Starting treatment...before diagnosis?

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Starting treatment...before diagnosis?

Postby Andrea5501 » Fri Dec 09, 2016 1:21 pm

Hey there everyone, thanks for reading. I'm a 28 year old female; I've been followed by a neurologist for almost 4 years now. I have NOT been officially diagnosed with MS, but I have had textbook symptoms and family history.
3 years ago I developed optic neuritis in one eye (likely postpartum, my first child was 8 weeks old) -- this is the ONLY diagnosable MS symptom I have had in almost 4 years (June 2013). Since this event I've had only two "episodes" of numbness/burning in both hands, and a heaviness of one leg. Both of these symptoms resolved on their own within 3-4 days and haven't returned. I've had 8 MRIs of my brain and 3 of my c-spine, all negative, with the exception of one "nonspecific" lesion of brain white matter. I have had a negative lumbar puncture. I also suffer from chronic migraines, which can also cause lesions on the brain. My neurologist always pressures me to begin drug therapy because "the sooner you begin, the better" but I'm afraid to take that on without any clinical evidence that the MS diagnosis is correct. In the doc's own words, "once you get on the MS train you can't get off." Meaning that for the next 40-60 years of my life, if I'm lucky, I'll be injecting or taking pills for a disease I may not have. By the doctors own admission, if I do have MS it may be so mild a case MRI scans aren't detecting it, and the "window is already closed" for early intervention by drug therapy (since I have had no symptoms that require medical treatment in almost 4 years)

Sorry that was long.....am I being stubborn or in denial by delaying treatment? I need concrete proof of such a serious diagnosis and so far, though I accept that it's a possibility in my future, I'm not buying it for now. I'd like to save myself a few years of drug treatments and their side ffects if at all possible. Any and all feedback is greatly appreciated. Stay well, everyone
Andrea5501
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Re: Starting treatment...before diagnosis?

Postby Scott1 » Fri Dec 09, 2016 2:56 pm

Hi,

I think your view is absolutely sensible. They haven't proved their case and I am yet to hear of a medication that prevents or cures MS.

Your migraines are an interesting clue that you may not vasodilate as well as you could. There have been arguments advanced that supplementation with B6 and B12 assist with migranes and there are a number of references that augmentation with L-arginine helps dilate the blood vessels. Foods such as watermelon, beetroot and dark green leafy vegetables assist the same process.

Your doctor needs a basis for a decision. Have you been tested for infections, vitamin deficiencies, fasting amino acid levels, uric acid levels or diseases that have similar symptoms to MS?

If your doctor thinks there is an MS train then you are already on it or not on it. I have no idea what early intervention therapy that comes from a drug company your doctor is thinking of.

No matter what you have, always deal with facts, don't guess. That should apply to your medical advisors as well.

Regards,
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Scott1
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Re: Starting treatment...before diagnosis?

Postby Paddi » Tue Dec 27, 2016 5:47 pm

OMG Yes

I am fast beginning to hate doctors - ok stay calm - if you have no residual damage from any of the 3 episodes why on earth would
you put drugs in your system. Wait. In your case you seem to be doing ok and if there's no proof you have ms? Also if your attacks are
mild at the moment they maybe preferable to side effects some of which are even impossible to bare.
dont get talked in to anything trust your instincts - my advice at the moment would be healthy diet and exercise and dont get too hot, stressed or tired

Good luck
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