Diagnosis help Please

[pammy]

It has been 15 months of chasing a diagnosis for my husband. It started for him with weakness and pain in his shoulder. After xrays, MRIs, and parathyroid scans all returning normal results, we went to a neurologist, she was not certain of diagnosis, she did an EMG which showed some Fibs, fasciulations and misfiring (?). She basically treated him with pain meds, as time progressed she noticed muscle wasting and weakness. In the meantime my husband was still in pain and having alot of fasiculations. We went to another neurologist that specializing in diagnosis, he did every blood test imaginable ie. genetics, cancer... He performed an EMG, and started mentioning ALS. My husband does not have hyperreflex, his speech has slowed not slurred, he does have weakness and muscle wasting in both arms and one leg. We were just to another Neurologist in NY, who is uncertain himself, now he wants to check the parathyroid again. I really don't know what to do from here, if anyone has any advice or had something similiar I would greatly appreciate. My husband is losing his patience he feels that he doesnt' want to go to more docs at this point just frustrated.

 

[GlenBrittle]

Hey Pammy,
Welcome to the site.

Its has been said that diagnosing ALS is done after everything else has been ruled out. It does take forever to the person that is suffering.

Are the neurologists of the general type , or specializing in ALS/MND ? My first neuro did a battery of tests over 14 months and then told me that he was referring me to another who was more specialized. No one even mentioned ALS to me until I was fully DX'd .

The pain in the shoulder isnt an ALS symptom , but may be the result of abusing it due to weakness elsewhere.

If you think you are getting nowhere , ask a simple question to your doctor. "What would you do if it was YOUR SPOUSE ?"

Tell your husband not to give up. Its all about attitude and energy.

Glen

 

[Zaphoon]

Pammy,

Glen is right on when he says the pain in the shoulder could be due to misuse/overuse to compensate for weak muscles else where.

Frozen shoulder syndrome could also be the culprit for weak and sore shoulders. It was originally thought I might have ALS because of shoulder muscle atrophy but after a clean EMG, ALS was thrown ruled out. Mean onset for frozen shoulder syndrome is age 50 (precisely when it got me).

I have read where some that have been diagnosed with PLS have experienced frozen shoulder syndrome. I fall into that group, for now. PLS is only a differential diagnosed for me. I'd like to think I have a self-healing disorder.

Best of luck in coming to a good, final conclusion on what the true culprit is!

Zaphoon

 

[crystalkk]

Pammy,

Welcome to the forum sorry that you have to be here... I can understand your husbands frustration I have been chasing a diagnosed for 2 1/2 years now. The dr that you are talking about that specializes in diagnosis was this an actual ALS specialist? You say your husband doesn't have hyper-reflexes which kinda points away from ALS if he doesn't have any UMN signs at all.

 

[pammy]

I would like to thank you all for your responses, Crystal, although he does not have hyper reflexes he does have fasiculations, weakness, atrophy. THe Dr. also noted fasciculations in the tongue, he does not feel them though. Yes both neuros that we have seen specialize in ALS. I know my husband will continue, I think he is physically tired as well as mentally. It is hard he used to be able to walk 5 miles a day, now a 10 minute stroll makes his legs rubbery. I really don't want to complain her I know that there are people here that have it much worse. THe one specialist did say that the pain is not a usual symptom but that it does present itself in other ways. Does anyone here know of someone that had an EMG that points to ALS, muscle weakness, fasiculations,
and some use of arms that had another diagnosis. THanks again for caring.

 

[Erica]

HI Pammy,
Sorry to hear about your husband problems.
My symptoms also started with R arm/shoulder pain; couple months later R arm atrophy and weakness were noted.
I also, have fascics and general fatigue.
I had Neck, brain, R shoulder and brachial plexus MRI. EMG of R arm showed denervation.
One of neuro gave me a diagnosis of MND, another one said "not likely" and wants to see me again in a couple of months.
I addition, I have some throat problems, including throat clearing.
On neuro exam was noted that my Lcalf is 1.5 cm smaller then R .
Why are they going back to your husband parathyroid?
Best of luck to you, Cookie

 

[pammy]

Cookie, the way that this Dr. put it, it was an avenue we should explore because you would rather have hyperparathyroid than ALS. I think my husband is just so frustrated because of how he is feeling and the fatigue. At this point we will do whatever the Drs suggest, but we do feel like we are on a roller coaster.

 

[laurel]

Hi Pammy. My husband has CIDP and has muscle wasting/atrophy of the right hand and right forearm, and some weakness in the right leg. He had fasciculations, fatigue, and weakness. All four limbs show axonal damage. Some episodes of weak/hoarse voice. He had a differential diagnosis of ALS in the beginning. He has been treated with IVIG monthly for nearly two years with good response. I would suspect that your husband's doctors would have considered CIDP and perhaps have ruled that out, or perhaps MMN?
Laurel