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Well, that's no good. Hope you pulled yourself together! Maybe that's what's wrong with you Ken, you break into pieces like a transformer, but put yourself all together in the wrong order?

Glad you had a smile .:)
 
I don't think the V.A. will spot for a test for HSP in my case. I think the cost is prohibitive. Not sure if I overheard correctly but I think I heard one doc exclaim to another at the V.A., "He's asking for What?! That test runs about six thousand dollars!"
 
Hello Zaph, about two years ago, my neuro suggested testing by a genetic testing company named "A. Diagnostics" - (I'm just giving first initial of company, as I'm not sure whether it's OK to mention a company name here). Neuro wanted to test for HSP - I was given the VERY SAME figure: $6K. My insurance company (not all that surprisingly) denied to pay for the genetic testing.

Since then, I've largely taken the tack that I need to manage my symptoms as best as possible - and so long as serious stuff has been ruled out (brain or spinal tumor, etc.) any diagnosis is a secondary issue to symptom management. In my humble opinion, it is the "scientist" in some neurologists (particularly university neuros who also must do research) that drives their need/want for more and more testing. As I have said in a very recent post, I have ask the docs to cease and desist with their wild testing. With exception of what my present neurologist wishes to do for routine maintenance (e.g., EMGs every 6 months), no more no more.

I should underscore for everyone that my approach is only a personal choice based on nearly 3 years of testing - at which point nothing more (with exception of finding a genetic etiology) can be pursued....my approach should not be pursued by everyone - but I have personally come to the point at which enough is enough. Symptom management is my life's preocupation now.

Mike
 
Mike, I agree with you. Having HSP over PLS, really just comes down to the prognosis, the main point being PLS will always eventually involve bulbar region. The treatment is the same.....symptomatic. It's certainly my husband that pushed for the genetic testing. I don't really think my neurologist gave a dam. I think the fact that my neurologist husband used to be his boss, must have swayed him :).

I was at first told I would have 6-9 monthly EMGs, but that made no sense to me either. Sure if I developed profound deterioration and weakness, then it's indicated, but otherwise I saw it as a waste of time. I refused my last one and I was well enough that when I went for an EMG in June, it was agreed to put it off another 6 months. My neurologist seems to like the fact that I have taken my treatment into my own hands and away from my husbands and his.

Hubby spots atrophy everywhere, it's imaginary on the whole. If I get worried then I will have an EMG, not because HE is worried. Power over these men is so uplifting :)

Best wishes Aly
 
the neuros...poor lambs..know precious little about the motor neurons.....so not much help there....so keep taking the painkillers and suffer constipation..and the rest....ore take the baclafon and make yourself so weak all u can do is lol around...and get hardening of the arteries as well.....u gotta move around it makes things a little better..until u get to old to care ,whatever........and whistle when u hurt....johnnywatdoiknow......
 
i do , often, in tmes of many, utter in garbage of failed lateral ideas...my heart is guided by the sat nav of a ford zetec.....a holed exhaust obscuring my view that is reality...i shall in future , not in my foot my mouih be ......come on u blues........johnny loves.....
 
oopsy...why i ford not nice.........took the tax payers cash in bailout, maybe............ johnny
 
Ha ha. There is a gre at competition in Australasia between Holden v8 and Ford v8. They have a series of street races through out the region. I drive a Holden v8. So blah to Ford :) nothing to do with money, just good fun.
My parents have 2 fords so blah to them :).

For the English out there....Holden is owned by vauxhall I think? You can't get Holden commodores or ford falcons in UK.
 
my cars a vauxhall,,,just broke down....and the dealers repair prices are ridiculous....and the local garages aint got the technology to even find out wats up with it....rip off and merchants spring to mind....so take the v outer vauxhaul and shove it.................................al good for ford...my next car........johnnysoftlad.....for buying a vaux...............bye the way sue.f..why the like....i couldnt understand wat i posted, how could u......loves softlad
 
I've had 2 MRI's which ruled out MS, a neck/thoracic MRI, and then my neuro said genetic testing for HSP. Athena Diagnostics called me and said the cost was $16, 970. My insurance doesn't pay for genetic testing. For that amount of money, I'd buy a new car! No thanks! So I have a probable diagnosis of PLS. Been going to drs since 2004. Each year I'm worse. I'm so thankful for this form though. As least now I know for sure I'm not crazy and all of my symptoms aren't just in my head! I had stopped going to drs for a while because they could never find anything and I know they thought I was making things up. Thanks for all your posts everyone!
 
I would not rule out lymes though. They always test for recent exposure, and never do the 2nd test for past exposure. My cousin had a negative 1st test but the 2nd test for past exposure came back positive.Her whole body hurts, joints eaten out, headaches every bone and muss in her body hurts. ALS and LYMES have alot of the same systoms. She has a port for pain meds it's so bad. She lives in PA....
My ALS started in his throat, what he called was a thick felling in his tongue. Bulbar Pasly, like a ping pong match , dad has ALS, no he doesn't, just when we thought we doudged a bullet it made a 180 a came back again. I know the spinal tap ruled out like 350 other things.Started in throat and worked it way down, dad still drove his car til the day he "Went to the Party in the Sky" Alot of weight loss from not being about to eat, alot of apple sauce and ice cream. Could not drink anything with out the thick-it. Feeding tube helped for awhile. Don't worry til it is time to worry. Good Luck, sorry you are here.....
 
Hi to all. I am also new to this forum, but have some similar symptoms. I am 58 and was very physically active until 3 years ago when I began to experience right leg weakness. This started with the thigh muscles. Progression has been slow but steady. Weakness now in both legs, thighs and calves with foot drop on left when tired. All symptoms more severe as I become tired. Arms slightly weaker, but even clumsier than my norm. Also have pins and needles both legs and feet and both arms. This is small fiber neuropathy and could be unrelated and separate entity. On neurology exam have brisk (5+) reflexes, along with positive rhomberg and positive Babinsky in right foot only. Also fatigue and falling asleep inappropriately (like when driving) . I keep trying to tell others (docs & family) that my mind is going too. I have diminished concentration,& memory, and I "phase out" frequently. Even have some hallucinations that are tactile, auditory, and visual, but are brief and occur most frequently when starting to fall asleep (hypnogogic) . When I tell the docs they change the subject, and when I tell family they insist that I was always odd. Have been tested for dozens of possible causes from HIV to Lymes to MS and spinal A/V malformation. Neurologist now wanting to start treatment without formal diagnoses. I will be starting pulse IV steroids to be followed by Cytoxan. I have been most helped by someone on these boards who wrote that diagnosis is too far away and too limited in usefulness to focus on it but rather to focus on what practical things we can do to improve our lives now. By example, I now try to always have my cane because I may not need it at the beginning of the block but I will before the end of the block. Still, this is a frustrating, isolating illness that is both nebulous and devastating. I wish you good fortune and good friends.
Lee
 
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