I need opinions. My husband has MSA-C, his sister is a chiropractor. She has started John on multiple supplements, so much in fact, that I feel overwhelmed when she mails him yet, another box of different supplements to add. Brain health, gut health, vitamin A,C,D you name it she has him on it, and adding more and more. In addition to the medication his doctors have him on, I just find it so overwhelming. Now she has decided that she is coming to stay with us for two weeks so she can "bring her devices" with her and treat him, show him what to eat and how to cook. (this is my training with her as well, cooking). I am ok with learning to eat more healthy, but when do I step up and say "just stop with all this!". Now she has decided that my cat (who I have had from a kitten, he is now 14) is what has contributed to this disease, and that I should get rid of the cat, the carpet, everything that has "cat" on it. It has caused a huge argument, as I don't believe the cat has anything to do with this disease. I lost both my brothers within 2 months of each other, to alcohol, and I still grieve their loss (this was 2 years ago). I'm loosing my husband, and now I need to loose another thing I love? I know it's just a cat, but it's my cat and I love him. My husband says, "but if it help me get better, why wouldn't you get rid of it". I agree, but....it's not the cat! Does anyone out there know of any studies that show a cat has anything to do with this disease?
Needing opinions or facts with MSA-C - Multiple System A...
Needing opinions or facts with MSA-C
Hi Andrashko
I'm going to try and tread lightly with this as I'm aware myself of the detrimental impact family who 'want to help' can have on the situation.
I don't think vitamins as such will have any negative impact on your husband however I dont believe they are going to cure this condition from the conversations I've had with my husbands GP and consultant. If they did then possibly things would have been recommended. I give my husband omega and turmeric and we slowed down on everything else because he didn't feel any benefit from them and they cost a great deal. We do however follow a low fat diet and eat fresh fruit and vegetables, bran, oats and wholemeal bread to maintain a healthy diet and gain vitamins from this too, as well as plenty of water.
Others out there may know more about articles relating to cats and their impact however I haven't personally read anything that's ever related this neurological condition to a cat? We have a rescue cat and no intention of ever getting rid of him. Unless there's some concrete evidence out there which I would ask your sister in law to provide my advice would be to not remove your cat from your home who you clearly love. Ours like yours is a source of joy as well as companionship for both of us.
This is also about your mental health and like me I feel your mental health would be significantly impacted from what you've said if you had to give him up.
Without hard evidence I would not rehome him Andrashko.
I hope I haven't been too heavy handed with my opinion and I'm sure your sister in law is just trying to find ways of helping her brother, however I don't feel this drastic decision will actually make any difference to your husbands condition.
I'm sure others may have more insight than me, so see what the advice is that comes back.
I wish you well and hope you have the courage to stand your ground.
Xx
Thank you so much for your reply. I told my husband I am all for his sister coming out and trying to help, but I don't have a lot of confidence in it, but it's worth a try right? The problem from the start is his sister 'doesn't believe' he has MSA-C, and for whatever reason she believes she can cure him. She repeatedly says that the doctors don't know what they are talking about, they are just throwing things at him. I have to keep my mouth shut, because I firmly believe in our doctors. Even showing her a picture of the MRI where it shows the "hot cross buns", that we were told is confirmation of this disease. Her reply was, "that doesn't mean anything". I think my cat and I will be spending alot of time together while she is here. 
Hi Andrashko
I think FredaE has given you sound advice and clearly has great information ref chiropractors which I'm glad she's shared.
I'm really glad you're going to stand your ground. I fully sympathise with your situation because my husbands family don't believe he has MSA despite scans, evidence and symptoms. They believe he's been 'poisoned' so won't entertain the consultants and subsequently offer no support or not great advice.
This is your journey so please be strong and act on what you feel is right for you and your husband, not others' opinions who are not on this journey.
Look after yourself and look after your lovely cat while your sister in law is visiting.
Xx
Thank you for your kind words. I'm so glad I found this group. I really do feel I'm fighting this journey for my husband alone. It helps to know I am not really alone, and others out there have experienced the same, as sad as it is.
Unfortunately you aren't alone. Whilst all the people on this forum wished their diagnosis of msa was wrong. It is a condition thats real. Your sister in law unfortunately is in denial. Enjoy her visit, let her look after her brother and you catch up with some you time. Xx
I think your sister in law is suffering and feels out of control of the situation. She is trying to find some control in a situation that is beyond anyone’s control. She obviously means well and maybe with time she will get her head around the situation. It’s hard for everyone and some react one way others another. You could take the opportunity while she is staying with you to talk about how you both feel but if that is too hard for you to to cope with right now you could just begin explaining how you feel about your husband diagnosis and see if she will open up. If even that is too much at the moment let her try to help in what is probably the only way she can see to help and talking may happen naturally. I hope you don’t feel I’ve overstepped here this is the first time I’ve been on this site. I hope things go well for you x
I am a great supporter of Chiropractic. My late husband was chairman of the National supporters group bt I have to tell you that there is more than one type of Chiropractor. There is a group accepted by the NHS who deal with manual adjustments to the skeleton especially the back and neck.They are trained with a 3 year university cours.e I am out of date now but the main UK one was at Portsmouth University
There are other groups which have all sorts of add ons like supplements .I am not going to make any comments about the training or validity of these but I suggest that you contact the British Chiropractic Association to get as much information as you need about the subject.
