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sharona

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Hi everyone I'm new to the forum. My husband Larry had the shingles in 1999 & then in 2001 had started having alot of weakness & fatigue went to the doc who did heart studies all normal then he sent us to a neurologist & without even an exam he was told that he didn't have anything wrong.He wouldn't go back to that doc so he started seeing his family Doc this year in May. Because now he is having muscle twitching & shortness of breath upon minimal exertion. This Doc sent him for mri of the brain,cervical spine, pulmonary function test chest xray blood tests etc. also saw a pulmonary Doc who says neuro muscle so when we went back for followup the doc said he should see a neurologist so we did this one said not neuro muscular go see a psychiatrist for your depression.We fired him on the spot & started seeing a new one ,she ordered mri of thorax,lumbar & did an emg. she said he had some carpal tunnel but everything else was within normal limits.She did not see twitching at that time & said she didn't think ms or als.but wanted us to go to a University for followup but we are able at this time for me to drive into the city so we stared seeing another neuro that specializes in muscle he did a clinical exam & sat there shaking his head the whole time saying I don't like what I'm seeing, muscle atrophy hyperreflexes babinski reflexes muscle twitching in both legs & arms then he said clinicals point to als.we both just sat there crying so 2wks later he did another emg still pretty normal then a muscle biopsy was done & it's normal so now we have another appt.next Thurs. The waiting & guessing is making us both very stressed, Praying for God to not let this be the diagnoses.I really enjoy reading everyones posts you people are a God send it helps to be able to come on here & see that most have a very positive attitude.God Bless all of you.
Sharon
 

Al

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Hi Sharon. Welcome to the forum but sorry for your reason for being here. Trying to get a diagnosis can be one of the most frustrating ordeals of this whole disease. With the history your husband has I would be asking for a referral to an ALS Center or Clinic. I assume you are in the US so you could find out where they are from the ALSA website or your Neuro should know where they are. Good luck. AL.
 

CindyM

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Hi Sharon. I am so sorry you and your husband are going through this. Al is right, it is very stressful trying to get a diagnosis and the long waits while they test for everything can be nerve wracking. Keep in touch and let us know how it is going! Cindy
 

liz

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Hi Sharon -

How did your husband's appointment go? Any answers or just more questions?

Liz
 

sharona

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update on Larry

Hi Liz,
When Larry got there he had him undress & he & his partner both came in to check his reflexes & check for fasciculations. naturally it did it all day & after but not while they were looking .He said the EMG'S aren't that bad so now he is leaning towards PLS or something else . He ordered 15 complex blood tests, ct of the chest, abdomen & pelvic,also a spinal tap. We go back in 1 mo. we are confused because the PLS site states you don't have muscle wasting or fasciculations.This is driving us both crazy it's about all we talk about.God Bless.
Sharon
 

liz

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Hi Sharon -

Sounds like all Larry's going to be doing for the next month is getting poked, prodded, and probed. No fun at all but at least it is in the aid of getting to the bottom of whatever this is. Al wasn't joking when he described the diagnostic phase as an ordeal. Any thought of getting a second opinion at an ALS Center?

Hang in there and try to squeeze in a little fun during the holidays.

Liz
 

MtPockets

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Hi Sharon,
I'm sorry to hear Larry is having to go through all these tests. We've been there done that and it's no fun.
Also if you could possibly get to an ALS Clinic for a second opinion it would help greatly instead of having to wait and worry.

I know just this past month I woke up in the middle of the night with my left leg all swollen up from the knee down to the foot and in terrible pain. Went in the next day to see my family doc and he said he could not feel pulse in my foot so sent me to a ultrasound place to check arteries. They could not get me in until 2 weeks later, well by then the swelling had gone down and was feeling normal again.

They checked arteries and veins and said I must have had a blood clot at the time 2 weeks ago and the next time it happened to rush right in. Yeah, they tell you that and then the nurse who sets the appointments says oh we don't have any openings until whenever.
I know the system gets so frustrating, waiting for a DX. I just pray for a good one for you and Larry. Hang in there, you are not alone.

God Bless
Capt. AL
 

sharona

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Thanks

Hi Liz & Al,
I really appreciate your prayers & support .Our faith in God is all that keeps us going at this point. The 2 doc's Larry has both came from 2 of the best universities in neurology in our area the University of Chicago & Washington University in St Louis Mo. I have been looking on their web sites & both do alot with ALS I guess after all this if they don't have any answers we will go to the U of C at least all the tests will be done. God Bless.
Sharon
 

Al

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Hi Sharon. I have been using the Washington University website for Motor Neuron Diseases information for a few years now. As you say they do a lot with ALS and I would think they would be thorough but sometimes it just takes a while for things to get bad enough for the docs to be able to say you definitely have ALS. I've seen 6 different Neuro's since Oct 03. A third opinion certainly wouldn't hurt. AL.
 
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