Neuro visit

[Csativa]

Saw my neurologist yesterday.  Had a nerve conduction study done. Good news, my right side, so-to-speak is pretty much unaffected.  Left side is another story.  There is a significant degree of Radiculopathy affecting my ability to stand and walk for even brief periods of time and causing pain as well.  Radiculopathy is basically a cluster of symptoms, the cause of which is where at or near the spine, where the root of the nerve is.  Its a type of neuropathy, meaning that affected nerves do not work as they normally would. In my case, I have several neurofibromas that are comprimizing the L3 nerve and possibly S1. This is all in addition to the MS which also affect my ability to stand, walk, etc. Surgery is the only option at this point.  Need to find a Neurosurgeon who has experience with neurofibromatosis.  The MS clinic is looking at Boston and Hopkins.

On a more positive note, I get to start Copaxone in a few days.  When I reviewed my symptoms I was told that there are severl drugs that can help with symptoms like stress/anxiety, walking, etc.  But she held back giving me anything because I take so many meds now.  Well she did give me some detrol to help with uinary problems. She wants to wait and see how I do with the Copaxone before adding any other drug.  Good logic.

I guess I need to be more patient and stop thinking that the MS is going to get me soon!  It's definately irrational thought, but when you are on the receiving end of dealing with so much its not always easy.to be patient.

Frank

[Csativa]

Perhaps in trying to vanquish the irrational, we should also keep in mind, and I kind of pick this up from reading what people write, is that amidst all our pain and suffering, we can still experience the sublime!  The laugh of our children, a warm embrace of our partner, Pachabel's Cannon.  Perhaps this is one thing that keeps us all going.

[Sparkysarah]

Not many people havve talked about their fears (whether irrational or not!).  When I am having a bad day and everything is tingling or I am experiencing new symptoms I panic and think things are progressing quickly and then the "how much quality time is ahead and will I end up in in wheelchair" thoughts take over.

I normally get them under control pretty quickly by taking the advice I have given other people...but I am sure that for many people there is an underlying fear of what is ahead. So thank you for sharing your concerns and thank you as always to Lulu for her sensible rational reminder about research and advances in treatment for MS.

Also I had not heard of Radiculothapy so thanks for telling us about it, Hope you manage to find a good neurosurgeon and good luck with the Copaxone and let us know how you get on with it.

Cheers for now

Sarah ;)

[Lulu54]

We all need those gentle reminders.  If there were a predictable course to all of this I think coping would be much simpler.  But, alas, we are just along for the ride.  Really the DMDs give us such an improved outlook.  

We can be so busy worrying about the MS and step off the curb and get run over by some over bus.  

This is a disease of good days and bad days.  Here's hoping we all have more good than bad.

-Lulu

[Csativa]

Thanks Lulu,

There are many benefits to this site, one of which is people throwing stones into the cogs of "irrational or misinformed" thoughts.  One one hand, I know that the MS probably wont kill me, unless of course I try walking along the rim of high places.  On the other hand, it is all to easy at times to get wrapped up in the "death, doom, and destruction" mode of thinking.  It's nice to hear/feel a gentle "nudge" at times that says, wait a minute!  Think.

[Lulu54]

It's good to hear they are working on answers for you - we tend to want to lump everything under the label MS and forget that we can have other problems as well.

Your choice to start Copaxone is a good one - not that you have to do this particular drug but that you are doing something.  

Now for my pep talk - people with RRMS have a much better prognosis than twenty years ago.  The image you have of MS patients being in wheelchairs and dependent on others is not necessarily accurate.

There was a release of the results of a long-term study of Copaxone this winter.  The results showed that after 18 years, 80% of all people on copaxone were still walking without an assistive device (cane, walker, wheelchair).

The number of relapses was significantly decreased and the average EDSS rating held stable or improved for over 50% of the people in the study.  

I remind myself of these statistics often - expecially when I am weary of the daily injections.  It could be so much worse.

We know that people with MS now live as long as non-MS - it used to be our life span would be 7 years shorter, but that is no longer true.

So much has changed and I try to remain optimistic about the future.  I hope you can do the same.

I used to say that MS won't kill us, it can just make our life hellish.  And the results of this study make that hell sound a little less intense.  

Now if only they would do some research and find ways to treat SPMS and PPMS.  That would really make me happy.

be well,
Lulu