The time to put your foot down on unwanted help is NOW. How you do it without causing family rifts I dont know but at the very least you need to make sure that your sister in law is well informed about MSA which forms no part of a chiropractors training. From the suggestions she is making it sounds as if she has failed to grasp that MSA is not a failure of function where arms need help to get their muscles back into shape but a failure of control because of destruction of brain tissue.
I suggest you contact the MSA nurse specialist for your area and ask her to talk to your sister in law as she would to your GP. who will also not have met MSA The sort of help which is being tipped all over you can do a great deal of harm and make your life and your husbands much harder than it need be quite apart from driving a wedge between you and your husband.
There is also a strong possibility that likemost medics she has not met MSA before ( always use the full form of Multiple System Atrophy) and is confusing it with one of the other diseases with M in like Motor Neurone or MS
I think S-i-L is in denial My own daughter bought all sorts of supplements when her father was diagnosed as a combination of denial that this rotten disease is incurable and a wish to try anything. Sadly nothing made the slightest difference but at least she felt she had tried.
If you are used to helping patients and making them better it must be desperately hard to have to come to terms with a genuinely incurable disease especially in someone you love
But bullying you and using emotional blackmail is NEVER acceptable. She must cope with her own problems
Cats. The answer is very simple and very clear. They have no effect at all exept to offer warmth and comfort to the people who like them. MSA is a very rare disease. 4 cases to one hundred thousand of the population. If cats had anything at all to do with it there would be nearly as many cases as there are cats and it would be extremely common
I am sorry your difficult life is being made harder by wellmeaning "help". But your husband is not her patient and she has no right to invite herself to stahery with you and certainly not with her devices or to undermine your care and confidence.It would be wonderful if she were right but unless for some reason your husbands diet is deficient tes suplement willnot help. It hisnot his gut health which is at fault but the part of his brain which sends the instructions
Sorry to meet you this way
FredaE
Thank you so much for your reply. I live in the United States, in Colorado. I know that having my sister in law talk to our neurologist (who is well educated about MSA-C) would be a huge mistake. She is very opinionated and would probably try to fire him and take over herself. The problem is she doesn't believe this is what he has, and I can't do anything to make her realize that it's what it is. She says the doctors" don't know what they are talking about, and they just throw things at you". After showing her the images of his MRI that show the "hot cross buns sign", per our Neurologist is a sign that he has this disease, she simply says "that doesn't mean anything". I will let her come and do her thing, and I will remain quiet, because there really isn't anything that can help, so why not give it a try right? But my cat and I will probably remain downstairs away from her. It will be a long 2 weeks.
Such a brilliant reply. I feel supported and its not even me. Xx
Hello, I was composing a response to you in my mind when I saw Freda’s reply pop up and she as ever encapsulates everything I would say but with so much more eloquence than I could muster!
I underline every word that Freda has said; life is bad enough with MSA without an interfering sis-in-law on the sidelines.
I know you live in Colorado and so I suggest you download from the MSA Trust (UK) website as much information as you can and send it to sis. I’m sure the Trust nurses will help with any specific questions you may have.
Now is not the time for witchcraft and magic potions that will end in disappointment. Eat well, take sensible supplements and enjoy your life together- including the cat - having some happy times and making as many memories as you can.
Take care, Ian x
do you have a website for the MSA Trust (UK)? I tried to google it, but only got a page that said it was not a trusted site, so I didn't continue. Thank you for always replying, I really appreciate your information.
This is the website addressmsatrust.org.uk
I stayed on this group after my husband died in 2014 because I felt he had paid such a heavy price for our experience and knowlege that it would be impossible to waste it when we both may be able to offer some help to other people on the same journey. Now I feel the luckiest person on here. I have a new life in a new part of the countrywith a lovely new partner. Even lockdown has not been too bad for althoug at our age we do not take any risks and there are still so many parts of Cornwall that I am waiting to explore. and goodness knows when I will see my daughter again.
Everyone who has dealings with the hideous disease we called The Beast has different experience and needs but all share the desperate need for an answer to their first post even it is is just welcome to the club no one wants to join. I don't know the answer to your question but I will be thinking about it. A rare disease is like being cast adrift on a rough sea without knowing which is the front end of your boat!
