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GrandmomMarci

New member
Joined
Aug 28, 2011
Messages
9
Reason
PALS
Diagnosis
08/2011
Country
US
State
PA
City
Reinholds
Hi. I've been reading this site for months...not believing that one day I will be here. But here I am. I still have way more questions than answers. One thing I learned from this site is, every case is different. So maybe one of you can shed some light for me. I'll try to be brief.

I'm 57, female.. in jan. 2011 noticed having trouble going upstairs, thought I was getting old. :p By Feb. I went to family doc.. she upped my thryroid meds (I'm hypo).. I was back to her by April..this time saying all over muscle weakness..climbing stairs, and getting off low seats, especially toilets. She took me off Crestor.. said I will be feeling better in weeks. May 4th.. climbed a huge flight of stairs.. legs went all wiggly.. fell into side window.. ended up with 12 stitches down my cheek.. Obviously not Crestor.

Took to end of June to get into a neurologist.. upon examine, he felt myopathy..talked with me about the steroids.. but he wanted me to see a neuromuscular doc at another Hosp. Two weeks later, this other hospital never even called me back.. so the 1st neuro ordered EMG. Mid-July... report says, clinically I presented as myopathy, NCS normal, but EMG showed motor neuron disease.... but this doc who did EMG felt another EMG might be needed...since he couldn't find any upper motor neuron dis. which would be typical for ALS. Now the neuromuscular doc was interested enough to see me. End July saw him...he did clinical examine and thought ALS immediately, but ordered MRI of brain, spine, more bloodwork, and then spinal tap. Mid August went to see him...he says MRIs normal, bloodwork normal, spinal tap normal, you have ALS. And yes, it's an ALS hospital..and he's thier expert. He was definite on the ALS

okay, I wanted 2nd opinion (which I think upset him,) but he referred me to Hopkins. Finally got to Hopkins Nov. 2nd...and I insisted on new EMG...since this is what they were diagnosing me on. New Neurologist there (ALS specialist too) examined.. said he was leaning toward ALS ... I said where are my upper motor neuron disease symptoms.. He said I didn't have any. His official diagnose is: possible-probable lower motor neuron predominant ALS. (He said ALS is diagnosed three ways...possible - probable - definite.)

My main question: Does anyone out there only have lower motor neuron disease?

2nd question: All my symptoms... are symmetrical. (no throat/voice/swallowing problems at all) Both my legs went weak at same time.. One day in July both my hands/fingers got a numb feeling same time. I thought ALS was never symmetrical.
Even the current EMG states: "The symmetrical proximal muscle weakness and a few 'myopathic units' seen suggest that an irriable myopathy such as 'acid maltase' may need to be excluded." So it's not me saying it's symmetrical, it's showing up as symmetrical.

Question probably for Wright: the NCS showed this time: "Left median SNAP shows reduced conduction velocity across wrist" and "Left median CMAP shows prolonged distal latency & mildly reduced conduction velocity across the forearm without temporal dispersion. Left ulnar CMAP shows reduced conduction velocity across the elbow. Bilateral peroneal CMAPs show reduced amplitudes.. F waves normal."
"Needle EMG shows increased spontaneous activities and MUAPs with reduced recruitment pattern, large amplitudes, increased duraction, and polyphasia, in all tested muscle, except for left deltoid which also showed several MUAPs with small amplitude & decreased duration along with the above findings."

I get most of it.. bad stuff: PSW; fibs, fasc. etc... but there seems to be a lot in there that doesn't point that way. I saw were a needle EMG shows the same results for ALS as it would for a perpherial neuropathy. The NCS will make the difference.

There just seems to be too many questions still to accept the diagnosis. But I'd be damn if I know which direction to start looking in. I'm thinking CIDP, but I'm not sure how to test.. or even if massive steroids will make my ALS symptoms grow faster.

Between 1st diagnosis, and 2nd possible, I have to use a walker for short distances... wheelchair for anything longer than 20'. Barely managing showers.. I can pick my foot up maybe 4".. both feet the same. Arms are weak..fingers weak.. I can still move everything... just can't really do anything with what I'm moving.

thanks...You guys are the best and so courageous and very generous with your time.
 
Welcome to the forum :) Sorry you need to be here though.

I don't have the knowledge to help you interpret EMG findings, but, others here will.

If you are treated for CIDP, and it turns out you have ALS, it will not make the ALS symptoms speed up.

A pure lower motor neuron disease is PMA, and this forum does have a section dedicated to it, but I don't think it is overly active.

I go to Hopkins, I was originally diagnosed with bulbar onset of ALS, and although that still stands officially, unofficially it is believed to be a motor neuron variant, no name at this time given to narrow it down. I am most definitely lower motor dominant, I have very little upper motor involvement.

You are in good hands at Hopkins, they do like to re-run tests that have been previously done elsewhere, and have their own analysis of lab results, rather than taking another institutions interpretation.

Hopefully it is something like CIDP and you have hope of improvement. If you are lower motor dominant ALS, that can be slow moving, there are members here who have had slow progression in this category, Ann (abbas child) being one I think of right away.

Good luck to you, regardless of what is wrong, you will adjust and find ways to cope. It will become your 'new' normal life, even if its a life you never envisioned living.
 
I had just LMN involvement and one guy said ALS. Second opinion was MMN. 3rd and 4th opinions said ALS. So 8 years later it looks like I have ALS. Don't lose hope it takes a while to get a diagnosis sometimes.

AL.
 
Thanks Rose and Al. Hope everyone here had a Happy Thanksgiving. I'll be talking with my GP about possible steroid treatment.. or have her contact Hopkins to make sure it's okay etc. I have nothing scheduled with any doc to a clinical in March at Hopkins..which all just seems remarkable to me. I mean you have ALS... now go home and come back in four months. I have a contact person at the Greater Philadelphia ALS assoc.

I semi-checked into the Tomaxifin (sp?) trial being done at Hershey... but if you're dibetic you can't be in it. I'm borderline (fasting sugar is in the 120s...) which probably means I can't be in it.

It's nice to know there are a lot of friendly people on this forum... but damn, I really don't want to be here.
 
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