Diagnosis Netherworld Again!

[Craig Mattice]

Just received and read my neuro's notes from my evaluation visit. Now HSP is "suspect" and we may have in the "differential," meaning mix of conditions to consider, spinocerebellar atrophy.

As posted in another thread, I'm not willing nor in a position to fork out $1,000 for a $7,000 genetic marker test that may or may not get covered by insurance. Therefore, HSP can't be ruled in or out.

I do have MRI confirmation of brain atrophy and supporting neuro/psych eval results reported to me as, I did well for a 76 year old,.........I was only 51 at the time.

Wouldn't it be great if they somehow found out all of this was in my head? Then I could actually do something about it and maybe get back to being a "normal" human being. I know, I doubt this possibility because it does not fit my personality or history in any way.

Will this ever end?

 

[BethU]

Craig, I really feel for you. It's bad enough having to wait a year or two for a diagnosed ... my God ... but to have them second-guessing and back-tracking must be intolerable.

I wonder if MDA (muscular dystrophy assoc.) could help out on obtaining the genetic test. Since they help suport PALS, and your diagnosed condition is so rare, they might include it too. It's worth a call. Also ... what frosts me most about our health care "system" is that hospitals and doctors charge people without insurance much more than they do with insurance. Insurance companies bargain the price WAY down. So, even though you have insurance, it might be possible to negotiate your co-pay. All they can do is say no.

I've got one of those situations where I have a sprinkling of symptoms from other NMDs along with ALS. And just when I think we've accounted for everything, some therapist or neuro throws out an opinion that some symptom of mine sounds a lot more like _________ (fill in the blank) than ALS, and I'm off to the races (Google) again. I've taught myself to (silently) respond "so what?"

I hope you find a way to prove one way or another if its HSP. As to being a normal human being again, you sound pretty normal (and sane!) to me. I think we all have to figure out ways to find joy in our "new normalcy." There are some great people on this forum showing us how its done: Quadbliss, Capt Al, Moderator Al, zenarcher, sharonca, brendapals, rose ... the list goes on and on.

Good luck.

 

[Al]

Beth, thank you for that little vote of confidence. I've had a rough day with a couple of new members so being put in with some very good company on the forum helps to make it worthwhile.

AL

By the way Craig, hope you get your stuff sorted out.

 

[olly]

craig.
i know how frustrating all this must be for you,you come to terms with a diagnosed only to end up back at square one.
beth has given you some good advice,she too has had a few different diognosis's.

were exactly is the brain atrophy? is it in the cellebelum region?
i know sometimes with hsp/pls there can be atrophy.
frontal lobe? girus? can not remember but will have it on file.

for some years i had possible ms,having an aunt and knowing others with ms i was totally convinced it was that.
then after having blackouts caused by plummiting blood pressure celebella/mulit system atrophy was concidered but mri's were again normal.
though one doctor told me if the atrophy was progressing slowly it may not be obvious on the mri.
but now i am classed as having mnd due to failing to find any other cause.

please try not to let all this get you down,at the end of the day it is evident that you have umn symptoms and other things going on.
you have just recovered from a stroke,any stress wont be good for you.
as long as you are getting what you feel is good medical care with a neuro who listens then that is all good.
you can pm me anytime you need to talk or vent.

al.
i am so sorry to hear you are having a hard time.
how you put up with some people i dont know,i always have to laugh at your restrained responses as i know you are probably thinking alot worse.
just know that everyone on the forum care and adore you,we appreciate all you do.

 

[Craig Mattice]

Good Morning Caroline! (Well, in the US anyway.)

I spent a good part of the early morning hours pouring over past medical evaluations I've endured. I found it interesting that as far back as 2006 mention was made of overall brain atrophy and further investigation of SAC (Spinocerebellar Atrophy/Ataxia) expressed in the findings on several MRIs.

Further, this was also addressed in my evaluation results of my neuropsych evaluation in which I fared pretty poorly over all. I must admit though, at the time I was severely depressed, under treated for it, and drinking heavily on a daily basis. All of that has changed since then as I quit drinking altogether in 2006 after this evaluation and quit smoking after 20 years, in July of 2008.

I'm hanging on for the ride and will see where it takes me. I also find it interesting that there has been mentioned in two reports by my immediate neuro group of possible "psychogenic" causes but they can not substantiate it. This is still in the "differential" for my disease evaluation. If you knew me and my personality you would realize this may be way out of line. After all, I'm an X-Airborne/Ranger in the US Army, Police Officer, and was initially diagnosed with MS while training for a marathon. I don't believe I'm the type to be "psycho" anything. Of course I may be totally misinterpreting the term "psychogenic."

Thoughts?