Hello, Dealing With MS for over 20 Years

[JPH]

From northern lower Michigan. Have been on Avonex weekly injections since 1996. Have been taking over the counter D3 10,000ml & B complex vitamins for the last couple of years with no new exerbations since. Just starting to review this website and so far have found it enlightening! Good to be part of this community! Joel

[lyndacarol]

From northern lower Michigan. Have been on Avonex weekly injections since 1996. Have been taking over the counter D3 10,000ml & B complex vitamins for the last couple of years with no new exerbations since. Just starting to review this website and so far have found it enlightening! Good to be part of this community! Joel

Welcome to this is MS, Joel (JPH). We are glad you found us.

Since you are from lower Michigan, you are very wise to be concerned about your vitamin D3. I wonder if your D3 level was tested before you started supplements. If so, could you share your actual test result numbers?

Also, vitamin B12 testing should have been done before taking a vitamin B complex. The folic acid found in most vitamin B complex can mask a B12 deficiency (and allow nerve damage to accumulate and become permanent). "Folate" is preferable to "folic acid."

I hope your GP has monitored these levels – deficiencies can cause neurological symptoms. Having the MS diagnosis does not preclude other conditions at the same time.

[ElliotB]

Hi JPH, and welcome. Just curious, if you don't mind me asking... how old are you and how have the last 20+ years been for you with regard to your MS?

[JPH]

Hi JPH, and welcome. Just curious, if you don't mind me asking... how old are you and how have the last 20+ years been for you with regard to your MS?

I will be lighting 60 candles on my BD cake in just a few days. I was officially diagnosed with MS back in 1995. Had issues many years before that with numbness and weakness in my arms and legs. Had a bad bout optic neuritis in my left eye in 95 which led to MRI and spinal tap leading to diagnosis. Have dealt with total blindness in Lt eye which has improved to a very cloudy, colorless image. Suffer with constant numbness and tingling in Rt leg from about halfway above the knee down to my toes. Weakness there as well and it always feels like I am walking on stones with that foot! Walking is a GOOD thing though!! There are a few days every week where I have blurry double\triple vision as well as fatigue and headache. I wear eye glasses for near sightedness and stigmatism that I can just take off on those goofy vision days. I actually see better without the glasses. Had to have emergency back surgery about 8 years ago from an injury to my lumbar area. Had a titanium cage installed which has added to the numbness which is now in my upper left leg as well. During my hospitalization for the back thing, my neurologist came in to check on me and put me on a darn steroid drip. Had to lay on my back for 8 days and about went nuts. I not only could tell the nurse how many little holes were in the ceiling, but I had time to give them all names as well! Had to stay in hosp for an additional two weeks for PT and had to learn to walk again. I did have my D3 checked at the VA clinic and it was very low. Can't remember the numbers but I was put on a one time mega dose and started taking the 10,000 mg on my own perogitive ever since. I was told that I was one of the first cases to be on Avonex when it first hit the market. Still use it even after my Neuro has tried several times over the years to get me to try something else. I can be stubborn at times but I already feel like a human guinia pig and do not want to subject my body to any more chemicals if I can help it! My "remedy" for the Avonex side effects has been to take an 800 mg dose of Ibuprophin just before the injection. Do the shot late in the afternoon and go to bed by 8 PM. Not too many issues and only need one IBU a week. I could make this into a novel so I will stop here.

[ElliotB]

You seem to be doing reasonably well. Aside from the Avonex, to what do you attribute your success?

[JPH]

To be quite honest, God only knows! Doing a lot of reading here, there seems to be quite a bit of good information from some very knowledgeable posters! I admit that I am also having some flash backs to my days in anatomy & physiology\micro biology classes in college some 35 years ago! Some of it is actually coming back to me! Much more study ahead!