My husband believes he has Als

[BellaBells]

My name is Bella. I am 23 years old I am married to a wonderful man. My husband is a 35 year old male and he has been sick for about 3 months with terrible symptoms. He did get some MRI's done and it did show that he has bulging disc in his neck and lower back.

Also known as herniated disc in the cervical and lumbar regions. The thing is his symptoms seem more severe than what we have read about bulging discs. He had shortness of breath, double vision, hearing problem, and swollen face all of which have cleared up but we are not sure what caused it.

Then he started having tingling in his arms and legs and muscle spasms all over his body. He still has the muscle spasms but the tingling has eased up. His neck is almost completely locked up he can't move his neck left or right or up or down. As days progress and the pain in the muscles around the neck hurt he feels as though his neck gets weaker.

He also has severe back pain and his arms and legs are weak like they cant hold his weight and are really loose. He has trouble balancing and walking by his self. He cant lift or grip objects very often it has become hard for him to even hold his phone and read articles. He can not drive his car or go to the grocery store anymore. He says he feels like his head is falling off as well. He now has trouble even eating by himself getting dressed is a challenge as well as getting down the stairs. There is a fear that he might not be able to walk at all though we are not certain of that.

We have seen a neurologist and he did reflex test and observed the tongue for spasms. He told us that he saw no cause for concern of Als but has suggested that our PCP gets him set up for an eng and nerve testing just to be sure. The pain gets so unbearable at times that my husband feels like the only way out is by death.

I have kept my faith and hope though and have tried to instill the same thoughts into him.
I should also mention that we have been to over several hospitals over 17 times with no results. Doctors in ER tell us there is nothing they can do and we need to see specialist. We don't really have a support system our families don't understand and we keep to ourselves so we don't have friends.

It has mainly been just us two and our daughters which are 4 and 2. I have recently learned about ALS as well as other neurological disorders but I'm not sure if he actually has a neurological issue if any of this sounds familiar I would love to hear your thoughts on the subject.
All comments are appreciated thank you sincerely Bella.

 

[Nikki J]

It doesn’t sound like ALS. He needs to see an excellent orthopedist from the sound of things.

I suggest both of you read the important post at the top of this subforum called read before posting

Best of luck

 

[Jlynn]

Hi Bella...I would suggest NOT going to the ER as we found that they are pretty uneducated about ALS anyway. I would definitely see a specialist to at the very least calm your fears of ALS and really get to the root of the matter so you and your husband and two small children can get back to living life. Good luck to you.

 

[BellaBells]

It doesn’t sound like ALS. He needs to see an excellent orthopedist from the sound of things.

I suggest both of you read the important post at the top of this subforum called read before posting

Best of luck

The only thing is that he says his neck is very weak and wobbly like a bobblehead especially when driving to driving. He was losing weight but is now back to 200 pounds but the weakness is still there in his arms and legs.
My understanding is that ALS causes weakness but would it cause it in the arms, legs, and head all at the same time. Could it be possible that it's limb onset ALS?

 

[KimT]

All of his symptoms point to nerve impingement from herniated discs. When I got a herniated disc from a bad car accident in 2000, I had excruciating referred pain that lasted years.

You can go the neurologist route but my guess is that he will eventually be referred to an orthopedist.

 

[BellaBells]

My only concern is that he never had an accident it came out of nowhere after he got sick. I had him grip my hands and his grip is really weak and he said his hands feel numb like he cant feel them. His hands were also shaky.

 

[lgelb]

If, as it sounds from the way you describe the MRIs and assuming two back specialists have looked at them to rule out scenarios that call for surgery, his symptoms are out of proportion to what the disks look like, he should be referred to a physiatrist (phys med/rehabilitation) who can walk him through the possible approaches to his symptoms that include PT, massage, targeted injections, etc. That specialty often works at a back institute such as what those mentioning an orthopedic practice are referring to. I am confident there are several in Dallas.

But in answer to your question about ALS, and how it presents, the answer is no.

 

[BellaBells]

Also I wanted to add that my husband also has delayed pain. I pinched his hand and he didn't really react but about a minute or two after he complained that his hand really hurt. Both arms feel extremely weak and it's hard to move muscles in biceps and calves that he was easily moving last week. He said it feels like his muscles are sending the messages to his brain to move. His jaw is also very weak could this be a sign of ALS or something else.

 

[KarenNWendyn]

Delayed pain is not a feature of ALS.
The jaw weakness is likely something else as ALS does not appear likely based on the presentation.

In addition to the recommendations you’ve already received, I’ll add to make sure his doctors do a good exam of his joints. Also, he needs a thorough general exam to rule out systemic and metabolic disorders. Make sure they check blood count (CBC), sed rate (ESR), chem panel, urinalysis, TSH (thyroid function). Systemic disorders can sometimes be associated with widespread pain.

 

[BellaBells]

this happened three months ago all the hospitals we went to did blood work but I don't think they check for everything. He started walking funny this started with both feet then moved up to both legs then both arms and hands and also affected his neck to the point that he cant move it around at all. We have read that in rare cases ALS can cause paralysis in as little as three months.

 

[lgelb]

I would have hoped all those visits would have tested the basic things Karen mentioned, but she is right -- it is worth it to go through his labs and make sure they did. And the same applies to examining his joints.

There is just no reason to suspect ALS from what you have said, but your husband certainly deserves a definitive diagnosis. Have you been to UTD?

 

[BellaBells]

if I may ask what is UTD? We don't have very good insurance and the doctors we have seen at the hospitals are very arrogant. They don't take us serious and brush off everything we say. They assume we are overreacting and that what he is dealing with isn't a true emergency even when I mention that he is losing the function of his arms and legs. He is losing muscle mass but he isn't losing weight which is also odd. I'm just here because no one knows what is going on with him and I'm scared to death. We have two little girls who don't know that their daddy is very sick he is all we have and we are really the only family that cares to try and help him. I appreciate all of your feedback and I welcome all comments

 

[lgelb]

Sorry, I abbreviate too much. UT-Dallas. Southwestern.

 

[BellaBells]

it's cool no we haven't been to UT they need a referral and they don't accept our insurance. However I did get the neuro to request that our pcp get him an appointment at parkland for a EMG so hopefully it will be soon. I hope his legs don't give out on him before they set the appointment though

 

[BellaBells]

tonight my husband was asleep and when he woke up I helped in out of bed nothing unusual until he spoke. His voice was very slow and it sounded like a computerized voice mind you his voice seems stable now but it really freaked me out any ideas of what could have caused that?