Here we go AGAIN

[kmendsley]

Seriously I have the worst luck with drs. and I just found out how bad my past luck with them was today.

First let me say that my appt. today was good! But I found out how horrible the ones before that were.

So did the whole physical exam for the neuro med student...then after that the actual neuro dr. I was sent to who specialized in "movement disorders" started to do some basic quick tests...realized how horribly I was doing on them and did the whole neuro test over again from head to toe so he could see the 'abnormalities'(as he put it) for himself. So very grateful for this.

What I found out in this appointment, was that I was never tested for the more complex but treatable diseases...a blood test....was all they would have needed. I guess since I kept getting bounced from dr. to dr. they figured someone else must have checked for: lymes, menigitis, TB. Yeah no one did apparently. Now those tests have been sent off am I am being tested for Wilson's Disease, Hunignton's Disease, Ataxia, Parkisons...pretty much any neurodegenteritive disease. ALS still not off table but wants to order other tests first...go figure. I am glad I am finally being taken seriously and not being told 'oh lets wait and see...or in time you will get better.' I have progressed so much with whatever I have in the last couple of months here that a dr. is unable to turn the other way and say it is not there. (You can always tell something is wrong by the neuro's face when they test and retest with a bit of a frown for every neuro exam."

To think almost two years ago I presented to an urgent care with coordination problems and not being able to balance...just bugged a little since I was a dancer.

Now, I walk at the speed of my grandmother with two prominent footdrops...actually my left foot kind of just drags on the floor now...incredible shakiness with all movement, abnormal neuro exam- pos babinski, pos hoffmans, hyper reflexes, weakness in trunk and limbs, hesitated speech, muscle cramping, and hands that 'rest' now in balled fists toward the center of my body...like a fetal position. Who knows...I don't anymore...I just asked if he would please figure this out cause I am just so tired of the 'song and dance' with different drs. He said he would try his best.:-o I am glad someone for once...is noticing that there is a problem...I was beginning to feel like I was crazy!

Thanks for listening and hopefully all the other tests are being taken care of. Whatever it turns out to be, even if not ALS now...though diagnosed twice with it already(dr has thrown out these diagnosis till other tests are done), I hope you all will welcome me to stay on here to keep up with my 'virtual friends'. You have all been so supportive....thank you so much.

 

[Alyoop]

That is tremendous news. It makes such a difference having a capable competent neurologist at the helm.
I hope they discover something more treatable than ALS. Here's hoping
Aly

 

[asantiago]

Me too! Would be so wonderful if it were something treatable! Best wishes to you!

 

[llwlpn]

(((Hugs))) I'm glad that you're finally getting the testing you need. I hope that it's something treatable.

 

[notme]

Well, at least you probably don't have to worry too much about Huntingtons unless one of your parents has it, as it's hereditary (so is Wilson's for that matter, I believe). Did they do the skin test for TB? Can be diagnosed with a chest x-ray as well. A spinal tap for meningitis? (My daughter had meningitis, it's not fun to have)

Hope they can find you some answers. No one has done blood tests in the two years you've been going to doctors? I had assumed they had done the rule-out tests and the EMG that ruled ALS IN.

 

[kmendsley]

notme, that is what I thought! I had gotten a ton of blood tests but for some reason none were for those specifc things. Kind of bizarre. The new dr. was quite surprised as well. I have learned now, and have asked for full records from every dr. I have seen. I hope it can be pieced together soon, and yes I hope it is treatable as well

 

[kmendsley]

oh yeah have been bested for TB by arm and chest xray...both clear.

 

[Miss]

Here's hoping it is something treatable like Lyme disease!

 

[HelenL]

kmendsley, if you haven't done so already, call every doctor you've seen since your symptoms began, and get copies (I prefer digital ones so I can print them out) of every test result, every office note, etc. and put it in a binder for yourself. I did this last year after the local neuro diagnosed me, and before I went to Beth Israel to see the ALS neuro. I also looked at the blood results myself, and catalogued anything that was "out of range" since I started having problems in Aug '08. I also did a timeline of my basic health going back years. I basically had nothing much wrong with me until this started.

I'm so glad that this neuro is actually doing something, it must be such a relief for you... I'm praying that it is something stupid like Lyme Disease, which although it can be really nasty, at least it's treatable.

Hugs to you!

 

[Bhappy]

Kell,

I'm so glad you seem to finally have a doctor you can trust! I'm cheering for something treatable!

Hugs! Mary

 

[Jellycat]

I am so glad you have found a neuro who listens & is going to do his best. Here's hoping for good news.