Should I start medication?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Should I start medication?

Postby meem » Sun Jul 24, 2016 11:47 am

Hello,
So long story short I was diagnosed with optic neuritis in April and my "possible MS" diagnosis process started. I already had an MRI in June and was told there are a few spots in my brain but it is not definitive yet that they are due to MS since I've only had one noticeable symptom and I dont have an old MRI to look back to (I'm 23 years old). My doctor gave me the option of going on medication and I dont know if I should. I feel like I'm healthy and I dont want to put my body through the treatment if I dont need to. Plus the treatment is very expensive and I'm a university student abroad (so international) which means I dont have the best health insurance to lean on to.
Has anyone here been in this situation? do you suggest I start treatment ? I know my parents would be more than happy to cover the cost if its in my best interest. Any feedback would be wonderful!

Thank you!
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Re: Should I start medication?

Postby ElliotB » Sun Jul 24, 2016 2:11 pm

As there are serious side effects with all (MS) medications, you probably should not start treatment until you get a diagnosis. In any case, without a diagnosis, it may be difficult to get a prescription for any of the MS drugs.
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Re: Should I start medication?

Postby lyndacarol » Sun Jul 24, 2016 3:00 pm

meem wrote:So long story short I was diagnosed with optic neuritis in April and my "possible MS" diagnosis process started. I already had an MRI in June and was told there are a few spots in my brain but it is not definitive yet that they are due to MS since I've only had one noticeable symptom and I dont have an old MRI to look back to (I'm 23 years old). My doctor gave me the option of going on medication and I dont know if I should. I feel like I'm healthy and I dont want to put my body through the treatment if I dont need to. Plus the treatment is very expensive and I'm a university student abroad (so international) which means I dont have the best health insurance to lean on to.
Has anyone here been in this situation? do you suggest I start treatment ? I know my parents would be more than happy to cover the cost if its in my best interest. Any feedback would be wonderful!
I am a little confused since you first posted here that you had been diagnosed with MS in April (post242437.html#p242437); and now it's possible MS.

To my knowledge, there is no specific medication for optic neuritis – although corticosteroids are sometimes used to possibly hasten a return to normal vision (Optic neuritis has been linked to vitamin D deficiency.). If you are talking about FDA-approved medication for MS, I agree with ElliottB that no accredited doctor would prescribe a powerful MS medications for someone who does not have the definite diagnosis.

"Spots on the brain" are not definitive for MS – lots of different conditions can result in MRI spots (for example: migraines, vitamin B12 deficiency,…).

My suggestion is start with a thorough physical examination, including blood tests for nutrient testing. I think it makes sense to start with a vitamin D test (the "25-hydroxy D" test) since over 1/2 of the world's population is deficient in vitamin D. (And this test is relatively inexpensive – MUCH less expensive than an MRI!!)

If you are concerned that your optic neuritis may convert to clinically definite MS, the following article may be of interest to you:

Preventive effect of vitamin D3 supplementation on conversion of optic neuritis to clinically definite multiple sclerosis: a double-blind, randomized, placebo-controlled pilot clinical trial. (2013)
http://www.ncbi.nlm.nih.gov/pubmed/23250818

"Multiple sclerosis (MS) presents with optic neuritis (ON) in 20 % of cases and 50 % of ON patients develop MS within 15 years. In this study, we evaluated the preventive effects of vitamin D3 administration on the conversion of ON to MS (primary outcome) and on the MRI lesions (secondary outcome) of ON patients with low serum 25 (OH) D levels."

By the way, ask for your own copy of any test results – it is important to have the actual numbers.
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Re: Should I start medication?

Postby meem » Sun Jul 24, 2016 7:34 pm

Hello,

Well I thought it was MS for sure and I then I went and saw two other neurologist as a second opinion since my parents weren't convinced. Both neurologists said they can't say for sure at this stage if its MS. One of them suggested medication but the other one didn't. I know it must sound confusing but I am even more confused with this whole thing since I'm still new to it. I wish I knew for sure because its driving me crazy!
I will take your recommendation and get all the test results and I dont think I will be going on any medication until it progresses (or hopefully it doesnt). After my posts a did more reading about the possible medications I could go on and I dont think I want to at this stage. However, there are medications for Clinically Isolated Syndrome which is my current diagnosis and it is approved here in Canada so I know the doctor isnt just suggesting medication for the hell of it. The medication is to help delay the second clinical event of MS but it only works for about 30% of people so I dont really think its worth it.
Oh I also did take oral steroids for my eye for three days. I'm not sure if it helped much to be honest because the vision is still blurry.

