Hi all,
I am considering traveling to India for Ayurvedic treatment. I had SCA since 90s and was first diagnosed in 1997.
Please let me know your thoughts and feedback. Any recommendations?
Thanks.
No thoughts or comments, but would love feedback on your return as to how it went.
Good luck!
Hi,
I have full body Ayurvedic massages, these are great :-) $100 Australian for 1 1/2 hours and our health care will pay part of the cost
Yes we can also help you with Ataxia, take this and this and this potion....and by the way give me your money as well
Save your money for the massages in your own country, the rest is a sham ;-(
Where is the evidence before go and waste your money???
Yes, I think you should do it. If you don’t have the Ayurvedic treatment you may pass and if you do the Ayurvedic treatment you will pass someday anyway.
I more or less agree with Eric.
If you have spare money floating round, it would be an enrichcing cultural experience, and is unlikely to do any harm (unless you get Delhi belly...).
However, if you're short of money or would make yourself financially worse off to go and do the treatment, don't do it. Think of how many massages or what other quality of life you could achieve spending the cost of the trip and treatment in other ways.
It's natural for us to seek a cure, but there isn't one.
Be particularly careful not to give them more money than you originally signed up for. They may try saying "because this is your first treatment you may not notice much difference. Come back next year/try this other more expensive treatment to make more difference/maintain the improvements you're seeing now" (although any improvements will likely be just due to the placebo effect)".
I'm not going to say it will have no effect, because the placebo effect is quite strong, so if you think it will make a difference it probably will. But if you can find something cheaper and closer to home that you think will make a difference, try that first.
Best wishes for whatever you decide, and if you do go, I'm sure we'd all love to hear about your experience!
I would look first to see if you can get the same treatment closer to home. But other cultures have had their own forms of medicine for hundreds of years I don’t see why they would be any more or less likely to be safe and effective than western medicine. I think most people see the health care ( or any other cultural system) in their own society as being best , but objectively there is no reason to believe that. Good luck.
I don't know that other cultures or societies do see the health care in their own society as being best. Lots of people emigrate or travel in order to get access to, in particular, Western health care.
If you are looking for alternative treatment I would check out walkingwithataxia.com. The doctor was diagnosed with SCA and wasn't willing to just sit back and let the SCA take over his life. It is based on keep moving and correct posture. I have only recently started working on this but there are other members who have had him come and help him. He sold his home and travels the country (U.S.) in an RV and only asks for donations, he doesn't ask for a fee. This makes more sense to me than diet/supplements.
Dear Sp, I know nothing about this treatment, but if you decide to try it, please keep us posted on how it goes...,;o)
Yes, many people do emigrate for western health care. Many others effectively use other systems. It isn’t like health care was invented a hundred and fifty years ago when physicians in the U.S. And Europe first realized they needed to wash their hands to prevent infection. I don’t understand why people would think that Traditional Chinese Medicine, or Ayurvedic or using Curanderos would be innately worse ( or better) than getting a prescription filled at a pharmacy.
Trying not to be offensive, but it think it’s pretty insulting to assume that any good effects from anything that comes from a non-western medical system must be due to a placebo, that terms like " potion" are used and an assumption is made that some huckster will try to charge extra money.
Yet if you go for treatment in the U.S. You will almost certainly incur charges beyond what you expected and be prescribed medications that may have limited results, the effect will build up over time and there may be horrendous side-effects. But somehow that’s normal and expected— but some sort of inferior scam if it’s using non western systems? How does that make sense?
I don't for a second think other medical traditions are innately worse. I'm agnostic about them. I haven't seen any scientific evidence showing them to work. They've been around a long time, and lots of people use them, so it's possible that they, or parts of them, may work, and just haven't been subject to scientific testing yet. But I would never recommend someone with limited means (and I don't know whether or not that applies to the OP) travel long distances and spend a lot of money to get them, when there's no evidence they'll help more than staying at home and getting a weekly massage.
I won't be simplistic and say that people in the West have better health because Western medicine is better - there are far too many other determinants of health at play to be able to say that.
However, I will note that I have an Indian second cousin (in India) who is a neurologist. When I asked her about my mother's SCA, she didn't say "Oh, you must send her over here, the ayurvedic treatment for it is great!"
ETA: I don't live in the US, by the way, so your comment about incuring additional charges doesn't apply. I agree that the US health system is, well, I won't call it a healthCARE system.
But to address your broader question: yes, medications may have limited results, the effects may build up over time, there may be side-effects. The question is not whether those things are normal and expected, but whether they are known - which they are.
P.S. I see the OP lives in Tehran, so the US health system doesn't apply to her either.
So finally did you went to India ? What was the outcome ?
A very late reply to this topic. I am from India and was diagnosed with.SCA1.
I have tried Ayurveda and homoeopathy and other Treatments along with taking my vitamins and CoQ10
This is my experience and others may have different experiences.
Ayurveda did not stop the atrophy in me. I had a treatment schedule of massage, steam, diet and meditation.
The massage and steam helped a huge amount in relaxing the body at the end of the day. The diet was great to get a healthy eating routine
The medication DID NOT work.
You can get recommendations for diet from anyone. The massages with the oils and steam are also available.
For me, at least, there was no improvement in SCA at all with this.
Many of us have done what we can to try and alleviate symptoms…that is really the best we can hope for at this current time.
Best wishes.
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Just a quick update on this topic.
From September last year to January this year, I have not been able to get any sleep. Basically, if I lay my legs flat, the muscle start paining and cramping. The only way I could stop the pain was if I sat in the chair, so I used to sit all night upright, and try to maybe get a few minutes of sleep. Typically, I sit in the chair all night till about 4 AM, and then get maybe one hours rest.
Just led to lot of fatigue and inability to work. I finally met a Ayurvedic doctor After going through about six of them. This doctor was very clear that she would not cure anything and could not help in my SCA 1 condition. What she said she could do was help with my issues that arose from this.
Having spent a 21 day session at the clinic, the following things have happened now:
- they gave me a mix of Ayurvedic oils to Massage, my legs
- I also got another oil for my head massage.
- these oils are available online to anyone and I use it by myself every morning
From February of this year, when I went there to date, I have slept without any pains for at least 5 to 6 hours a night.
I have also modified my diet and exercise. I am able to get up at 5 AM, do all my exercise, drive to the office, work all day, do my cooking and get restful sleep.
I also do about two hours of yoga, four times a week.
A dull muscle pain (like when you workout too much) is there throughout the day, and there is fatigue by evening. The MRI and other tests show no improvement in the SCA 1. I still have severe balance and walking issues.
What I can say from personal experience is that this Ayurveda and Yoga has not helped in my condition, but for sure, has helped tremendously in the issues from it.
It can be worth exploring therapies ..everyone needs relief from symptoms. 
Is it possible you are overdoing things in general..this can cause fatigue.