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Mike. You sound rather like me, and many others I think! I am soon going off down the genetic testing route. Its been 4 years of searching, tests, and adding more doctors gets you nowhere fast. I would not pay for the tests, but may be able to get them paid by the government system here. Personally I would rather have new clothes, shoes and handbags, thats exactly what I told my neurologist today. I also told him I had a warped sense of humour, hey I am a woman who loves shopping more than non conclusive expensive blood tests.
 
Aly, I don't like to shop (ugh!), but I'd rather go shopping than undergo any more testing.

My neuro (a very good one) surprisingly referred me to another neurologist - who I saw last week. To be candid, what a jerk he was. Because I'm on a statin, he asked me if I'd ever been taken off of statin drugs and/or switched to another -- yes, on both accounts....in fact, the switch to a different statin caused serious liver problems - and I ended up having a sonogram, tons of costly additional bloodwork, and I had to see a gastroenterologist for a year over that mishap. And so the "new" neuro wanted to revisit old ground......OK, the lyrics to the Pink Floyd song "Wish You Were Here" come to mind here: "Running over the same old ground, what have we found? The same old fears."

The "new" neuro decided that he wanted to do Creatine Kinase (CK) and thyroid testing, and also thought that a new set of EMGs would be nice to have "because we have good EMG practitioners here"...

Uh, thanks but no thanks, Doc. I think I'll be goin' shopping instead. :)
 
gotta say...this thread is a bloody good informative read,,,,,johnnylad
 
I am off for the HSP genetic tests on Wednesday. My sweet neuro, pulled some strings and they will be paid for by govt. No doubt the results will take ages to come, but will keep others happy.

Won't put a dint in my shopping budget! How can you possibly not like shopping lol?
 
Best wishes, Aly, on the genetic testing...hoping that all goes well for you.

Take the "savings" ($$$ you did not have to pay on the testing) and go shopping. :)

Nope, don't like shopping, Aly....not at all.

Mike
 
You need some shopping lessons.
My 5 vials of precious blood has been spilled. 4 hours of driving for it! Madness. My neuro said he doesn't expectv
positive results, but the information is very useful and will help stear him in the right direction. Seeing as it was free, except the waste of a day, I don't mind.
Will wait for 6 weeks before he sends the most expensive one off, then another 6 weeks. Then if alls negative, an EMG. Then I shall disappear from the diagnostic round about for another year or so. :) works for me.

Hope you are going ok Mike. If you ever want to chat, just pm me
 
My HSP testing (recessive only) had a price tag of 6k, but my cadillac insurance blithely covers "laboratory tests". My doc did knock off the non-recessives since neither of my parents presented with HSP to help the pill go down easier on the insurance end.

Although the results are inconclusive, knowing I have a bad SPG7 gene has been really helpful in understanding why I had muscle problems in my hands and jaw many years before the neuro damage got there. It also sounds cood in conversation. ;)
 
Wow Becky, I thought $3k was heaps. Yea your cool gene thingy is pretty cool! Well you know what I mean.
 
Definitely nothing happens fast with diagnosing difficult cases. I've been trying for over 20 years, and finally, just very recently in fact, have decided to just treat symptoms as they come about.

Breathing was an issue--got a bipap and O2
Walking was an issue--got a scooter and PWC when canes became useless and manual wheelchair not usable due to arm weakness
Hands are useless so I use a computer a lot with a touchpad

See what I mean? I've just learned to adapt and function with what I have. My disability was approved very quickly--and to this day, I don't really know the final diagnosing criteria to get it approved. i was in a nursing home (assisted living) was unable to walk and wearing diapers. No one knew then or knows now what is really "wrong" with me.

It's only been in the last year that things have progressed to the point that my tests are abnormal in many areas. My signs are almost all UMN--clonus, spasticity, babinski positive, etc--and still no official diagnosis of anything other than fibromyalgia.

As for my syncopal episodes, they were found to be caused by both mitral valve prolapse and atrial fibrillation. I used to pass out weekly before they found the atrial fibrillation. Til that point, it was all in my head according to the docs--as by the time they got me on a monitor, the heart rhythm had corrected itself. It was only when I passed out on a treadmill that they saw the a-fib I'd spent years being told was all in my head that they treated the problem and gave me meds to prevent it (and the subsequent blood clots caused by the afib)

My point with this novella is not to be obsessed with answers--they could well be a long time coming. I'm definitely not in good physical shape and doubt I ever will be again--but if I dwell on it, I'd end up so depressed I'd check myself out.

I hope you are able to learn to just function the best you can with what you have.

Aly--let us know how your genetic testing turns out.
 
notme,i too have had the syncope episodes for approx 7yrs now.
had many blackouts with one resulting in a full blown seizure were i even stopped breathing for a few seconds after fitting before coming round.
i had one time severely low bp were i was having difficulty breathing(i sometimes had a aura feeling like out of body experience if it dropped way low,or i would break out in a cold sweat and collapse)................anyway, the day after i had an appointment at the tilt clinic to go on the tilt table but they would not do it due to my low bp.
the doctor was concerned and did a ecg,it showed that i had had an abnormal arrythmia.
i had to go to gp for regular ecg's and bp check for a few months but they did not check into it further.
funny seeing your post today because yesterday while sat down i had the cold sweat feeling like i was going to pass out feeling.
 
I am so glad I didn't get talked into paying for the tests. My med student daughter was practicing her neuro exam with Hubbies help and I was the guinea pig. It was noticed that the 4+ reflexes are now in my elbows. They were not there in June! Rats! Hubby said, well you don't have HSP! Why didn't I get that decided the week before, would have saved me the trip to Auckland and the Auckland DHB having to pay for them.

Closer I creep to PLS .
 
well wen yer really give it somethought...as i do using my superior interlect....as i do wen naughty tommy is eating nellies toffee sticks...wen the nervous system is rusted up....you actually could have any symptom of any sort.....at any time..couldnt you...pretty dangerous dont u think...wad u think....johnnyconnie,onnie/
 
Johnny I ever know what to think, I do not have your superior intellect,.
 
yes i have superior intellect...but..to what..theres the rub........its takes an interlect to realise this........so i give up,,,,cos me head hurts.....loves the pooler
 
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