To Treat, or not to Treat !?!?

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To Treat, or not to Treat !?!?

Postby shoetree » Tue Jan 04, 2011 3:34 pm

I have a dilemma like many here in this forum.
I'm a 30 year old male diagnosed as CIS = Clinically Isolated Syndrome.
An expert at the MS Clinic in London Ontario told me that I am at a 50/50 chance of developing MS. My second MRI did not show any new lesions, although one had doubled in size from my Spine. There was one less in my cranial. I have had a lumbar puncture done which came negative.

I have had a numb left hand which is now mostly numb throughout the fingertips since May '10. I have had an attack where I went numb from my waist down which lasted for 2-3 weeks and fortunately went away. The doctor at the MS Clinic in London concluded that both symptoms ;hand and legs are both of the same attack.

I have spoken with 5 neurologist in a span of 6 months and everyone of them highly recommend I start an Interferon.
I've done a lot of research regarding these drugs and still cannot come to a conclusion. I'm worried that the negative posts I have read are by those who are well advanced in the disease which usually doesn't benefit or work as well.

I know, there aren't any guarantees, I'm just clueless and don't want to make the wrong decision.
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Postby LoveActually » Wed Jan 05, 2011 1:07 pm

I was on Copaxone for 8 months until my diagnosis changed to NMO. NMO is not treated the same way MS is thus the reason I stopped Copaxone. Now my neuro is thinking it's possible MS again. Personally, I would not start the meds again if I got (another) positive MS diagnosis. I'm not convinced that they're worth it.

I can only speak from my experience but after quitting Copaxone, I felt so much better. I'm sure some of that was mental. Knowing that I no longer had to inject every morning was great and there was no longer that daily reminder of my illness.

This is definitely a decision that you'll have to make on your own and it's not an easy one. Just do your research and see what the best option is for you.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby DavidR » Wed Jan 05, 2011 8:03 pm

Sometimes it depends on the philosophy of the doctors. In Minnesota, there were some clinics that recommended I start on an Interferon after CIS and some that did not. Those in the latter category reasoned that the Interferon only works 30% of the time, i.e. statistically reduces relapses in large groups of people by 30%, is expensive and comes with unpleasant side effects, so it would be more effective to wait and see if there is a recurrence. I took that advice and instead started Minocycline (100 m.g. b.i.d.), which should not be too difficult to get from a neurologist in Canada, and Vitamin D (1500 IU's/day plus yearly blood test to make sure I was in proper range.) However, despite a positive MRI, I also had several tests come out negative, e.g. evoked potential eye test and the spinal fluid test. Each case is unique and your case may make more sense for Interferon at an earlier stage.
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Postby mrbarlow » Thu Jan 06, 2011 11:38 am

Hi

I am in the same boat as you having been diagnosed with CIS in November 10 following an acute bout of Optic neuritis. Prior to this some sub clinical mild symptoms - tingling in extremities and perhaps some fatigue. Since treatment eye 95% improved. I still get tingling but managable.

FWIW - my Neuro said the other day that from his observational experience the earlier the start with interferon the lower the chance of conversion. The 30% is the average but starting immediately without delay might lift that to 50%. Also earlier start means later conversion.

My advice would be, on the balance of probabilities start now. You can always stop if you want to.

Otherwise make sure you sort out all the dietary and supplement stuff now.

Good luck.
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Postby shoetree » Thu Jan 06, 2011 5:48 pm

re: LoveActually

What is NMO? Also was the cost of the medicine a financial burden on you? I'm fortunate that I have insurance. Also, my neurologist has co-pay with the drug rebif.

re: DavidR

I appreciate your response. I will look into minocycline. I will definitely bring this to my neuro's attention. I am presently taking 1500IU/daily vitaminD. I'm also doing the tanning salon once every 8 days, 5-8 mins.

re: mbarlow

I'm working on having a more disciplined diet. It's not that hard really. My diet already consists of fruit, veggies, fibre and fish. I may have to sacrifice my hunger toward spicy food, but all in all I eat very healthy. Not smoking, drinking, and going to the gym on a regular basis has certainly aided me. Wish you all the best
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Postby mrbarlow » Fri Jan 07, 2011 2:27 am

Shoetree

Have you checked whether the tanning salon tubes emit UVB. If they are only UVA you are wasting your time and money going to the salon as as far as I am aware the skin does not synthesis Vitamin D from UVA.

