Think I might be on to something...

[michelleric]

Well, I had an MRI today of the optic nerves and a repeat MRI/MRA of the brain. I am seeing a new neurologist this Monday who specialized in MS. HOWEVER, I think I have a found a big clue in the big picture. For the last 4-6 weeks, I have had numbness/tingling in my left arm, numb lips, part of my face numb, HORRIBLE feet cramps and calf cramps, dizzy, lightheaded, and a diagnosis of Optic Neuritis. All these things are still going on, and even seems to be intensifying the past few days. HERE is the clue: I have been on Coumadin(blood thinner) for the last 2 years for a history of blood clots. I was told I need to stay on it for life due to my blood disorders. The last month, my blood is way too thin. Almost dangerously so...They continue to lower the dosage to try to thicken up my blood. So far, no luck. I went online today, and looked up Coumadin side effects. I read it and every symtom I have is there. Poor vision, numbness, tingling, dizzy, slurred speech etc. I called the vascular doc and nurse said that is very unlikely due to if I was allergic to the coumadin, this would have happened 2 years ago, not now. I dont buy it, I told her I want to speak to the doc. I don't see why you couldn't become allergic to a medicine during the course you are on it.
Anyway, that is it. I really do feel (and want) that to be my problem. Any thoughts?
Thanks,Michelle

[Quixotic1]

I hate to be a wet blanket, but I think you misundertood the list of side effects of Coumadin.  When a drug company lists side effects they must list EVERYTHING - literally EVERYTHING that the test subjects report while on the studies to get it approved.  Thus, you might see things that had nothing to do with the med itself.  That's why reading the PDR can be so frightening and misleading.

I did a google on the its side effects.  The first site listed was drugs dit com and there list was totally misleading.  They say that Coumadin has no common side effects, which is true and then they say to watch out for these serious effects.  That is an unclear sentence.  But, what it means is that they have listed a group of serious side effects - not necessarily related to coumadin - but that all people should look out for on any drug.  Then they list a bunch of nasty things.

The real danger to that med is severe bleeding.  This is not a "side" effect, but the actual therapuetic effect of the drug.  

Coumadin has very few side effects except allergy to it.  The things you listed I don't think have anything to do with the Coumadin.  They could be things that would happen if you bled from the Coumadin into your brain, but they would not be actual side effects.

Does this make sense?

Quix

[michelleric]

Quix,
Thanks for the reply and yes, u make sense. I spoke with a friend tonight, who is a doctor, and she pretty much confirmed what u just said. I really felt so happy, like this was the answer, with a pretty quick fix. Guess I will see what the neurologist says on Monday, but I still hope it all has to do with my high INR and coumadin. I realize that probably isnt the case, but one can hope, right? I pick up my MRI tomorrow and an anxious about the findings, if any. I am hoping it gives some insight to my Optic Neuritis.

One more ?, if u dont mind. I exercise about 4 times a week, and am starting to have some problems toward the middle of my workout. I start feeling really light=headed, and I have to stop early. My vision seems to worsen and I just dont feel right, dizzy. I go home, take a shower and then need to lay down. As the day progressed I start to feel better, but dont know if the exercise has to do with anything, or I just am going crazy. I almost think I am losing it these days, cant remember much and just feel "out of it". Like I am on a drug or something. Really bizarre.
THanks for listening,
Michelle

[Quixotic1]

As you exercise you generate heat from the work of your muscles and gradually your core temp rises.  It sounds to me like you are over-exercising for the current condition of your illness.  There are two things to try.  The first is to lessen the intensity of your workout.  IF this is MS, over-exercising can actually be detrimental.  So try pulling the intensity back several notches.  Try to delay the time when the odd feeling creep in.  Once they creep in, I think your should cool down and stop.  This whole business may have to do with Heat Intolerance just as much as sitting in a hot tub.

The symptoms may include increased paresthesias, increased weakness or dizziness, or as you seem to be having, cognitive problems.

Anolther thing to try is to cool down before hand.  Take a cool shower before the workout and then exerccise at a lower intensity.  Also, all MS experts recommend strongly that you exercise wearing cooling garments.  Precooling, cooling garments and exercising in front of a fan are all things that may allow a person with MS to exercise longer and more effectively.

See what combination of things allows you to still exercise and not be made ill.  If theis is MS, you need to walk a careful balance between maintaining fitness and causing the demyelinated nerves to malfunction, making you worse (possibly permanently).

http://www.msassociation.org/publications/cooling/

http://www.neurology.org/cgi/content/abstract/57/5/892

Remember these cautions are not just to keep you more comfortable.  There is some danger in allowing yourself to overheat.  Injured nerves can be further injured bringing on some permanent damage.

You can find cooling garments by googling    multiple sclerosis cooling garments

Quix

[michelleric]

Thank you quix for all the good information. I stopped exercising after your post, and I will ask the neurologist about it on Monday.
Thanks again,
Michelle