In Limbo

[Jamiet]

Don't make too much of it, i was referred to the director of the houston ALS clinic, then to the co-director. Supposedly, they say with 110% certainty i don't have ALS.

Great, so what's got me so screwed up..

Don's is the name, several others also. I live a hop-skip and a jump (few miles as the crow flies) from the Farm.. Interesting.

Were you back after Katrina, do you think that had anything to do with your issues. Mine popped up right after Katrina and i did work in NO by the NASA facility right after Katrina.

 

[Pythia]

Strong is not listed as an ALS clinic or center on the alsa.org web site but they have a wonderful reputation.

I want to start researching the current research on ALS; does anyone know of a good place to start?

Thanks,
Pythia

 

[ltr]

Pythia - Strong is an MDA certified ALS Clinic . That is what to look for. Like CJ said on another post, the MDA provides funds and such to the MDA/ALS Clinics. Not sure why it is not listed there, I didn't look. But, the MDA referred me there and they are listed on their own site as MDA. There MDA Clinic is every Wednesday. Dr. Hermann is the Director of the MDA Clinic at Strong. Here is the link....

http://stronghealth.com/services/neurology/clinicalservices/mdaclinic.cfm

 

[screwedagain]

I can't recall anything happening before surgery, other than about 2 weeks before the operation I started having pain in my right leg (all of the pain from my back injury was down my left leg up to that point). I told my ortho, and he said that sometimes swelling can jump to the other side and irritate the nerve root there, too.

Immediately after surgery (6/21) and the post-op pain, for about 2 weeks I had very little pain, no twitching, no gagging. Then my shoulder pain and hand swelling started, then in mid August I started getting weakness in my right hand and the twitching started in my legs.

The other day I was playing with my nieces (I have 3 - 6 yrs and 15 month old twins), and the next day I was in excruciating pain - my forearms were really tired, and it felt like someone was stabbing me in my bicep just above the elbow.

Oh - just got a call from my neuro's office, too - my blood tests (for autoimmune disorders) were normal. I asked them to have the doctor call me so I can ask him if he saw something in the EMG other than the fascics.

Jamie - I was back only briefly after Katrina. I evacuated that Sunday to San Antonio (which took about 18 hours), spent a week in a hotel with my two cats, and then drove home to NY. In the meantime, I wound up getting a job offer here, so in mid-September I drove back down to get the rest of my stuff and haven't been back since...

 

[screwedagain]

Well, I just talked to my neuro, Dr. Evasive. I got him to admit that there was "evidence of denervation" on the EMG - I'm not sure if that's the same thing as there being fasciculations, or if there was something else (abnormal waves or whatever). He did say that it was suspicious for ALS, but that he wasn't sure, blah, blah, blah...

Also had a follow-up visit with my ortho. On the good-yet-possibly-useless-and-a-bit-ironic news front, my back is healing nicely. Yeah, great. I asked if there was any way that my surgery could have caused twitching - naturally, no, it could really only cause muscle spasms in the L5-S1 corridor, but not in both legs like I am having, blah, blah, blah....

 

[guwainengle]

Hi Screwedagain--

I was thinking of you when I read the US News and World Report magazine for the Best rated Hospitals-- Believe it or not-- The Mayo in Rochester MY is rated #1 in Neurology.. I did not even know Mayo have a facility there. You may want to check this one out-- I am not good with geography or spelling but I think this is Upstate and close you. Mayo is known to be one of the best and the magazine rated alot of different aspects. Hope this helps you on your search for diagnosis.

G

 

[ltr]

G - nice try! That Mayo is Rochester, Minnesota. I'm not good at geography either! Actually, my clinic is in Rochester, NY and I would be sooo happy if there was a Mayo there as well. But, it was a nice thought. :-D

 

[guwainengle]

Sorry-- thought there was only 1 Rochester.

G

 

[Al]

Well if the President is bad at geography , how do you regular folks expect to be? LOL
Al.

 

[Peg B]

Hi Screwedagain,

You are so young and I am so sorry you have to go through this. But you are obviously strong and bright and have been through a lot. I would like to stress a couple of points. @1 FINISH THAT DEGREE. I hope you are registered for this semester. You will have it under your belt and the time is going to pass anyway. It will be better to have the Masters than not. I met a man two weeks before he and his wife died in a car accident, visiting his mother on spring vacation. I knew something was wrong with his hand when I shook it but had no idea he had ALS for over 30 years. He got DX when he was working on his PhD and told his advisor - "I have to finish my PhD fast." and he did and had a wonderful career as a school administrator. Please let us know about your decision regardig school.

#2. I was first told I had ALS/NMD for certain by a neuro (Oct 31,2006). He sent me, right away, to University of Michigan ALS clinic. (Dec 2006) They said it may be something different and I get treatment/testing for MMN (multfocal motor neuropathy). We still don't know for sure. I remember thinking: Is it good or bad news to be "accepted" to be seen by U of M. But it is better to know as much as possible.

#3 You have gotten good advise about not worrying. It doesn't help or change anything so get the meds that can help with that.

Please know that the thoughts and prayers of the people here are with you. Most Sincerely, Peg

 

[screwedagain]

Peg - you had to wait 3 months to get to the ALS clinic?!?!?!? Holy crap - I'm coming apart at the seams having to wait 3 weeks! You must have a will of steel.

What are the diagnostic criteria for MMN? Did you have an abnormal EMG, etc.? As far as I know MMN is an autoimmune thing, but so far my blood tests aren't showing that's the case. I've also read that MMN typically results in a lack of reflexes, but mine are heightened...

I'm not sure about finishing the degree, yet. I'm so distracted and unfocused that I can't seem to do the work to my satisfaction. I'm considering taking a leave of absence for the semester...I could always go back in the spring. I haven't made a decision yet, though.

 

[Pythia]

FINISH YOUR DEGREE! I dropped out of grad school for what seemed like insurmountable odds; now it is one of my biggest regrets.

...just my 2 cents

 

[Peg B]

Hi Screwedagain, (Jeff?)

MMN and AlS in many ways, are the same. My blood work shows no "autoamune" and I have one borderline conduction block. (clear DX of MMN calls for two conduction blocks.) MMN has treatment for the symtoms (IVIG) but no cure and the underlying disease progresses on. As far as ALS I have no upper motor neuron symptoms at this time. One internet site said that sometimes "the upper neuron ...(issues) don't show up until autopsy." (that gave me pause):neutral: I had abnormal EMG in three limbs. I am currently DX with either "Atypical ALS" or MMN. I am grateful it looks more like MMN as I am not any worse and I now can move my baby finger - atrophy right hand. Whatever I have is very slow so the best I can do is do the best I can do. My only fear is to live 10, 20 or less years worrying instead of living. That would embarass me a lot.

Also we told our kids 25 and 28 right away (24 hours). We believe in "the best news is no news" so our kids and sibs can trust that everything in OK unless we tell them different. That way none of us have to worry.

And about that paper... Salem Mass. is an excellent theme I always thought. Best luck on getting that done!

Best Wishes, Peg