The Fear that MS Might Get the Upper Hand

I really like this...yeah fear can definitely make you more aware of what is important in life.  It can also make you crazy too.  lol  I am trying to deal with it the best way I know how but often I do feel woefully inadequate and powerless.  I want to thank you for your comment...as always.  You always make me think.

wow...this is really something!  I don't think I realized that you also had a child on the spectrum.  You will have to hook me up with these other parents who have both elements in their lives.  I do think there must be some connection with all this.  And to boot my mother has schizophrenia.  I think all these conditions are related and my theory is that it has something to do with that leaky gut hypothesis.  Too many coincidences. 

I have not been by to see your new blog but wanted you to know that I want to do that very soon.

Thank you so much for your comment...I am just amazed at what a small world it really is.

My biological father was schizophrenic.  And I have MS.  I wonder if there is really a connection.  What is also interesting is when I was 15 I was hospitalized with encephayltis, but I came out all right. My oldest son was also hospitalized with encephayltis when he was 5, but he is now disabled.  He is 11 now.  I guess I have a "mild" form of MS. My other children are 8 and 6.  One of the hardest thing for me is not having the energy to spend time doing things with them. 

Hey there...

I am intrigued by your comment...yes it does seem like there is some sort of connection with all these various neurological disorders.  Someone should do a research study of all this.  I do thank you for stopping by to share your experience with us here.  Hope you have had a wonderful Thanksgiving.

Yes..I won't lie...it is very hard to raise kids and have this disease.  Most days I don't know if I am coming or going.  I am thankful to have the supports I do.  And I am also thankful that my MS has not wiped me out yet.  Thank you so much for coming by to comment.  I hope you come by to read and share again.

So true.  I didn't understand this before I had MS.  I didn't even really know what MS was.  It has been one crazy year for sure.  Thank you Larry for coming by to read and to comment.  I hope your holiday has been peaceful. 

Along the lines of this thread, may I state that fear seems to equate to stress. Both of these seem to have a great deal with triggering MS to start and later with bringing on exaserbations. There was a study done that I have heard about from a pharmacist in Florida. He said that stress was linked to eating up the endorphens in ones body.  My husband had his first MS symptoms directly after a month of stressing about a house we just purchased and 4 hurricanes that came through Florida. We were in Calif. and he did not know how the house was doing. After this horrible month of stress he came down with MS. 

If you have read my profile page and know my husbands story, he started a drug that tricks your body into producing a lot of endorphens and his symptoms basically disapeared.  I am on a chat site regarding this drug with over 5500 people signed in, and I have noticed through listening to other experiences that even when someone with MS is doing great, if they have a tremendously stressfull or fearful time (devorce, kids get sick, job in jeperty etc), even with this drug they can have relapces.

All my best, Aletha

Hey Aletha...

Nice to meet you.  Yes stress can make any illness worse.  I hear ya!  Thank you for sharing your thoughts here with us.

Hey Georgie

So nice to see you.  I would like to hear more about your disorder.  Quite frankly I have never heard of it.  I think illness is something we will all struggle with in one form or another.  In a way maybe I am lucky to know what my illness is (or at least one of them) early on. 

Hope you have had a great Thanksgiving and thank you for stopping by.

Sure.

It's an inherited neurological disorder. People who have this disorder slowly lose the use of their feet/legs and hands/arms as nerves to the extremities degenerate and the muscles become extremely weakened due to loss of nerve stimulation.

That is the medical definition.

Personal definition is this. I have some moderate muscle weakness in my legs and hands, and a couple of dead spots in a few fingers. Any kind of action involving the hands is usually an adventure. I have severe problems in doing things that require manual dexterity (i.e. buttoning shirts). As for writing, I have to take frequent breaks in order to stave off hand fatigue.

I try to write with a pen as little as possible now, so I do a lot of keyboarding. I can still type, but the speed in which I do it has dropped dramatically.

Walking isn't a problem, nor is driving a problem, yet. I'm sure it will get to the point where I will have to get my car modified in order to use it. I try to do a walk every weekend so that my leg muscles don't totally go to pot. The neuropathy in the legs is moderate. Neuropathy is like a part of your body going permanently asleep. There's a perpetual numbness that never goes away.

It's not fatal, but it will probably force me into early retirement from work, as the hands get progressively worse and I completely lose my ability to grip things. My ability to grip is bad right now, but I manage to modify so as to better handle the day to day activities.

I had no idea!  This does sound so much like MS.  Are there any treatments for this?  How were you diagnosed? 

I am learning something new everyday by writing on this site.  It is a small world and there are so many people dealing with neurological issues that otherwise I would have no idea about.

Thanks so much for sharing your story here. 

The only realistic treatment available is physical therapy. I have medical putty to use for the hands to help keep them functioning at the status quo (hopefully), and I have muscle stretching exercises for the legs.

I had my finally diagnose in January, although I had an inkling something was wrong for the past couple of years, as my hand were getting worse and the dexterity was dropping like a stone. I initially went to my regular doctor, who after showing him my hands (which were already showing signs of muscle atrophy), refered me to a neurologist.

He did his thing, complete with that electric current test that they do with the needle, then after reading the results, he says "something doesn't look right". I then get refered to a very good neurologist based out of UCONN who works at the ALS clinic in my area.

The rest as they say, is history. It did initially knock me for a loop (very bad black humor came out of me for a few weeks) but eventually I accepted it, and simply try to make the best of it.

I do have problems in the morning when I get out of bed. Seems it takes forever and a day to get the legs functioning again, but we make do with what we got.

I will say this though, this is the only place I feel comfortable in talking about it. Only my friends, family and immediate co-workers really know what I got.

I do thank you for giving me this little nudge to talk about it.