty his bladder, which caused frequent UTI’s. He had been hospitalized in June with sepsis due to a UTI and aspiration pneumonia which resulted in being on life support for 2 days. I am heartbroken that he passed so suddenly, but relieved that he did not have to endure any more of the indignities of this disease. I am thankful for God’s mercy.
Doctors say it is Parkinson’s but there are many signs of MSA. Her blood pressure problems began after a stroke. 5 years later another stroke was in the pons of her brain. Caused ataxia and more blood pressure problems. Never could take Parkinson’s medicine bc of BP. Swallowing, speech and walking problems are huge problems. Now is keeping her eyes closed most of the time. Losing weight too. Is this more like MSA?
How can we know. Is DNA testing a good idea?
She wants to donate her brain for medical study. Open to suggestions.
Hi Phyllis. I want to thank you for reaching out to the Coalition’s call line as well. We were able to talk through the questions and concerns you stated above and hopefully help better understand the issues. I was so impressed you all had already decided on the idea of brain donation and were ready to discuss that. It is an important discussion topic for sure.
Keep reaching out. The MSA journey is a very difficult one and support is always there for you.
My husband’s bowels stopped working 5 months ago and he lost 37# in 4 months. He got diagnosed with MSA last week. The neurogenic bowel and bladder have him in the bathroom 100+ times a day, every day. He is living in the bathroom and cant go anywhere. Drs have not given him any meds, just OTC stool softeners, miralax and probiotics. Anyone else have this problem or have any suggestions? Colonoscopy and endoscopy normal except for twisted colon. Any help you can provide would be appreciated. Are there other online groups?
Here is our information page on neurogenic bladder: https://www.multiplesystematrophy.org/about-msa/neurogenic-bladder/ Please take this information to you neurologists and urologist. Managing symptoms is very important for quality of life. Also, please call our support hotline at 866-737-5999.
my mom has msa and for about 3 years first it was disautionmia then this she gets up well we have to help her her blood pressure drops her eyes get huge she lean hard to the right and you sit her down she has know idia whats going on sometimes her lips get cold then about three min. shell come back to you she gets real ridgid aswell please hep is this normal
Would love more info on experiences with MSA-c. We’re in the 5th year of symptoms for my husband. My journal of his symptoms in addition to gait and speech is comprehensive, and very different from MSA-p.
Hi Vicky – Here is a link to our newly updated page on MSA-C (Cerebellar ataxia). We also recommend calling our support hotline to speak with a dedicated and knowledgeable representative of the MSA Coalition. The support line number is 866-737-4999.
Hi Vicky. My wife was a confirmed MSA-Cerebellar patient and I’d be happy to share with you your notes and mine. You are right about the different symptoms as related to MSA-P, though there are many that run across both versions. Email me at lkellerman@msacoalition.org and we’ll make contact.
How long ago was he diagnosed. You say 5th year of symptoms; it wasn’t until then that my wife was even diagnosed. Glad he was diagnosed earlier and we can share what that might mean to both of you.
My dad was initially diagnosed with Parkinson’s after a TIA landed him in the ER. We were referred to a movement & disorder clinic 3 months later and he was diagnosed with MSA-C. This was back in April ‘16. He had been walking 5 ft with a fww at home, but developed aspiration pneumonia which brought him back to the ER.
He is now wheelchair bound and in a rehab facility for PT/OT/ST, awaiting d/c home.
His current symptoms include: urinary retention, dysphagia, BP issues (highs of 160/90 – lows of 60/40), garbled speech, sleep apnea with stridor, rem sleep disorder (early symptom of MSA), dehydration due to not consuming enough fluids by mouth. His diet has been downgraded to a soft, mechanical with fluids a nectar consistency.
Thanks for the tips and info. on this site. It’s been quite helpful.
