Worried for my Husband

[Cathy1982]

Hi there,

I was on here around 2 years back as i was concerned about my husband, just a quick round up of his symptoms, for the past 3 years my husband suffered from Muscle twitching, spasms, tremors, some degree of weakness and feeling tired and issues with his swallowing and speech.

We have been to numerous Neuro's and in the past 3 years he's had 4 emg's, 2 from different doctors, the last one was in may last year in which they didn't find any issue other than some minor ulnar nerve issues in his elbow, however the doctors usually have done the EMG on his limbs but never did it on his tongue etc, even when we asked them they said if he has any fabs or degeneration it would show body wide especially if its been over a year.

Anyways for the past month he has really gotten much worse, he was complaining of jaw soreness and after he ate anything a little hard the left side of his jaw would feel tight and sore for a while, also he was complaining of some discomfort when swallowing and his hand and legs were sore, like if he was typing or doing anything with physical exertion he would get tired and need to rest them for a while.

During the past few days his swallowing got worse, its come to the point that he's hardly eating, he hasn't choked yet but he says he feels tired after he eats for a while and needs to rest his throat and also he's lost his appetite, his jaw also feels tired on both sides now, he's also scared that he might choke so its made him even more nervous and anxious, even with soup he needs to take his time now but seems like with water or liquids he's ok as long as he doesn't drink alot at the same time and tire out his throat, he's never choked on it, he has mentioned that eating cold things makes his tongue feel weak and numb and he needs to rest it for a while to recover, also he's noticed that with eating food, his tongue will feel a bit weak ( meaning if he tried to shake it from side to side it would slow down after he's had a few bites ) but after a while it recovers. Cold seems to make him feel worse even in terms of his body and he feels more tightness and even perceived weakness in the cold, but he recovers when its warm.

We went to an ENT last week, he put a scope inside and made him say Ahh and Ehh and check the functioning of the muscles inside, he said it looks alright, also we went to his old neuro and she said that his ESR and CRP are high but she doesn't know whats causing it yet, he's had issues with that in the past as well, he's also had issues with infections and lymph nodes that come and go, however he has checked everything before such as ANA Profile, MG blood test, 4 EMG's and Brain Mri which were all normal mostly.

He's quite uncomfortable now due to his eating issues and scared as well, he also has body aches and spasms from time to time which cause his some discomfort, the twitching is not so bad but it comes and goes.

One thing that i should mention is he's overweight and does have issues with Acid reflux, we are hoping it has something to do with that as it has been aggravated for a few months and last few weeks he was coughing quite a bit as well due to it.

Please any feedback would be helpful and if you think maybe these are signs of Bulbar or something significant.

Thanks

 

[Cathy1982]

Hi everyone,

Just a quick update , my husband went to the digestive center at our hospital and was told he needs to get a Esophageal manometry and 24 PH monitor, they said if there is something unusual in his throats and if it's not contracting probably it will pick it up and if that's the case they will do a barium swallow study followed by a visit to his neuro and a EMG, my husband has literally lost all hope now and he's convinced he has ALS or a MND , his left hand has has been acting up as well such as his thumb which fees tight and slow as well as his wrist, he says that if he uses or exerts it to much he feels it's drained out and needs to stop,he also says his right leg feels tight right behind his knees and he's having trouble walking and lifting his foot , he's complaining that he's been waking up feeling numbness in his hands and feet past few days, I'm losing hope now , he doesn't have any family due to which all the load is on me and it's really driving me crazy, we have a small baby as well and it's becoming so hard and stressful to take care of them alone , if anyone has any advice I would really appreciate it , does this actually sound like ALS or a MND ?

 

[Lixen]

He's been symptomatic for over three years, during which time he's seen numerous neuros and had four EMG's that were normal. It doesn't matter that they didn't test his tongue area, if ALS were on the radar something would have shown up on the limbs that were tested.

Did you take the time to read the sticky? I don't understand why he's 'losing all hope' as nothing points to ALS. Numbness, tingling, soreness, lymph node infections, none of that registers. Something is going on with your husband but after three years of diagnostics and no explanation for his symptoms thus far, I'd say ALS is off the table.
‎
As you were told three years ago, anxiety and stress can reek havoc on the body. The fact he's convinced he has ALS despite any clinical findings to support that diagnosis suggests to me there's a psychological component at work here and you may want to give some thought to ‎having his mental health evaluated as you continue your search for what is affecting his physical health. ‎

 

[Cathy1982]

Thanks for your reply, I really appreciate it , I'm glad your thinking this points away from Als however my husband had a follow up with his old Neuro and when he showed her his hands she said it's seems he has some atrophy on his left hand, he's right handed tho and she scheduled an Emg and NCV in 2 months, he's already stressed and she made him freak out more, he went to his other Neuro who does the Emg's and he didn't seem to think to much of it , he said if there's symptoms then come see him, anyways he had ulnar nerve show up on ThT hand in the last Emg last year but this is thenar nerve so it's something that didn't show last time, I have seen his hands during the past few years and don't notice anything different, they have always looked that way but this doctor seems to think otherwise anyways even though I know pictures don't help much , do you think this looks like atrophy especially on his left hand?

Any feedback would be appreciated

 

[Cathy1982]

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