Am not on medication but am having an exacerbation - I don't know what to do

[squinun]

Hi this is my first question on this forum as I have just registered.

I was diagnosed in 2004 after complete numbness and weakness throughout the left side of my body. All tests of MRI, visual and evoked potentials, and

lumbar puncture ruled out other conditions. I was hospitalised and put on IVMP and tapered using oral prednisone. Since 2004, I have had one incident of

footdrop, and maybe 2-3 incidents of sensatory feelings (hot/cold sensations). However for the last 2 years I have been having urinay hesitancy problems

and have been prescribed flotral but it doesnt really do much. I have not been on any medications as such and have at most used prednisone on my own when

the footdrop happened. However I used a bit too much prednisone for a bit too long (60mg for 1 and a half months then tapered - total 3 months of

prednisone). My neuro said I was silly to do that and offered me one of the MS drugs but did not offer any other alternatives except yoga and exercise.

(btw - side effects of the prednisone was a blow out of infections and an elevated blood sugar level).

In the last two weeks, my left leg has gotten weaker to the extent that I cannot lift it and I walk with an odd limp and have nearly fallen down twice.

Together with this the hug has come and is only on my left torso and causes such a burning sensation at certain times right at the bottom of my left rib

cage, making me think that my insides (kidney, maybe?) are severly inflamed. I am very apprehensive of using prednisone again cos my exacerbations have

been at far intervals, I dont justify using an MS drug/med.

I am at a loss as to what to do. At certain times of the day my leg feels 80% normal, and at other times of the SAME day it feels 20%. And this will

yo-yo throughout the day.

Does anyone know what to do when an exacerbation occurs and they are not on, or dont want to take any meds? Please, I need help with this. I do not have insurance and cannot afford the meds, even if I pay in installments.

[jensequitur]

How to relieve an exacerbation...  If you can't or won't take steroids, the best thing is sleep.  Sleep heals damaged brain cells and lets you recover.  Stay as cool as possible, and keep up your intake of the omega fats and non-saturated fats.  

Exercise and light activity are definitely recommended, as well as small easy games to keep the brain active.

Your symptoms remind me of my own problems.  I have leg weakness, sometimes to the point where I have difficulty standing.  I don't get burning, but I do get a tightness around the ribcage, right at the point you're describing.  I have lesions in the spine, one at T10, and more around T6.  Sometimes when I have problems with my back , my leg problems get worse.

[grannyhotwheels]

  Hi and welcome to our family... I'm so glad that you found us even if I don't like the reason why you had to come looking... You will find so many wonderful people here that can help in so many ways...

  Just about any question you might have someone here knows something about it...  I completely agree with Ren and her statements... There is help for the DMD's and it's the only thing that can slow your symptoms down...

  I'm don't know what type of medicare programs you have over there but here in the states just about anyone can get help... Please keep us informed and keep posting...

I'll be praying,
Carol

[rendean]

Hi and welcome to the forum!

I aqm sorry to hear of your excerbation. I see that you are in India, In the US, the standard treatment for an excerbation of kind is usually treated with a doctor directed course of IV Solu=Medrol and then a slow taper to prevent any further issues such as infections, etc.

You said you do not want to be on any meds. A disease modifying drug (DMD) is usually the standard treatment. The prednisone only makes you feel better but does not change the course of the disease and will slow the disease down.

If money is the only issue, many if not all the DMD companies offer financial assistance and if I am not mistaken, in certain circumstances free meds under a doctors supervision.

To prevent exacerbations, you must try not to get overheated as this will cause a flare or exacerbation. Stress and illness can also trigger a flare.

As much as you do not want to take the DMDs, it is your best chance of slowing down the disease and hoprfully stopping permanent disability.

Please feel free to post any further questions or concerns! And, again welcome to the forum!

Ren