MSA

[Ohmdotcom]

Hi I was diagnosed with MSA in August this year and went for Stem cell treatment in September. I was told to be patient and wait until at least 3 months had passed before I saw a difference. However, I've not heard of good results for this condition. Does anyone have a success story to share?

[FredaE]

Who suggested stem cell treatment? Which part of the world do you live in? I ask because then we can suggest places where you can get reliable information about treatment of MSA. Stem cell is not a usual treatment

[Ohmdotcom in reply to FredaE]

Hi there, I decided myself to go for Stemcells and so headed to Serbia for treatment. I now live in the UK, after being advised I should return from Ireland. What do you advise?

[Yanno]

Hello there

You are the very first person I've heard of who has had stem cell treatment for MSA. My first port of call for any advice, particularly in the UK is the MSA Trust - their contact details are frequently mentioned elsewhere in this community. I would be very interested in hearing if there has been any success with this type of treatment.

Very early on after Jackie's diagnosis we decided that we would try and live our lives as best as possible to the full and not to chase any 'rainbows'. Other than a couple of noninvasive supplements Jackie chose not to look for alternative treatment. Having said that, I am sure somewhere out there they may be something that could slow or stop the deterioration with MSA. The trouble is it's all too easy to spend what time one has chasing after an illusive 'cure' rather than enjoying that time.

I so hope your treatment works, but I so fear that it may not.

Take care, Ian

[Janeyl]

There is no current known stem cell therapy for MSA that has been proven to be either safe or effective. Plenty of people in the US MSA support group have been prepared to invest large sums of money in “a shot in the dark”, with little or no return on their investment.

Where did you get your advice? AFAIK, there is no MSA centre of excellence in Serbia.

[Ohmdotcom in reply to Janeyl]

Hi there,

Idid my own research and came to the conclusion this was worth a try by myself. Also, the company mentioned MSA help. (the first!) Like I said at the beginning, it's early days,, so tll keep you posted.

[Emma_MSATrust Moderator Staff]

Hello,

We are often asked about stem cell treatment at the MSA Trust, and we advise that although some very small trials have shown there may be potential benefit for people with MSA, at this moment in time there is not enough information available about how safe or effective the treatment is, for it to be recommended for people with MSA.

Further clinical trails would be necessary and essential to asses the safety and efficacy of stem cell treatment for MSA. We do not know of any stem cell trials in the UK currently recruiting people with MSA.

Medical colleagues have also advised on this subject, and offer the following advice:

'The few areas across the world that appear to offer this treatment (not as a research trial ) are not regulated or working within best practice clinical guidelines. For example, there is no way of knowing what sort of stem cells they are using; if indeed they are using stem cells at all; how these cells have been harvested and prepared, and the overall procedure and follow up is lacking in evidence. This also means it is not easy to clarify differences and compare between treatment centres. In most cases people have to pay to get to the country, and use a hotel within reach of the centre, before and after the procedure. Usually people are back home in a short time period, so if there are any problems they will need to seek medical care back home, and the doctors have no idea what the person has been given, or what potential complications there may be, so it may all become unsafe'.

You may wish to look at the website clinicaltrials.gov/ which highlights current ongoing research.

One of our Nurse Specialists also discussed stem cell treatments in clinic with Professor Houlden who is a consultant at Queens Square in London. He reiterated that unfortunately there isn't enough information about its efficacy in treating MSA yet to say it is a viable option. He is interested in this for future research, but at present it isn't something he would recommend.

Our website and contact details can be found at msatrust.org.uk, please do get in touch at any time if you wish to.

Best Wishes, Emma Saunders, MSA Nurse Specialist

[Peterg11]

Hi my wife is suffering from Msa also. We had 2 different stem cell treatments in the last two years,both in different clinics in Germany,the last one in February this year. We were told it would take 6 months to see improvement. Unfortunately my wife condition is progressing at a very fast rate. Unfortunately Msa is unlike Parkinson’s we don’t have much time to wait for trial results or the safety concerns.My wife has diagnosed with Msa 2 years ago and is now wheelchair bound unable to speak/eat/ or move.We have tried every treatment possible so far with no success,but we won’t give up. My point is if you are looking for a cure try everything,don’t be waiting waiting for the medical industry or worry too much about safety concerns etc .Stem cells are probably one of our best hope for cure or improvement. I wish you well with your treatment and hopefully you get some benefit,please let us know. Peter

[Ohmdotcom in reply to Peterg11]

Thanks for your reply and I hope your wife finds things more comfortable. Best wishes

[Ohmdotcom in reply to Peterg11]

Also just out of interest how old is your wife? I am 49!

[Peterg11 in reply to Ohmdotcom]

She is 56

[Yanno]

May I reflect on Peter's comments. Whilst I 100% agree that there is a need for 'safe trials', I also agree that with MSA one doesn't have the luxury of sitting back and waiting for the medical profession to sort out the ethics, the process, the funding, the control group etc etc etc.

By way of example; Jackie had been suffering with an issue with over-granulation around her PEG site (in my layman's terms - the body producing cells to try and block the hole leading to cells growing from the site, soreness, bleeding, etc..) Our doctor has been very supportive, as she always is, prescribing various products including a very expensive product just on the market.

When recently Jax had her PEG replaced due to a leak, the consultant quietly suggested putting salt around the PEG site. What type salt I asked, anything will do..even straight from the salt grinder! One application, two days later...the problem had gone and months later hasn't returned. When I asked why this wasn't common knowledge I was advised that it couldn't be a standard practise because 'salt cannot be prescribed' and no trials had taken place to prove it was safe......IT WAS SALT for heaven's sake, we were hardly dowsing Jax with some obnoxious unknown concoction!

So, I still think we should be careful not to chase rainbows and miss the time we have together, but I also think the medical profession has to change the way trials are conducted with conditions such as MSA. Recognise the prognosis and take some documented risks so others may benefit from our mistakes if need be.

Well done for taking a risk, Ohm, my only plea would be to document your experience in as much detail as possible, good or bad, so others can learn from your own mini clinical trial.

Take care, Ian

[Ohmdotcom in reply to Yanno]

Ian, thanks for the anecdote and support, It looks as though I might be a trail blazer here, so if the effect is good I will gladly share

[JoeyLuv in reply to Yanno]

Isn't that something!? Salt!!!? You know, I used to work as a nurse. We used to apply silver nitrate, which essentially burnt off the granulation tissue. You learn something new every day

[Antonette61]

How about dr Constintino hdl protocol thiamine has anyone tried it