-
I’m sorry for everyone’s pain and difficulties. I wish for everyone that this disease disappears much sooner than it’s been around.<div>
<div>
I know that most everyone will think this is crazy as I do myself. I first showed muscle atrophy in my right hand in 1996. I wondered why I couldn’t open the scissors I was using at the time. The following June I was DX with this terrible disease.
<div>
At this point I knew that the Drs couldn’t fix me so there was no need to sit around and dwell on the future. I needed to get busy.
I decided to take control of my life and help my family get through this. After all I needed to see my Daughter graduate from highschool. The Internet was new to me at the time. I started my research and it continues as of this writing. During my journey I have had many diseases presented to me. I may have Motor Neuron Disease aks ALS, Charcot-Marie-Tooth disease, another one that’s a mouth full, Multifocal Motor neuron with liability to pressure palsy, Progressive muscular atrophy.
Fast forward through the years, started on Rilutek 1997 among with a regiment of 52 other pills daily. This continued for 10 years. I asked for a muscle biopsy so they could look at how my muscles were deteriorating. At that time research showed that ALS patients muscles deteriorated in a particular way. The biopsy results confirmed that mine were doing the same thing. I asked for IVIG infusions knowing that they did not improve or help ALS patients but should rule out diseases that mimicked ALS. Two rounds of this years apart with 2 different neurologist. 1 in Arizona the other in San Francisco. I even had to call Bayer in Pittsburgh and get the drugs shipped directly to my home after I convinced our local Hospital to help me.
My neurologist at one time said I should get a new test they just developed for ALS. She told me about it and I told her I already had that test. She argued with me telling me it was just approved. I said I know, I was part of Dr Alan Pestronk study of his Covalent gm1 antibodies test he was developing. She didn’t believe me so I asked her to contact him and verify. She did and at my next visit she apologized.
I went home one day and told my wife I’m done with these meds. They aren’t making me feel any better while devastating our financial situation. $16,000.00 a year out of pocket expensives so I stopped. I stopped all meds as well as going to doctors.
<font color=”rgba(0, 0, 0, 0)” face=”inherit”>I have had 7 different rounds of EMGs along with the nerve conduction studies that usually done at the same time. Crazy thing is I have asked the Doctor myself for some of them. I </font>remember once<font color=”rgba(0, 0, 0, 0)” face=”inherit”> telling my Dr that this was my second round these test he said ” That’s 1 more than any patient should </font>have<font color=”rgba(0, 0, 0, 0)” face=”inherit”> to endure”. I ask my Drs as well as the Technicians that perform them, if they have ever had these and I think all have said no. I tell them they should do they understand what their patients go through. Word of advise thought don’t say right before the test ” If you don’t hurt me I won’t hurt you”, they don’t thinks it’s funny.</font>
I’m back on meds taking the 3 R’s. I have sent a copy of the alphabet to the drug manufacturers so they can see there are 25 other letters they could start the name of the next new drug with. Starting Rilutek, Radicava, and RELYVIRO all at the same time is confusing. We are faced with the fight of our life and they go and decide to only use the letter “R”! Holy heck guys think about your patients. Life is hard enough to begin with, add in this disease only use one letter. As Joe would say “Come man give me a break”!
Life continued as well as my very slow progression. Over the last 28 years I have seen 14 neurologists. 10 of them have said ALS. Most of them used the term Motor Neuron Disease I guess to soften the blow. I have been asked several times now, “How do you feel about getting all these different diagnosis from your Doctors”? I tell them it’s okay, it’s when they all agree that I’m in trouble! I was at my Daughter’s highschool graduation as well as her college Graduation!
Well I’m sorry for not sticking to my comment “fast forward”. GOD’S speed to everyone, have a blessed day and remember every day is a holiday!
Yawls friend,
Timmy
</div></div></div>