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Old 06-21-2012, 06:14 AM   #21
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Sorry to hear about that, I think the prognosis is much better today then it used to be...look at Ann Romney, she was diagnosed 15 years ago.
TJ
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Old 06-21-2012, 09:48 AM   #22
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Grizz, I learned something about MS from you today. Sounds like you and your DW have the right frame of mind going forward. Best of luck on this!
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Old 06-21-2012, 10:22 AM   #23
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As you have already seen, MS is much more common than many people realize. DH was officially diagnosed in 1999 at 47 but had symptoms back as early as 1987 and maybe earlier. He retired on disability in 2006, primarily due to fatigue issues. He has not been able to walk since 2008, and uses a scooter and power wheelchair to get around. But he is a deacon at our church, an ESL teacher, and does various other volunteer projects. He has an amazing attitude about everything, which I think makes all the difference.

He tried several of the disease-modifiying drugs with no noticeable impact, and has participated in two clinical trials. At this point, he is not on any treatment medication although his neurologist keeps up with the new drugs to see if anything might be worth trying.

The biggest thing, as others have said, is that everyone's disease course is different. Find a good neurologist and go from there, one day at a time.

All the best to both of you!
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Old 06-21-2012, 03:02 PM   #24
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My sympathies grizz,

I'm in Sk. (which I was led to believe is the MS capital of the world), I'm sure Ab. is the similar. Anyway, since DB was diagnosed 4-5 years ago, I've done a bit of research. There are 4 kinds of MS. Which does your DW have? DB has PPMS, the worst and has probably gone downhill faster than 90 percent of his peers. Your DW is likely to have a far better prognosis.

As to the "liberation" treatment, I'm quite sceptical. I always was but since DB and SIL thought it might work I paid for two tries. While there may have been a brief (read 3 week) placebo effect, nothing good happened. If your DW has something other than PPMS, or if DB was an anomoly, YMMV.

Like the others, feel free to PM me. I'll tell you what I can.
As you can imagine, PPMS is our greatest fear as my wife's aunt has moved from RRMS into SPMS (secondary progressive) which if I understand correctly, is really similar to your DB's condition, and has switched to a much accelerated and aggressive form of MS.

Saskatchewan does indeed share the title with Alberta. Take a look at direct-ms.org. There's a map somewhere in there that shows the worldwide distribution. I believe it's in an article titled "The Alberta Disadvantage".

The neurologist believes that she has RRMS (relapsing remitting), which, if she's right, means that DW's symptoms will come and go on no set schedule, but eventually and progressively get worse, leaving behind a trail of nerve damage and potential disability with each flare up of symptoms.

The neurologist is only basing her guess that it is RRMS on statistics and the type of symptoms shown so far. Unfortunately the symptoms have been hanging around for almost 10 weeks so far, but do seem to be improving somewhat overall.

For now it's diet, rest, education, and hope.

BTW, where was the "Liberation Therapy" performed, and if I may ask, what was the cost each time? I'm mostly curious if the second try is less costly than the first.
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Old 06-21-2012, 04:48 PM   #25
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BTW, where was the "Liberation Therapy" performed, and if I may ask, what was the cost each time? I'm mostly curious if the second try is less costly than the first.
The initial one was in Sophia, Bulgaria and cost about $6,500 plus transportation and living costs for his wife and son who accompanied him. Second was also Sophia, can't find records but I seem to remember it being cheaper.
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Old 06-25-2012, 03:55 PM   #26
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I'm sorry for your wife's MS diagnosis.

I was diagnosed over 8 years ago at the age of 45. My neurologist believes I have the RRMS but I am not sure since I have not had any known relapses in the past 8 years. I believe I am SP now. I seem to have a very slow progression of symptoms. I do find that heat makes my symptoms (weak legs, fatigue, co-ordination) worse. I still walk unassisted most times and people would not know I have MS. I do use a cane on longer walks (20 min or longer). This disease is very unpredictable and is very different from patient to patient.

I am not on any special diet but I am on Avonex injections once a week. I saw my neurologist last week and he recommended that I take 2000-4000 iu of Vitamin D daily. He said there was a study released that shows that it helps. He also told me to have my 3 children take Vitamin D supplements also.

I understand the shock of the diagnosis. Please take one day at a time. I hope your wife has a mild course of the disease. I'm glad to see that you are researching the disease and supporting her through this. You seem to be a very caring husband. Good luck to you both.
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Old 06-25-2012, 06:04 PM   #27
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I know nothing about this disease, but here is the website of a Dr. who was severely compromised from MS, and has made a startling recovery.

Ha
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Old 06-26-2012, 02:28 AM   #28
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I know nothing about this disease, but here is the website of a Dr. who was severely compromised from MS, and has made a startling recovery.

Ha
Where?
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Old 06-26-2012, 09:10 AM   #29
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Where?
Sorry-


Terry Wahls MD | Defeating Progressive Multiple Sclerosis without Drugs | MS Recovery | Food As Medicine

And here is her bio page:

About Terry Wahls MD | Recovery from Progressive Multiple Sclerosis
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