Life goes on. You are so right. This is just the worse part of it. Glad you're in a better place now.
I am so glad you have good medical support. It would be even worse if you were to get bogged down in doubt. It is always hard to do anything which destroys a patients hope but it seems you are at the moment the only one who has accepted the reality of your situation. The hot cross bun is the nearest thingto a definite diagnosis. I am afraid. I hope your and your dear cat can have some time to yourself and manage to purr your way through what could be a very difficult fortnight.
Hi. I sympathise with your predicament. We have a friend who is convinced that gut health is the answer and doctors no nothing. We were persuaded to have Tony’s hair analysed and as a result he tried no sugar, no caffeine, no gluten and no dairy, as well as lots of other things. Also various supplements. It made no difference so he gave up after six months. She then wanted us to go to Tenerife to “an amazing woman” she knows who could “ sort him out” and was very put out when we wouldn’t. I got the impression she thought I was being negligent. She seems to have given up now and harmony is restored but as a carer you don’t need people who make you feel inadequate. Life us hard enough and we are all doing the best we can. Good luck in managing the visit.
Thank you for your reply Annietutt. I know that my husband is grasping at anything he can for this not to be MSA-C, and if there was hope that his sister could actually help him, and we could prove the doctors wrong, what a glorious day that would be. Unfortunately, as I see his symptoms worsen and worsen, and everything we have read, studied and been informed of is happening, I feel we need to accept it. It feels like a tug of war I am going thru, putting my husband in the middle of his sister and I. You're so true that life is hard enough.
Sorry to say get rid of her, his sister that is! what a load of rubbish. can't you see his sister thinks your not doing enough for him and she think she knows better! My Jan Has Now Stopped all medication her wishes although she is in the later stages of this illness , she is a lot brighter and not in pain which is the main thing. my advise tell his sister to back off! sorry and just do your best.
Thank you for your advice Bruce. I told my husband I would go off on her if she started pushing her weight around, and his response was, "i know you will". My husband is trying to grasp anything that will help him as he has declined so rapidly in the past few months, so I want to support him in "trying" anything that would help, but I draw a line when it comes to my cat. It is just so over the top in my eyes, so I'm thankful to hear of support for me and my opinion. Thank you again
This is the path my dad has taken. Reducing and declining the meds has worked for him…
Hello I hope the American MSA coalition could help you. They support healthcare professionals with accurate information - I suspect she may be resistant to this but at least they've got a support helpline for you! Grief is a funny thing isn't it. Xx
Https://multiplesystematrophy.org/
thank you for this link, I will check it out
Please be brave and stand your ground. I agree with everything FredaE and the others have said- especially Bruce!! Sound advice. I think your mental health with suffer from this visit, it is obvious that it already has even before she arrives.I am going to be honest and say that her ‘take’ on your husband’s illness beggars belief, especially regarding your cat! Please take control of the situation before you both suffer.
You and you alone know your husband better than anyone, you are coping as well as anyone here is doing or has done, and she has no idea of the day to day reality of caring with someone with MSA.
Keep the cat, ditch the sister in law!
I send you and your husband my very best wishes.
Hello I am a MSA patient and hopefully you may find page 14 of this link helpful as I have
ataxia.org/wp-content/uploa...
The author is Vikram Khurana from Harvard and Brigham, and sits on the board of Multiple System Atrophy.org
Page 14 highlights evidence based treatment including supplements and mitochondrial’cocktails’
Perhaps your sister in laws energy can be directed to find the best brand/price point for each of the corresponding symptom that your husband would venture trying
Hope this helps
thank you for this link, as always we look at anything that may give us more insight on this horrible disease
Whilst I'm sure she thinks she's the expert in msa, if most of the specialist medical thought that was remotely the way forward. Would we not all be encouraged to use this treatment plan? There is no new treatments out there. I asked our neurologist should we change diet etc and was told just get on with living. It is frustrating and i understand her need to find solutions. Its probably her way of coping. Good luck with the visit and let her shate your load. Big hugs xx
I agree with what you say. It's hard to understand someone who "knows it all". I think my best defense at this point is to just let her do her thing while she is visiting, and then go back to our life after she leaves. As you say, I think it is her way of coping.
Does she have a rationale for why she thinks the cat is a problem?
If your husband is allergic to cats, then I could see perhaps worsening of symptoms. Perhaps zoonotic infections could be a trigger, but I don't know of any associations of MSA (or PD) with cat ownership - and at this point the 'cat is out of the bag' anyway. If she is concerned about something like a flea collar or cat litter dust or fragrance, then you could stop using/ change brands (plain clay is best IMO & I don't like brands that don't list all ingredients, e.g. FreshStep. Litter choice could impact cats' health as they wind up eating the litter by licking their fur.)