My mother is barely 65 and currently resides in an assisted living complex as she needed some daily monitoring and assistance due to falls. She has gotten several UTI and they immediately affect her cognition to the point of Dementia like behavior. She has balance issues and falls almost daily. She is Incontinent and doesn’t seem to be bothered even if soaked. Zero interest in hygiene. She uses a walker but is a fall hazard standing up. She can barely finish a sentence almost mentally wandering off or unable to think of what to say. It’s very depressing, the first thing I can think of as a sign was that she just seemed to become socially awkward and not talk and started making poor financial choices. That was about 6 years ago. She has only been living at the assisted living complex for about a year and now they are saying they cant meet her needs as she continues to elevate on her needs and has been found wandering outside late. I don’t feel like there is a handle on her illness or symptoms since she receives care on base. Anyone know of a good doctor in San Antonio, Texas that takes Medicare/tricare. I wish I had the means or support to be a full time caregiver but I don’t and I don’t know what the next options are if she can’t stay where she is. Very overwhelmed navigating this. One doctor said she had MSA and it’s just sort of been assumed that’s it since.
Hi Everyone
My wife died last year from MSA-C. Conformed through a brain & spinal cord autopsy (brain donation). What helped distinguish her disease from Parkinson was that she had Striders, a breathing issue caused by the closure of the vocal cords at night.
As her urinary issues became worse she had a supra-pubic catheter put in. During the almost 18 months she had it we only had one very mild case of a UTI. In our case when a general anesthesia was called for we asked the anesthesiologist to provide pressure through the mask.
We always had an updated list of her medications and list of physicians & phone numbers on the refrigerator. The one time she was taken to the ER by EMS, I just handed them the document.
For those having trouble using a straw below is a URL for a product we found helpful.
https://www.arktherapeutic.com/arks-one-way-straws/
Thank you
Sander
Dear Sander, So sorry for your loss. Thank you for continuing to share tips with the MSA community.
My husband has MSA-C, diagnosed about a year ago. How does one go about donating their brain for research?
Here is our link for brain donation resources.
Sander,
Thanks for your comment and so sorry for your loss.
My question is, how long from the time of her diagnosis, til she passed?
I’m just learning about MSA tonight. I stumbled across this websight.
My husband has all of the symptoms and has been diagnosed with Parkinson’s Disease 2 yrs ago.
His constant low BP, lead me on this search
I think my Dad, who just turned 88 yrs. old on 7/20/19, has msa. It began about 8 years ago, with extremely low blood pressure – 70 / 40; 80 / 45; he was walking like someone with Parkinsons, the shuffle, stooping forward… but he rarely tremors, only when holding a utensil or glass, and it happens about every other day. He’s had MRI’s , and I was pushing for PD. Then, on 7/4/19, a friend of mine told me her Dad was just placed in hospice with msa. I asked her to describe it, and it sounded like my dad. I just want to make his life as good as it can be, and also the life of his wife / my mom, who tends him so well, giving him 3+ meals a day, making him drink, ensuring he takes meds, etc. I need a recommendation for a good doctor in the Bergen County, NJ area – I am willing to go into NYC to get help.Please send me any doctors you’d recommend. Also, is there a checklist of symptoms that I could use to evaluate my dad. Thank you a million!
Hi Deborah, Since you are in NJ we recommend you connect with our sister charity “MSA NJ”. They offer local support services to those in the Tri-state area. http://www.msanj.org/contact-us/
My wife, 59, was diagnosed with MSA-C and Dysautonomia in Feb. 2016. Prior to diagnosis she had severe balance issues, low blood pressure, lost the ability to write in 2015 and developed speech issues then as well. She was also diagnosed with Stidor and has a paralyzed vocal chord and narrowed airway. Upon diagnosis she has progressively gotten worse. Last year at this time she was able to use a walker and with assistance was able to get to the restroom. Now she is complete bed ridden and we are on diapers, pad and bed pan. Catheter did not work for her and superpubic not an option due to breathing issues and anesthesia. She has complete body pain constantly; one due from MSA nerve pain and secondly being restricted to the bed. we have tried to address the pain with many types of medications; the narcotics help some but slow here breathing down to dangerous levels. Her left side is completely immobile and left hand is extremely stiff and knuckles turn blue sometimes. She uses a bi-pap at night for apnea and relaxing of diaphragm. We have had minor UTI’s in the past but seem to be limited these days since we have to clean her on a daily basis. Since we are unable to get to the doctor anymore we are on hospice care with nurses coming twice a week to check vitals and use them for any required medications. We use private home care during the week since I have to work full time.
As well all know most patients are very lucid during this disease process; so she is really struggling with up and down uncontrollable emotions; crying especially, and asking ‘what is her purpose’ and ‘why can’t God Take me.’ It is difficult for me because you don’t know how to respond other than saying ‘things will be okay’; knowing full well they aren’t. She knows she is dying and can’t doing anything about it.
