6 Months after diagnosis....

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6 Months after diagnosis....

Postby speels » Wed Jan 25, 2012 6:02 pm

Hello everyone,
I just discovered this board today (at work, of all places) and thought I'd introduce myself. I'm a 48 year old male, born and still living in Canada. After experiencing some right sided visual deficiencies a couple of years back, I started with a journey of a thousand cuts, being moved and referred from one specialist to another.....I was finally diagnosed with RRMS six months ago after an MRI confirmed what I had suspected for a long time. For a long time I've been experiencing pins and needles, numbness and a sensation of heat in my left arm and leg, a recurring blurry spot in my right eye, and a very annoying tendency to trip on my left foot. I would say I've had two "attacks" in the last year, both in late fall/winter.... but the sensory issues have never really gone away.... they come and go as they please and I may notice them anytime.

My doctor (the head guy in the MS clinic up here) said it's a very mild case and hasn't put me on any drug therapy, he wants to wait until I have another MRI in June.

I have to say I haven't been affected in a noticeable way by MS, but it has impacted my job.... i'm now on modified duties (I have no issues with worrying about my future, i dont have to concern myself with that, fortunately), but it seems to me the sensory deficits are more than they were last year.

Does anyone have any thoughts on whether waiting six months for another MRI is a good thing/bad thing, or irrelevant in my case? The doctor figures it's going to be a slow advancement for me, but would I benefit from starting drugs now? Would there be any problems caused by starting them now?

Hello to everyone again, and thanks!
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Re: 6 Months after diagnosis....

Postby MarkLavelle » Wed Jan 25, 2012 11:38 pm

speels wrote:Does anyone have any thoughts on whether waiting six months for another MRI is a good thing/bad thing, or irrelevant in my case? The doctor figures it's going to be a slow advancement for me, but would I benefit from starting drugs now? Would there be any problems caused by starting them now?
Once you've been diagnosed, additional MRIs just record the progress of your MS.

I'd ask your dr. why you *shouldn't* start on a DMD now. The whole point of them is to delay the next attack, which no one can predict (neither when nor how severely it will affect you).

I have a 'mild case' too (95% sensory, only 2-3 lesions), but I was eager to get on a DMD.

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: 6 Months after diagnosis....

Postby want2bike » Thu Jan 26, 2012 5:01 am

If you beleive the study done by the NHS in England people doing drugs did worse. Everything I have seen suggest your choice of food is the answer. Dr. Swanks diet and the paleo diet has shown success in treating MS. Hippocrates the father of western medicine said "Let your food be your medicine and your medicine be your food". The doctors seem to have forgotten his teachings.

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.franksherwood.com/tnms.htm

http://articles.mercola.com/sites/artic ... nking.aspx
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Re: 6 Months after diagnosis....

Postby DougL » Thu Jan 26, 2012 6:22 am

welcome speels. what part of Canada?

i am quite new to world of MS but in my opinion waiting is the worst thing you can do. well second worst. worst is listening to any docor who tells you to do nothing but wait.

perhaps drugs aren't for you. that is for you to decide. i would suggest spending some time reading this forum and other places (some good facebook groups etc). here you will learn many options including drugs, diet/vitamins/exercise, back alignment, dental implants, CCSVI treatment, stem cells. etc etc.

i am sorry to hear about your diagnosis. if it is any help, i have met many pwMS in the last year. some like my partner who have had it for half their life. all have told me they have said a new word in the past 2 years. a word they dared not speak since the day they were told they had MS. the day they too were told to wait or take these drugs.

that word is hope. hope for improved quality of life. even hope for a cure.

good luck on your journey.
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Re: 6 Months after diagnosis....

Postby daverestonvirginia » Thu Jan 26, 2012 8:14 am

I think it's great that the doctor can say "The doctor figures it's going to be a slow advancement for me", but I do not know how he/she can say that? I was dx about the same age as you, and it was a real surprise to me. I did not wait and I would not think you would want to wait taking whatever steps you feel are needed to fight MS. I am on the Best Bet Diet, Vitamin supplements and Copaxone all of which I started right after I was dx. I know you might not want to hear this, but I do not believe the doctors have any idea if the course of the MS will be bad or slow when someone is first dx. Only time will tell. Good luck, Dave
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Re: 6 Months after diagnosis....

Postby speels » Thu Jan 26, 2012 2:03 pm

Thank you everyone for your comments.... It's great to know there's a lot of people out there who are willing to share their experiences and knowledge.

After I posted the original comment yesterday, I sent my Dr an email asking those questions... I got a reply today, I'm on the cancellation list to see him again. I imagine he's not too comfortable doing consultation electronically. He said that the sensory issues are there to stay, that drugs won't eliminate them, although a friend of mine who is on Copaxone said he could feel his leg after starting the meds...

Want2bike, can you tell me if your diet only treatment is effective? I read it, it sounds like a lot of common sense that everyone should follow anyway!

DougL, I'm in Ontario, just north of Toronto.... I'm going to the MS Clinic at St Mikes. Thank you for your words of encouragement.

Dave, thanks as well... i'm planning on asking the Dr "why not now" when I get to see him.

Thanks again everyone....
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Re: 6 Months after diagnosis....

Postby want2bike » Fri Jan 27, 2012 7:53 am

Yes, diet is the only real treatment for these nerological diseases. For me and many others we have healed ourselves. Haven't seen anyone cured by drugs. Seen many get sicker because of the drugs. Before you decide on the drugs get all the information. You are lucky your doctor doesn't want you on drugs. Many doctors are paid by the drug companies to put their patients on drugs. Yes a good diet is common sense but it is a lot easier to just take a pill. Problem is the drug is not going to help and it might make you really sick. Drug companies goal is to make money not heal you.

http://www.greenliveforever.com/healthy ... tion-claim

http://www.askapatient.com/viewrating.a ... PerPage=60

http://www.askapatient.com/viewrating.a ... ame=AVONEX

http://www.healingdaily.com/Doctors-Are ... the-US.htm
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Re: 6 Months after diagnosis....

Postby patientx » Fri Jan 27, 2012 8:38 am

Speels:

Mark and Dave gave some good responses. Your doctor can really only tell you that your MS is a mild case now. While I have read about some general trends, there aren't really any good predictors for how MS will progress in an individual. And like Mark said, the point of the DMDs is to prevent attacks. So, if you've actually been diagnosed with MS, it doesn't make much sense to wait for more damage to be done before starting a DMD (if you choose to use one). Generally, the waiting comes in when they're trying to diagnose MS, since a diagnosis requires more than one attack. Even, in that case, opinions differ - many neurologists favor starting a DMD after just one clinically isolated event, since the percentages are high that a CIS will develop into MS.

On another note, I would be circumspect about stuff you read on this site, or any website. To be sure, there's good information and advice out there. But, there's also a lot of misinformation and outright nonsense out there, so it's really buyer beware. For example, some people (for whatever reason) are really dead set against using DMDs, and try to convince others to follow that route. They love to cite the recent NHS study about the ineffectiveness of the DMDs, but they fail to mention the severe flaws with that study, or the financial motivations behind it. And statements that diet is the only real treatment are just ridiculous. Swank wrote his book before a lot of what is known about the immune system was discovered, and his theory about what causes MS was incorrect (by the way, I generally follow the Swank diet, along with using Copaxone). Then there's the really crackpot ideas that have infected this site lately....
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