My Husband Got Sick In January & I am Scared.

[jeff23]

Hi Karen & others,
My Husband has seen both Rheumatology and Hematology at UCLA and both point to Neurology & Neuromuscular. Neuromuscular points to Rheumatology.

We've gone down cancer route and docs said no.
paraneoplastic syndrome came back negative.
All scans negative.
Although still due for a full body pet scan. Neurologist said wait on that due to all other tests coming up negative.

Neuromuscular and Neurology are the ones less sure about wanting to even allude to this disease although emg's seem to be getting worse (in my humble opinion as it's just numbers declining).

- Feb 5th first EMG normal
- March 19th second EMG neurologist said normal (he lied)
abnormal results now in 5 muscles, less recruitment in 2 previously tested muscles (30 days apart)
- April 26th third EMG (different doctor)
abnormal found four muscles now with less recruitment and a fasc in left calf muscle.

Yes I am aware of the less recruitment happening is in one generalized area with his thumb muscle almost completely wasted away plus his bicep and shoulder has lost a lot of muscle even after PT as well as his extreme neck weakness tongue fatigue and swallowing difficulty.

The doctor that performed the most recent emg tried to test bulbar area and could not get a clean read on the Mentalis muscle of the face so he gave up and just marked it as normal.
That's not normal.
I video recorded the entire emg as I did the previous two emg's so I have proof.

My husband has pain in the back of his head where the head meets the neck and according to bone scans and MRI's he should not have pain there. According to the doctors he should not have pain there.
He has lost a ton of weight and its not fat. He can barely type on a computer or lift his arms to shower and bath himself. We have to wrap his wrists at night because they're so weak. He now wears a brace to sleep on his left arm and that alone keeps him from getting any sleep.

I am sorry if some of you don't believe me or don't like what I am saying but this is happening. Two of our Neurologists just referred his case to Kec neuromuscular doctor (who has a ton of experience) so I would think that means something.

I absolutely want this to be something else, I pray every night for it is something else. No one should ever have to have this disease.

I am not making this up, I am not trying to break forum rules I am just trying to get support and some outside advice. With your collective vast wealth of knowledge of this disease I figured this would be a place for support and for me to ask these questions.

A friend of ours got misdiagnosed with back problems and it turned out to be ALS. He lost and entire year trying to recover from the operation. That's time he could have had with his wife and kids on vacation some where when he still had his mobility.

This was 5 years ago and he has passed since then, he didn't want to go on the vent. I see similarities between his issues and my husbands especially after talking to his wife. Similar emg's, similar progression that doctors blew off until he was severely impaired.

Thanks for your support Karen, mush appreciated. You are unbelievably caring and empathetic. I am going to try and take your advice to get him all scanned up.

Up next a nuclear bone scan and possibly a pet scan to look for other issues.

If all else fails I am bringing him to Mayo Clinic on May 13th to figure it out.

Please, Please, Please be rheumatoid problem or anything treatable.

Thanks,
Jessica

 

[KarenNWendyn]

You must be going through h*ll with all this uncertainty. I don’t know what to say other than fingers crossed and we hope for the best for you and your husband.

I’m not sure there’s anything more people on this forum can tell you at this point. Please come back and let us know how it goes with your upcoming consultation(s).

 

[Bestfriends14]

I hope it is something treatable, too. The positive news is the more you post his symptoms, the further away from ALS it seems, what with the pain in his neck and the quick onset of symptoms that have rapidly spread.

We will await your update after your appointment in a couple of weeks.

Good luck.

 

[jeff23]

Got appointment at Sedar's for May 20th with an ALS specialist. I believe he will be able to tell me what my husband has by then or at least what direction to go in. His hand muscles are weak and are wasting away. No need to go to Mayo now. It's only a week from Monday. Wish us luck.

Thanks everyone,
Jessica

 

[KarenNWendyn]

Best of luck. I take it that you decided on Cedars over USC. Let us know how it goes.

 

[lgelb]

I hope it's something treatable, Jessica. Fingers crossed.