We have had one trip to the ER for pnuemonia Christmas of 2017 and two trips since for dehydration. She lacks the desire to eat these days with just small amounts each meal. it is difficult to keep enough fluids in her as well. Her swallowing has gotten worse as well with minor aspirations at least twice a week. Her BP ranges anywhere from 75/55 to 90/65 on a daily basis when she lies down and sometimes gets in the mid 100’s but ti fluctuates constantly.
Needless to say she has the wide spectrum of MSA symptoms. The emotional stress being the worst at this time. We have known two male friends in our little MSA group who passed in the last two years and their symptoms were very different than my wife’s.
Thank you for having this web site post. I just thought I would share the struggles my wife has with this terrible disease. God bless to all patients and caregivers.
Hi Brian, It may be helpful to ask your doctor about hospice resources to assist you with her physical and emotional care. Here is a link to more information. https://www.multiplesystematrophy.org/hospice/
I was dignosed with brainstem atrophy several months ago. What is the difference in msa.
I am Gary Jackson and this December will be 10 years since I had my first symptoms of MSA. I was first diagnosed with Primary Progressive Multiple Scleroris and several Doctors later at UAB I was diagnosed with MSA-C. I was at New Orleans several years ago and met several great patients and caregivers. Has anyone else had bouts of up and down with this disease?
My husband has been getting weaker and sicker since 2015. He has seen several neurologists, but no one has diagnosed anything except peripheral neuropathy. He is frequently nauseated, and has lost 30 pounds, he has trouble walking, he is always too cold, he chokes easily, has sleep apnea, sighs uncontrollably all the time, is anxious, has orthostatic hypotension, had to get a pacemaker, and is incontinent of urine. The worst part is his terrible pain — legs, back, arms, shoulders. I have thought he might have MSA for two or more years, but he doesn’t want to hear what I think. He believes he is getting good neurological care, and won’t get another opinion. I wonder, should I try to tell him about MSA?
My wife was diagnosed with Parkinson’s about 12 years ago. About 4 years ago they said it was MSA as she was declining much quicker than others in our support group. She can not speak, she has a feeding tube, has to be straight cathed 4 times a day. I don’t even want to say how we deal with bowel movements. She can only move her head and her arms a little bit. She is confined to bed or can sit in a chair. The only thing she can do is watch tv. Communications are very difficult. We use a board with numbers and letters on it and use her eyes closing to signal what letter she wants. Lately, that has been working so good. I work full time. A caregiver watchers her during the day. I watch her every night. I get out maybe once a week. Sometimes it costs me $100 just to go out and visit a friend. I’m not sure where we are headed and how fast. I am afraid that soon she won’t be able to respond and she will be trapped in her body and I will have to make some very difficult decisions that may tear at me the rest of my life. I am miserable now and i now I will be miserable after she dies. I wish I could see into the crystal ball to see how long we got. It costs us about $50K a year for caregiving. Not sure how many years I can cover. Life can sure be cruel.
I am only 27 years old and showing signs of MSA. It started with progressive stiffness in my right leg. Then my arms and legs started feeling foreign and weak, and my dexterity in my hands became poor. Then my facial expression flattened. Next fasciculations, postural tremor, myoclonus, and balance issues appeared. I am in month 3. No diagnosis. Someone please talk to me. I’m so scared and I need support.
Hi Rebecca,
Sorry for your health issues. MSA would be highly unlikely as a possible diagnosis in a person under 30. I hope your doctors can find the cause of your symptoms. You are welcome to call our support line 1-866-737-5999 or email us at info@multiplesystematrophy.org
I won’t go into the sadness of this. it’s too overwhelming even to type out.
Question. While “living” with MSA is there anything to do for entertainment on Holidays and birthdays? Is there anything your loved ones mention, that they have found brings the tiniest of joy. My brother in law can only sit all day long. Day after day. His wife dresses him, moves him etc. I thought maybe the drive in theater…. Sirius xm subscription…? A certain laptop for movies….? Also, is there any natural remedies or herbs anyone has found that helps with anything.
My husband was first diagnosed with Ataxia. He had scans but MSA does not always show up. The disease eventually shows itself as it develops and for him became obvious. So many doctors and care givers really have little understanding of it.
