This Is MS Multiple Sclerosis Knowledge & Support Community

Research is showing that early use of DMTs can materially change the long-term development curve of MS.
e.g.
"The time of treatment is critically important in limiting the progression of the multifaceted pathways of this disease."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6277889
Also
https://jamanetwork.com/journals/jamane ... ct/2783261
https://pubmed.ncbi.nlm.nih.gov/34387513/

Imho the McDonald diagnosis criteria seem over-conservative, and lesions appear a lagging indicator of MS activity. Many stories of people being diagnosed years after symptoms started. (We need the doctors to consider us not as we appear now, but as we may be in 20-30 years time.)

I have VEP P100 latencies 117 and 113, massive fatigue, some bowel leakage, etc, and a sibling with RRMS. But my MRIs 5-6M ago had no visible lesions - so no diagnosis.

Where can I buy some DMTs without prescription?

I understand there will always be some risk of unexpected side effects but this is a *balance of risk/reward* decision. The risk/reward for me of going on DMTs now is very positive; massive long-term benefit of lower MS development if I am MS, vs side effects very limited. I can always come off the DMTs later if find I don’t have MS.

(I'd ideally go for ocrelizumab - reported very low side effects, and NICE guidance here. https://www.nice.org.uk/guidance/ta585/ ... discussion )

Thanks for any thoughts.

Best wishes

Hi,
I really wouldn't follow the path you're thinking about. In simple terms, DMTs could be broken down into a couple of categories. At the highest level, it would be those that suppress the immune system and those that don't. If we just concentrated on those that suppress the immune system, some are repurposed from other therapeutic uses and some are focussed just on MS. Many target lymphocytes, working either by trapping them in the lymphatic system or by disabling the ones that display certain markers- these can T cells or B cells or both. Nearly all of these can have side effects. Some can stop the normal activity of DNA and some can lead to an irreversible pathway to death if incorrectly administered. You need a very highly skilled set of advisors who are aware of the mechanism of action of the drug. Additionally, there can be contraindications where other things you may take can combine with the drug and kill you. None of them are lollies. They are very potent. The criticism of most medications is none of them are regarded as a cure. Some show some evidence of slowing the rate of progression and that is why they have been approved for use. Many are new and lack both long term data and extensive follow up to support their continued use. None of them are approved on the basis that the cause of MS is known. It is still a topic of considerable speculation.
You obviously have problems. Either your doctors are skilled in MS or they are not. If they are, then they should also be looking for whatever else may be causing your issues. You are better off constantly asking what may be causing your problems and if you draw a blank, getting a referral elsewhere. Concluding you have MS, without evidence, is a journey down a rabbit hole.
Your entire lifestyle, your diet, your approach to physical fitness all need to be looked at. Unfortunately, one medical provider can't cover all those aspects so you will need to drive your own bus. Don't take the bus into a war zone by using DMTs without a proper reference.
Regards,

JohnC777 wrote: ↑Sun Apr 10, 2022 9:04 am Where can I buy some DMTs without prescription?

You can’t and any black market source would be unsafe.

It’s best to get a diagnosis. Who knows, you might not even have MS, but a treatable condition.

I would also try to improve your overall health through diet and exercise. For diet, there are lots of suggestions on this site. I happen to like the advice of Dr. Robert Lustig (search on YouTube) and Dr. Joel Fuhrman (see viewtopic.php?t=28810). For exercise, you don’t need to go to extremes. The key is to do what you enjoy, e.g., hiking, bicycling, etc. Even something as simple as a walk every day would be good. If you’ve been inactive for a while, then start with short 30 min walks and then continue with longer walks.

You can also try some supplements. For example, here are a few I take.

Fish oil
Magnesium glycinate
Methyl B12
Longvida curcumin
Na-R-Lipoate
Ginkgo
Vitamin K2 MK7

With respect to Na-R-Lipoate, it’s a more absorbable form of Lipoic Acid which was found to reduce brain atrophy better than Ocrevus.

Reduction in atrophy:
Lipoic acid, 600mg/day = 68%
Ocrevus = 18%

https://www.medicalnewstoday.com/articles/318225

Many thanks both Scott1 and NHE; appreciate very much you both taking the time for your thoughtful replies.

This an interesting blog today by a leading UK MS academic on how some of his patients are biohacking with off-label meds; https://gavingiovannoni.substack.com/p/ ... beware?s=r

Best wishes

JohnC777 wrote: ↑Mon Apr 11, 2022 1:45 am This an interesting blog today by a leading UK MS academic on how some of his patients are biohacking with off-label meds; https://gavingiovannoni.substack.com/p/ ... beware?s=r

Best wishes

Re: Biohacking. I’ve tried many different supplements, some of them didn’t go so well. Example: nicotinamide riboside (also known as niogen). Several journal articles provided evidence that it increases the number of mitochondria in cells. However, even though I tried 2 or 3 different brands, it only gave me chest pains. I had to stop taking it.

viewtopic.php?p=238494#p238494

NHE thanks for supplement list. I come back to ThisisMS every now and then. Your posts are always super informative...

MS can be controlled safely through diet, supplements and exercise. Safely is the key. Many people are having great successes without drugs and generally getting very, very good, often better results than DMDs. While DMDs work for some, they don't seem to work for all. The 'some' numbers are generally not all that impressive. Yet, diets, supplements and exercise have an extremely high success rate. Eliminating stress is also a key factor in MS health. Lots of info on the web.

Taking DMDs on your own can be quite risky for a variety of reasons. You should not take them on your own and you would likely not be able to buy them without a prescription anyway. Extremely unlikely. They are very powerful and can be dangerous as well and really need doctor supervision. Plus, since it appears you are undiagnosed at this time, it is probably not a good idea to take a prescription DMD at this time anyway.