This Is MS Multiple Sclerosis Knowledge & Support Community

Hello this Is my first post here, I have posted on another forum before but this one seems more direct what Im dealing with. In a Nut shell have few symptoms at this point but legs seem to be getting very week lately and Knumbness In left rib cage which comes and goes. Now I have had 2 MRI'S In last year and half and evoke potential exam was ok "within limits". With all the hype and Info out there about CCSVI and My GP mentioned the other day that "maybe theres some progression going on". He said He thinks Im dealing Remmiting/relapsing in Jan 09. Last MRI was Dec 08 and prior was August 08, It showed a little progression and some recession. This was told to me In Jan 09 When I asked him "Am I dealing with MS". Im going to the NUERO on Monday what do I wanna ask him can someone give me some pointers? In Jan 08 last time I seen him the Nuero did'nt put me on any of the MS drugs which I was happy about actually but really didn't say much other than throw a DVD at me and come see him If anything changes. My GP booked me In Feb for my third MRI. But what do I wanna ask my nureo on Monday? Pertaining to any drugs/CCSVI(steroids which my GP mentioned once) Wanna have my Ducks In order when I show up. Im 39 And Live In Edmonton Alberta Canada Thanks D Sorry If Im Vague not a great typer .

You will find that every member here has his own unique set of recommendations. I suggest that you start with a thorough physical exam, including requesting a blood test for a complete endocrine evaluation. (This should check your insulin level, cortisol, vitamin D, thyroid hormones, etc.)

In the meantime, I suggest you examine your diet, specifically reducing sugars and starches (carbohydrates).

Also, exercise as much as you can.

Ask your neurologist if you can try these simple measures first.

I see no reason to jump into medications (I know many here disagree with me on this one.), but IF your condition worsens, you might feel the need to try them then. These are strong chemicals; they have strong side effects in themselves; I suspect that steroids eventually worsen the disease (there is an association with diabetes).

Good luck.

Thanks For the reply, I actually recently had my cortisol level checked doc said it was little low p.m but ok am I believe, In Sept I was diagnosed With hypothyroid So was kinda hoping that was my major problem, Its under control now acording to last blood test. Im kinda aware/scared to get on the meds for the reasons you mentioned He did bring them up In Jan and said Hes not gona suggest I go on them yet and only 30% chance they would stop any progression. Where my Vit D sits don't know but take it daily, prob 4-6000 units daily as my doc instructed. But Im kinda lenaing towards the Liberation treatment and what He may or may say about it. As for the Steroids My GP did say after My left leg went very week In june 08 If happens again get in here and we can do some steroids to help you out. That then was way worse than now, kinda had zero strength in it then. Exercize And Diet well not enough space here for me to make excuses D

canadianguy340 wrote:Hes not gona suggest I go on them yet and only 30% chance they would stop any progression.

That's not entirely correct. More precisely, they reduce disability progression by a relative difference of about 30% compared to placebo. For example, take these data plots for Avonex. The absolute difference for reduction of disability progression is just 13%. However, the relative difference is 37%, i.e., (34.9-21.9)/34.9*100. People still experienced disability progression, it was just slightly slower than it might have been without treatment.

Relative diffference is a blatant way the pharma companies use to make their drugs look better than the really are. Take for example a study that has 100 patients in a treatment group and 100 in a placebo group. If some drug is being tested and there was one fatality in the treatment group but 2 in the placebo group, then they are allowed to report that their drug reduces risk of fatality by 50%. However, such a drug is likely not even worth the bottle it's packaged in but now it can be marketed as reducing fatalities by an apparent 50%.

NHE

Confused Me "NHE" but guess thats why My Nuero made it simple