What can reasonably be done for Primary Progressive Multiple Sclerosis?
I have pp MS and doctors have done little for me but treat some symptoms. I have known about it 9 years and am doing better than expected and going down very slowly, but still going down. Is there any way to turn this around?
My mother has ppMS and has experienced the same treatment as you. Unfortunately treating your symptoms is all that can be done, especially as you have had this for 9 years. There is a lot of research into new drugs for MS but not for the progressive types only the relapsing remitting types. My mother had a few steroid courses which showed an improvement for a short term period, but I would be very cautious about steroid treatment as they come with serious side effects such as hypertnesion and osteoporosis .
I am very pleased that you are doing better than expected, and I hope you continue to do so. I'm sorry I can't offer any more help or ideas about it - I'm sure your neurologist is doing the best he can. (+ info
Does it take a long time to be correctly Dx with Primary Progressive MS?
p.s. all tests have been done. all negative. no lyme etc. only 2 small lesions on brain. My understanding is that that could be key to ppms. Any ideas?
Because there are some many other illnesses that can have similar side effects on the body as Progressive MS. So, it's their job to rule out BEFORE giving an affirmative DX. While many patient find it frustrating they are doing their job accurately by ruling out other disease and conditions so they can properly treat you. (+ info
What is the difference between primary, progressive and reactivation tuberculosis?
Primary TB: occurs when the person first becomes infected. A person who has the infection can have it for years and never get the illness. An infected person is not contagious.
Progressive TB: The person has active TB disease and is contagious. The disease will progress unless the person recieves treatment.
Reactivation TB: The person was treated once before and the disease has returned. This may be due to not finishing the previous treatment or reinfection.
send me an email if you want more information (+ info
my dad has primary progressive multiple sclerosis we live in pa. as you know medical marijuana is illegal?
Are we able to go to a different state and go to a doctor who could write a prescription for med. marijuana? and still be able to come back into pennsylvania with it?
It wouldn't matter if you live in PA, and got a prescription from a doctor in California for medical marijuana, then you bought your medical marijuana in California. Once you get back to PA, you are now committing a crime by possession.
http://www.norml.org (just for reference for you about states and their medical marijuana law status)
However, your father still might be in luck! :)
There is a drug called Marinol that is a pharmaceutical grade form of THC (stuff in pot that gets you high) Depending on your doctor, you might be able to get him/her to prescribe your father Marinol so he'll be able to get some relief.
Good Luck to your and your father.
God Bless. (+ info
can primary progressive multiple sclerosis deadly?
My aunt has it, and she is completely bed-ridden, she's almost blind, she is resistant to all anti-biotics, her immune system is very low, she's obese, she has no teeth, she gets mrsa infection sometimes, she gets urinary tract infections, she gets yeast infection, she has a catheter, and she's only 49 years old.
Oops, i didn't mean to say ALL antibiotics, just most.
is there anything that helps people with primary progressive multiple sclerosis?
I have P.P.M.S. There isnt much out there for M.S. patients but interferon meds. like Betaseron injectable or several others. Hopefully it will slow the progression but there is no guaranty and not much else so this is what I have done since my diagnosis 2 years ago. Make sure the person keeps moving and using muscles. A physical therapist can be of great help but its hard to find one that is familiar with M.S. And yes, there is the pain to deal with. Can you believe my neurologist said I just have to live with it. Its difficult finding the right Doctors,,,,but keep searching (+ info
I want to know if any one else has see Primary progressive MS reach this severity. ?
My mother is 49 years old and when she was 35 was diagnosed with multiple sclerosis, Primary progressive. She, is now in a nursing home, unable to talk, swallow, her eyesight is pretty bad, she can not eat or drink and has a peg feed. Her body is contorted, mainly due to as i feel poor care from previous carers not doing her physio, her knee’s are locked in a bent position. She has pretty much on 5 % mobility in her hands, she can wiggled fingers, thats about it and she is bed ridden. Now, what i would like to know, is does any one know or have seen some one with MS this bad? Because, i am repeatedly shown people with remissive MS who can walk and talk, or are in a wheel chair but can still talk and eat. I want to know if any one else has see Primary progressive MS reach this severity.
Yes I have. A relative was this bad. The outlook is not very good I'm afraid.
God Bless. (+ info
are there support groups for primary progressive ms patients?
Go to the ms website www.nationalmssociety.org. They should be able to provide you with local chapters. (+ info
Could this be Primary Progressive MS?
Please help, I could use some advice feedback.
A little history of my 'condition'.
Starting 4-5 years ago I had tingling feelings in my legs, which were transient, they would come and go every few days. I started getting them in my arms as well, and some days my entire arm would go numb. It was terribly irritating, but not debilitating. Went to the ER, they referred me to a neurologist. Had lots of tests done (including MRI), nothing conclusive.
The tingling in my legs has progressed to where it's a 24/7 ordeal. Many days I feel incredibly tired to where I have to push myself to wake up. When I roll out of bed I feel like the walking dead... then the tingling starts in the morning. Some days my legs feel like jello and it's difficult to walk. Doctors say it may be RLS, but I heard RLS gets better after exercize right? My legs feel like crap after I exercize.
My question is; could this be PPMS where the lesions are mostly in my spine and not in the brain? I say this because my symptoms never really go away, they keep progressing and I don't have other issues like vision problems.
I am a 27 YO male, and otherwise healthy.
No, I don't think so, but your IQ must be about 2 if you think you can get reliable medical opinions on a public website. (+ info
Praying for a Grant Writer Researcher. I am only 55 with advanced Primary, Progressive, Multiple Sclerosis?
Also Epilepsy for 35 years, BS degreed Lewis & Clark College Portland, Oregon a fine priate school of heritage and acclaim, former tearcher, former non-profit executive, and for lastr 15 years qith growing MS PPMS have lost all my savings for retirement and am now in Medicare at yes legally only 55 and my dies by 65 but please not in a shack by a railroad ditch. On Medicare I can no even hardly afford apartment abd I qualify got potential significant GRANTS, handicapped, non-profit, and yes business I will not dies with try yer to succeed in this life but with MS in sight blind to write need some to help write and configure best grants to survive and bless you whowver you may be. I live in Portland, Oregon.
Are you asking for help, writing grants for your own personal need with MS? I have a Yahoo Group for MS Resources, but no special skills in grant writing. I have applied and gotten several on my own. I would like to take a course in it.
Good luck! (+ info
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