My Dad (turning 70 this July) was finally correctly diagnosed with MSA in 2018 after 3ish years of misdiagnoses. He’s in a drug trial at UCLA that seems to be helping plateau the symptoms, but we’re not seeing any “improvements”.
My Mom and I can’t seem to find any sort of road-map online to help us understand what stage of the disease he’s in, AKA what we should be looking out for/how much time he has left.
Like I said, he’s about 6ish years into the disease. He’s got all of your classic symptoms of being wheelchair bound, incontinence, difficultly speaking and swallowing, talking/fighting during REM sleep, being the human embodiment of the Leaning Tower of Pisa, anxiety and depression, loss of motor skills, and more I’m probably forgetting.
He’s recently began daily napping, which is new, and we’re not sure if that’s a new symptom or just what.
If anyone has any idea on a timeline or road-map or something that they would be willing to share just to give us a better idea as to what to expect and keep an eye out for in the upcoming months/years that would be incredibly helpful!
Hi Kylie,
We encourage you to call our support line to speak to a volunteer who can help answer your questions. 1-866-737-5999
You can also download and read our document “MSA What you need to know” https://www.multiplesystematrophy.org/about-msa
Sleep problems are common in MSA but every patient is different in how they progress. If he has never had a sleep study this might be something to ask his doctor about. There is a new article on sleep in MSA that gives some insights into the types of problems MSA patients face. https://medicalxpress.com/news/2021-04-unraveling-mysteries-disorders-multiple-atrophy.html?mc_cid=99e8b92215&mc_eid=UNIQID
Best regards,
Pam
pbower@msacoalition.org
My father was diagnosed with MSA in 2017 after 2 years of being misdiagnosed with Ataxia, MS and other neuro diseases. They have been some difficult years as he has fallen numerous times and now mostly in wheel chair due to the fact that he really cant walk with much control. He has done a clinical trial at UCLA and not much changed. the timeline we were given at UCLA was 7-8 years before we lost him completely, but I’m happy to see that many have outlasted that time frame and gives me hope that we will have him longer than expected. He continues to look for “miracle cures” but how can we stop him really, he cant come to grip that there is no official cure for this.
My wife, Miok, started having symptoms show in 2015 or so. It started with bouts of constipation and frequent urination urges. We went and saw several Urologists and GI specialists. Each tried their own treatments for those symptoms.
Her symptoms then started to slowly progress to numbness in her extremities and burning in her feet. She was diagnosed with lower back issues because of this, and the doctor recommended back surgery; however, prior to the surgery being scheduled, the doctor wanted her to see a Neurologist to rule out MS or similar disease (he was concerned about the numbness/tingling in her hands, which he felt would not have been caused by lower back issues.
This started a round of visiting several Neurologists in the Las Vegas area. We honestly felt as if the doctors were throwing darts at a board, as there was a lot of guessing going on. The last neurologist we visited in Las Vegas gave up, insisting it had to have been in my wife’s head, as nothing wrong could be found. He even suggested the symptoms may be caused by underlying depression.
During the first half of 2018, we went out of my insurance network, and went to the Mayo Clinic, just outside Phoenix. Within 7 months (about 6 visits), and about $60k out of pocket expenses, we finally had a probable diagnosis, which was MSA-P. A relief and a sledgehammer blow at the same time.
By the time we received her diagnosis, her condition had deteriorated considerably. She could no longer walk with assistance and was prone to falls, due to balance issues. She underwent the standard treatments (carbidopa-levidopa, etc.), which provided mixed results. During the period where the drugs seemed to help, we found it only slowed the progression. Once her body stopped responding to the Carbidopa-Levidopa, it was if her body would try to catch up to where it should have been, without the treatment. So, her deterioration was not linear.
Her condition continued to worsen. It eventually robber her of:
-Her ability to speak
-Her ability to feed or take care of herself
-Her mobility
-Her life
The final few weeks of her life was tortuous. I felt as if she was a prisoner in her own body. Simple communications with her became extremely difficult (we used flash cards, written notes, etc.). For the last 2 weeks, communication was impossible. She slipped into an unconscious state the final 5 days and passed away on April 1st, 2021.
MSA-P is a horrible disease that I would not with on anyone. Not only does the patient suffer, but the family/friends that have to endure watching their loved one slowly die, also suffer.
So sorry for your loss