~
One supplement I would be wary of is glycine, often touted as neuroprotective. It may be so for healthy people but there were some studies by Lane et al. in the early 90's that make me wonder about it for people with MSA, ALS, and some other illnesses. Below are the links to the studies:
ncbi.nlm.nih.gov/pmc/articl...
pubmed.ncbi.nlm.nih.gov/982... (abstract only, article is paywalled)
Thank you for this information. I am going to forward this to my sister in law.
You're welcome. I hope things get better for you.
I'm having a similar issue, I guess. I've already decided to keep the cat since my daughter is so attached to him, but if he came down with something serious like cancer I would not opt to treat him; he has his own health issues and he would probably not do well and likely suffer unduly.
In our case, I think we may have picked up an infection from him which triggered our allergy problems. My daughter has Celiac and oral allergy syndrome. She was diagnosed after having to be hospitalized for 5 weeks for intractable vomiting. She had been ill the preceding year with unexplained weight loss, nausea, mild anemia, menstrual problems, etc. I had had what I thought was a yeast infection that turned out to be eczema, then I started having hives and nausea, reactions to foods, etc. My daughter still vomits sometimes when airborne allergens are high ; she vomited a couple of times last week when our birch tree had its catkins out. I think about cutting it down but my husband says it doesn't matter as there are so many other birch trees in the area. I think having a point source right in front of our house is not good.
A few years before this our cat started throwing up all his food and I had to take him to the vet a few times to get subcutaneous fluid injections. The vet advised us to start trying various hypoallergenic foods, and we went through probably a dozen before we found one specific flavor (duck) of an Rx hypoallergenic formula. That's all he eats, plus 2 pieces of a fancy brand treat and also he gets a probiotic supplement recommended by the vet that seems to help a bit (Purina FortiFlora). If he eats something random off of the floor as he has a habit of doing, he throws up. This doesn't happen too often, though. I think it would be an awfully weird coincidence that our cat has similar symptoms to us and there is no connection. Some say this sort of thing is caused by mold exposure and perhaps we have mold and it affected our cat first - so I can't be certain it was triggered by an infection. OTOH people with long covid have some symptom overlap and it seems similar to other post-infection syndromes.
My daughter is allergic to cats and with OAS, it does make her worse to just have him around. I wonder about the possibility of re-infection from him and whether or not this is not a post-infection thing but an ongoing infection. But I think we both have whatever it is now and I note many people struggle for decades with ME/CFS and MCAS regardless of whether they have a pet. Who knows - maybe I'm re-infecting him.
We have improved somewhat with use of HEPA air filtration units; we have a big one in the main portion of the house and a smaller one in her room. We also upgraded our HVAC filters. I don't vacuum as much as I should, though. I got a new HEPA vacuum when she was in the hospital to vacuum up all the cat litter dust - we had been using Swheat Scoop.
When my daughter was hospitalized, they gave her Reglan and she had a rare
adverse reaction called neuroleptic malignant syndrome (it was horrifying). Her grandfather
had MSA. I think this indicates there is some sort of dopaminergic function
issue in our family. I have PDD-NOS and have experienced some early symptoms
similar to my father's; this predates the allergic-to-everything problem. I found relief from dizziness on standing by taking MitoQ; I have switched to taking ubiquinol due to cost (I use Natural Factors); I also take PQQ and ALCAR - and quite a few other things, actually - but those are the ones that have the most research support, I think. My daughter and I are also carriers for a fatty acid oxidation disorder gene - MCAD deficiency - and I think my father had it, too, based on other family members with hypoglycemia. I am symptomatic but my daughter is not. My father wasn't, as far as I know, but he had rhabdomyolysis that was not due to statins; the doctors said they thought it was related to MSA.
One last thing - sorry this is so long - if your sister in law wants to try TENS or microcurrent - I think this could be helpful but just keep in mind that the skin of people with MSA tends to be quite sensitive and prone to ulcers. Some people have skin reactions to the site of application, as my daughter did - she used a dedicated wrist TENS device for nausea which just uses bare metal (no adhesive) and said it helped but it caused her a rash, unfortunately.
The air filter was one of the first things my sister in law had my husband buy. We have tried the TENS unit also, which as you warned caused more than normal redness after we removed the pads. He didn't seem to think he got much relief from it, so he hasn't tried it much more than a couple times. He is getting more and more symptoms as time goes on. Unfortunately more of what I read and am told about this disease and others experience, it feels as if we are just preparing for what is next. My husband will tell me, "my leg is doing this weird thing, and it burns", and here I am saying, "oh yea! I read that on the MSA support group website. "
Are we nearing the end?
My heart is aching...
Stomach pain with msa 
What is considered the latter stages of MSA?