Thank you for the article I found it very helpful :)
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Re: Should I start medication?

Postby NHE » Mon Jul 25, 2016 12:15 am

meem wrote:However, there are medications for Clinically Isolated Syndrome which is my current diagnosis and it is approved here in Canada so I know the doctor isnt just suggesting medication for the hell of it. The medication is to help delay the second clinical event of MS but it only works for about 30% of people so I dont really think its worth it.


Which med is that?

By the way, here's something that your neurologist and the pharmas probably won't tell you.

Pierrot-Deseilligny et al. 2012 reported that every 10 nmol/L increase in 25-OH-D level, up to 110 nmol/L, was associated with a reduction in the relapse incidence rate of 13.7%.

http://www.ncbi.nlm.nih.gov/pubmed/22783368

A mere 30 nmol/L increase in 25-hydroxy vitamin D3 puts it in the efficacy range of interferon beta1a with a 41% reduction in relapses. The side effects are nonexistent and the cost is spit in a hurricane in comparison.


Note: 110 nmol/L = 44.1 ng/mL. Divide by 2.496 to convert nmol/L to ng/mL.
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Re: Should I start medication?

Postby malrd » Tue Jul 26, 2016 10:03 pm

Several medications are now approved by the FDA for CIS: Avonex, Betaseron, Copaxone, Extavia, Glatopa

These were my options when I carried the CIS diagnosis

http://www.nationalmssociety.org/What-i ... drome-(CIS)
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Re: Should I start medication?

Postby NHE » Wed Jul 27, 2016 12:06 am

malrd wrote:Several medications are now approved by the FDA for CIS: Avonex, Betaseron, Copaxone, Extavia, Glatopa

These were my options when I carried the CIS diagnosis

http://www.nationalmssociety.org/What-i ... drome-(CIS)

Thanks for the clarification. After being on Avonex for 10 years, I would reluctant to recommend it to someone with CIS.
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Re: Should I start medication?

Postby vesta » Thu Jul 28, 2016 8:49 am

Greetings:
I believe one should avoid the MS diagnosis. It is of little use and will do great harm if one wants a Medical Insurance Company to pay for the CCSVI Venoplasty procedure. Dr. Ebers' research doesn't encourage DMD's either.
I think one should ask to be diagnosed with a Neurological disorder of unknown origin. Forget the MS (Anyway, that wouldn’t be a false statement, for the Neurology profession, the origins of the MS ARE unknown.)
The following quote comes from the May 23, 2014 blog post “Vitamin D, Veins, and the Epstein Barr Virus” from my site MS Cure Enigmas.net www.mscureenigmas.net/

QHOTE "On March 21, 2013 it was announced that Professor George C. Ebers, MD, of University of Oxford in London, had been chosen to receive the National MS Society/American Academy of Neurology’s 2013 John Dystel Prize for Multiple Sclerosis… The Neurology Community was less pleased with Dr. Ebers when on 17 October 2013 he gave a lecture titled “Critical Review of outcomes used in MS clinical trials” which was posted on You Tube November 4, 2013 by the European Medicines Agency… www.youtube.com/watch?v=OqY-_K1fYJY

Dr. Ebers basically said that current MS medications do NOT prevent descent into Progressive MS disability. See my blog (MS Drug/MRI Fallacy January 5, 2014) DMD’s treat the inflammation of the early RRMS. Once the Progressive stage sets in, they don’t work and decline sets in. Apparently the brain atrophies as do the veins draining the brain. It has been demonstrated that blood transit time in MS patients is one half that of normals. The question is one of perfusion i.e. blood flow, volume and mean transit time. ALL brain fluids contribute to adequate blood flow.

Dr. Ebers has engaged in debates denouncing (politely) the failure of Neurologists to face facts about DMD efficacy, arguing that the CCSVI controversy had revealed to what extent MS patients don’t trust their Doctors. If one obediently follows standard therapy only to finish in a wheelchair, by which time the CCSVI option and/or the “nourish the grey matter” option are less viable, one will have made a mistake. I believe current research delays owing to ideology and vested interests border on criminal."END OF QUOTE

Best regards, Vesta
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