My advice is to find one that has UVB and do 10-15 minutes as this should generate at least 10,000iu across the whole body.
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Postby AlmostClever » Fri Jan 07, 2011 3:43 am

shoetree wrote:re: LoveActually

What is NMO? Also was the cost of the medicine a financial burden on you? I'm fortunate that I have insurance. Also, my neurologist has co-pay with the drug rebif.



NMO is also known as Devic's Disease - very rare!

Rebif - be certain to get your blood work done regularly as your body can develop neutralizing antibodies against this drug! This drug is nice because of fewer injections and smaller needle size (and of course, more expensive than Copaxone!)

A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby LR1234 » Fri Jan 07, 2011 4:59 am

I looked into UVB/UVA rays. They treat psoriasis with UVB rays at many centres. I am trying to see if they will treat me too.
There is a very strict limit to how much UVB rays a person can have in a lifetime.
I was going to buy a hand held UVB ray machine but after speaking to the dr's you really want to be monitored carefully.
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Postby mrbarlow » Fri Jan 07, 2011 5:41 am

LR1234 wrote:I looked into UVB/UVA rays. They treat psoriasis with UVB rays at many centres. I am trying to see if they will treat me too.
There is a very strict limit to how much UVB rays a person can have in a lifetime.
I was going to buy a hand held UVB ray machine but after speaking to the dr's you really want to be monitored carefully.



Its the same UVB as when you step out into the sun. I assume Shoetree was going to the salon in the winter months to get what he wouldn't get at a high latitude.
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Postby LR1234 » Fri Jan 07, 2011 7:15 am

Hey Mr Barlow, I wasn't commented on your post!I was just letting you all know where I have got to in my search for UVB rays.
You are right about going to the normal salon though, it is UVA rays so won't produce Vit D
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Postby DavidR » Fri Jan 07, 2011 7:36 am

I would skip the tanning salon and the sun. When I first became concerned with Vit D, I did a little experiment. First I had my Vit D level checked by taking a blood test. Then I sat outside in the sun, during June and July, for about 20-30 min a day around 12:00 p.m. - 1:00 p.m. Then I tested by blood level again and found it had only moved very little. After that, I started taking Vit D Supplements and did another blood test for my Vit level again a few months later. This time it had moved significantly. Now I don't go out in the sun for purpose of Vit D, but I continue taking the supplements and test my level 1x/year. It has stayed constant at the level I want. I haven't seen any suggestion that there is any special benefit to getting Vit D from the sun rather than supplements, but I have seen literature suggesting that there can be harm or risk to your skin from the sun and the tanning salon.
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Postby mrbarlow » Fri Jan 07, 2011 8:34 am

DavidR wrote:I would skip the tanning salon and the sun. When I first became concerned with Vit D, I did a little experiment. First I had my Vit D level checked by taking a blood test. Then I sat outside in the sun, during June and July, for about 20-30 min a day around 12:00 p.m. - 1:00 p.m. Then I tested by blood level again and found it had only moved very little. After that, I started taking Vit D Supplements and did another blood test for my Vit level again a few months later. This time it had moved significantly. Now I don't go out in the sun for purpose of Vit D, but I continue taking the supplements and test my level 1x/year. It has stayed constant at the level I want. I haven't seen any suggestion that there is any special benefit to getting Vit D from the sun rather than supplements, but I have seen literature suggesting that there can be harm or risk to your skin from the sun and the tanning salon.


Some people do not efficiently absorb dietary Vitamin D from what I have read therefore some sun synthesised D3 is useful.

I would hedge bets - 20-30 minutes a day in moderate sunshine plus supplements. Getting out in the sun is also good for general health and well being.
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Postby jtjdmj » Wed Jan 12, 2011 5:16 pm

Shoetree,

I'm new here so forgive me my ignorance, but here goes...I've been so "lucky" as none of my meds in my 13 years+ of my MS, including Avonnex originally and Beta Seron now have ever caused me side effects, I truly believe you can't not take something if the "possible" side effects could be "bad," YOU may not have any of the side effects. IF you trust your Dr., do whatever they suggest and do so you don't/won't get worse, even if it is the interferons.

Jaime
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