 

[jeff23]

The doctor had his mind made up before we even walked in the door. He said see a psychiatrist. Come back in two months and then we'll see you again. Clinical exam showed wasting in his hands, twitching in his hands and fingers (especially thumb muscle).
My husband has muscles twitching in his fingers and hands with muscle atrophy.
He clearly has weakness and muscle cramps, not failure but severe weakness and cramps in hands, wrists and forearms (with some people cramps, weakness and twitching is first signs of ALS).
My husband lost all stamina, can even walk up stairs without becoming exhausted.
His head is hard to hold up, swallowing difficulty, tongue keeps cramping up on him.
His left leg keeps giving out on him and is getting weaker.
He has lost his sense of balance, cant walk a straight line.

I need a real ALS specialist to check him out and give him the all clear or to tell us what truly is going on rather then blow us off.

We don't plan on just dying here, we plan on battling this disease. We need to know now not 6 months from now if he need to get moving here. He has gotten progressively worse and no one cares.

Is this status quo?
Do they really not care when they diagnose someone because there is nothing they can do??

Frightening to me.

 

[KarenNWendyn]

I’m sorry your experience with specialists has been disappointing so far. I can only image how horribly frustrating and terrifying this must be. Yet three neurologists now are saying this is not ALS (including specialists at UCLA and Cedars). EMGs have either been normal or showing minor abnormalities. Did the neurologist at Cedars do an EMG? What did he say about your husband’s physical exam?

I suppose you could see yet another ALS specialist, but what if they also tell you it’s not ALS?

It sounds like they are at least offering followup. Cedars advised you to return in two months.

Clearly there’s something wrong with your husband’s health. It’s just sounding less and less like ALS. Unfortunately some conditions don’t always declare themselves right away and take a while to diagnose. Doctors may say “wait and see” because of this. It doesn’t necessarily mean they don’t care, but I know it may come across that way when you don’t get the answers you seek. Waiting can be painful. I truly wish you the best in getting to the bottom of this soon.

 

[jeff23]

My husband just got his muscle biopsy results back and it’s not good.
• He has mild acute neurogenic Denervation. (See attached).
Type 1 & Type 2 fiber involvement
with type 2 prominence with no evidence of fiber type grouping.

The doctor that did the biopsy said there was also irregularities in the fascia when she was inside his leg. She was not clear what those irregularities were and it’s been impossible to get a hold of her.

Our neuromuscular doctor didn’t answer any questions for us at all. Every question was met with us being ignored or he talked in circles with no direct answers to anything. Is it ego of being wrong? I don’t understand.

We had written down questions before we got there and didn’t check one off as he didn’t answer any.

His opinion has ruled out:
MS
MG
GB & variants
Diabetes
My husband doesn’t drink or smoke
And according to his EMG he performed before biopsy negative for ALS yet this is becoming more doubtful now.

Why would a doctor not even say it’s possible now with even more definitive results?

He said nothing points to ALS because emg before biopsy was negative. Only positive for left ulnar neuropathy.

Current confirmed symptoms by doctor:
- Muscle wasting in hands, wrists and arms
- muscle weakness (not failure yet but def weaker on hand grip test then last time). He’s a lefty and his right hand is now stronger then his left
- trouble swallowing
- weak neck
- tongue cramps up when he talks
- weak left leg and right leg below the knee
- trouble walking
- biopsy site herniation


I don’t know what to do or how to get answers. This is so exhausting.

Any advice would be greatly appreciated.

 

[KarenNWendyn]

I’m sorry you still have no answers. You’ve had terrible luck getting these doctors to talk to you. I think at the very least, they could offer you an opinion as to whether your husband might benefit from physical therapy or at least some adaptive equipment and maybe short term disability until the course of his illness becomes more apparent. Unfortunately not all illnesses have an immediately obvious explanation, and many take some time to declare themselves. Hopefully his will level off over time or even improve. Sorry we can’t give you more answers, but thanks for sharing your story here.

 

[affected]

I'm sorry too that this is taking so much time - it sure looks nothing like ALS which is great, even if that hasn't answered exactly what it is.