regarding chronic polymyositis treatment

Posted by rama @rama, Oct 4, 2016

Hi,am with chronic polymyositis for about 11 years ...now am 29..even though I have visited most of the hospitals in India but there is no improvement...my condition becoming worse day by day..now I was not able walk without support and even my upper limbs also got affected.finally two years back gone through stem cell therapy but no improvement in it..my pain also becoming worse.can you please me through this and is there any possibilities of getting improvement and am ready to get treatment in your hospital

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tonyc55 | @tonyc55 | Oct 4, 2016

Try cannibus with a lot of cbd for chronic pain

Justin McClanahan, Moderator | @JustinMcClanahan | Oct 5, 2016

Hello @rama, and welcome to Connect.

I moved your message to the Autoimmune Diseases group to introduce you to other members talking about polymyositis. I would like you to meet @johnnyv46 who has experienced similar complications as you but has found ways to improve day-to-day life and has a positive attitude towards coping with polymyositis. I would also like to invite back @pinkmk, @kbellevue, @reginadaniel, @athack69, and @sallyc, who all shared concerns about polymyositis in the past.

Rama, it sounds like you have been thorough in your exploration for answers regarding your diagnosis and management of polymyositis. I discover through this article http://mayocl.in/1D3MZYY that polymyositis tends to usually only affect lower limbs. Did your upper limb pain and fatigue result from using them more to support your body? You mentioned stem cell therapy treatment, have you tried any other treatments of coping techniques?

rama | @rama | Oct 7, 2016

In reply to @JustinMcClanahan "Hello @rama, and welcome to Connect. I moved your message to the Autoimmune Diseases group to..." + (show)

Hi thank you so much for your response..my upper limbs got affected two years back..while in rest position I can lift my hands to extent but on sitting position I cannot ..please tell me is there any improving treatment in mayo clinic..Regards
Rama

Deena | @mrsdeecee | Oct 10, 2016

In reply to @tonyc55 "Try cannibus with a lot of cbd for chronic pain" + (show)

Tony I thought the THC was for pain? Maybe that's why it did not work ? I thought the CBD was for seizure types of illness? Thanks for info Deena

tonyc55 | @tonyc55 | Oct 11, 2016

In reply to @tonyc55 "Try cannibus with a lot of cbd for chronic pain" + (show)

The cbd is for pain you can go 18 to 1 or 8 to 1 cbd to thc oil spray or u can vape it

JamesThee | @jamesthee | Oct 31, 2016

In reply to @JustinMcClanahan "Hello @rama, and welcome to Connect. I moved your message to the Autoimmune Diseases group to..." + (show)

Polymyositis can effect the upper limbs. As well, inclusion body myositis can effect the muscles of organs (throat, lungs, abdomen). Unfortunately, I watched all of these issues with my brother.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Nov 1, 2016

Thank you, @jamesthee it must have been so hard to see your brother suffer.

@rama, I'm glad you joined our group; I too, am originally from India. I noticed in one of your earlier messages that you enquired about getting treatment here? For more information about Mayo Clinic, you can go here: http://www.mayoclinic.org
If you would like to make an appointment here is the link: http://mayocl.in/1mtmR63

I hope @pinkmk, @kbellevue, @reginadaniel, @athack69, and @sallyc, return with some information.

@jamesthee, could you tell us a bit more about your brother? Do you have any suggestions for @rama?

JamesThee | @jamesthee | Nov 4, 2016

In reply to @JustinMcClanahan "Hello @rama, and welcome to Connect. I moved your message to the Autoimmune Diseases group to..." + (show)

Hello Rama, as I understand current/recent treatments your age is certainly a plus for you. It seems that my brother had this disease well before it was recognized -- perhaps 2 decades or more. Just a very slow weakening that his doctor felt was due to poor physical fitness. So, good for you that you have some treatment ideas at your young age. I'm sure you must be frightened by the illness and probably have read enough to put you in a dark place. However, unlike by brother who did not reach out to even as much as talk about himself, you have done yourself well by contacting others. This is a very strong asset for coping. Of course there are dark issues threatening, but I can tell you that my brother lived a long life before he was incapacitated -- fully participated in raising his 2 children; worked full time until he was 60y/o; enjoyed his life despite circumstances. He was also hopeful that "any day" there would be better research done on myositis and that some help/breakthrough would be around the next corner. Hopefulness. I admire your strength and your ability to advocate for yourself.

JamesThee | @jamesthee | Nov 4, 2016

In reply to @JustinMcClanahan "Hello @rama, and welcome to Connect. I moved your message to the Autoimmune Diseases group to..." + (show)

Rama, you might take a look at the website myositis.org. It offers many different directions from up-to-date information, group talk, latest clinical trials. They also sponsor web programs that you can signup for. Research papers that are referenced can offer further reading. Give it a try, Rama, if you haven't already.