My husband believes he has Als

[affected]

Bella would you mind not posting in bold? That way our mods don't have to go in and fix every time.

You aren't describing ALS even a tiny bit, so I'm sorry but we can't keep reassuring you of this over and over. Please do let us know what it turns out to be as this helps others who have the same fears.

 

[ShiftKicker]

Bella-

While it is good to document how your husband is being affected by his symptoms, this info should be passed on to his medical provider. This forum, while helpful, is not the place to sit for long periods of time searching or engaging, and can actually increase anxiety if you are not able to gain reassurance from the folks who have answered you already. Please re-read the replies you have received from 6 VERY experienced members, some of whom are medically trained, and really take in what they have said to you. It does not look like ALS. What it actually is is up to your husband's doctor to track down, not the members here.

There's not much more people can do for you here unless you have something to report from the doctor, or have returned test results.

 

[BellaBells]

I finally got them to give him an emg the problem is that they didn't do his neck or back which is where he has the most weakness. I read that they test all areas such as the neck back tongue but he didn't do any of those just the arms and legs and feet. It came back as normal but I'm wondering could it only be normal because they didn't test the problem areas.

I was wondering if it could be PLS since it came back clean? He can still walk on his toes and heels even though he says his legs are weak and he can still walk around a baseball field which he does sometimes.

He has to wear a neck collar though because his neck muscles are very weak his neck movement is almost non existent he can barely move it at all and even touching his head causes intense pain. It has to be something like that though because nothing else explains such symptoms.

 

[Bestfriends14]

Hi Bella,

Yes, where they tested was enough. They are the specialists and know what they are doing. The arms would suffice to referred areas like the back.

Anyway, ALS doesn't start in the back (or I've never heard of it starting there anyway), and intense pain does not describe ALS onset. Period.

I'm sure you've been told this already so is there a reason you're seeking the exact same answers again? Perhaps following up with professionals who are equipt to deal with whatever is going on with your hubby would be the best bet, and most beneficial for you.

Good luck to you, Bella. Take good care.

 

[ShiftKicker]

PLS does not present with head pain. It is a complex thing to diagnose, but a neuro exam will indicate something is going on if something like PLS is on the table. It's not a mysterious undetectable disease- only that it can not be solely diagnosed via EMG. There are definitely patterns that can tell a neuro that there are UMN issues, but they are not enough on their own to diagnose it.

Please understand that the people here do not see a motor neuron disease in the symptoms you report. That does not mean there is nothing going on, just that it isn't ALS. If you review the pinned post https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html again, there is a long list of things that share similar symptoms. And it is not complete by any means.

There is not much more that people here can do for you. Not through reluctance, only that you have mined the resources here to their fullest depths. People have answered your questions and provided advice and really can't do much more than that. Not because they are unwilling, but because there's only so much a stranger on the internet can do when it comes to complex medical issues. It is not appropriate to try to convince people here of your husband's issues- that gets you zero help and only wastes your time and the time of the people here and very likely delays getting appropriate help for your husband. The people you really need to be working with are doctors. They will be the ones who are able to examine your husband, answer questions about their observations and provide you with information about where to look next with regards to getting to the bottom of his symptoms.

Best of luck in your search.

 

[BellaBells]

Thank you for your reply. I was just wondering why they do test in the back neck and other areas of the arms are a good enough area. Also they have no explanation for the neck weakness he had no injuries or accidents but he has problems holding his neck up. I was wondering if PLS was a possibility since that does involve neck weakness and head drop syndrome. Also it wasn't done by a neurologist but a examiner pt,ecs.

 

[ShiftKicker]

Again, the doctors are the people you need to be discussing your husband's particular symptoms with. Both ALS and PLS are a constellation of symptoms, of which weakness in a particular area is only one possible symptom. Weakness alone is not indicative of anything other than "weakness". Like having a cough can mean anything from mild throat irritation to lung cancer. You need to be discussing next steps and symptom causes with a doctor in person.

Please understand that posting here can't get your husband the help he needs. Not due to unwillingness of people here but because your husband needs to seek the care of a doctor. Push the doctor, ask your questions of them- they are the ones who can refer your husband to the appropriate specialists.

 

[Kristina1]

You are writing about a lot of sensory symptoms- pain, numbness, etc. ALS doesn't present with sensory symptoms because only the motor nerves are affected in MND, not the sensory ones. The classic onset presentation of ALS is painless progressive weakness. While what you write sounds concerning, nothing sounds like ALS and you now have a clean EMG. I would cross ALS off your list and focus your energy on figuring out what the next step is with the herniated discs. Other members suggested an ortho specialist; that sounds a lot more productive.

 

[BellaBells]

I understand and I appreciate all of you taking your time to respond to me. I was still concerned about bulbar only because his voice is fluctuating and he says he has shortness of breath along with it being hard to swallow water so I'm not sure about that. The neurologist never actually did a neurological exam I heard that was important so maybe I should at least see another neurologist for that aspect? There isn't an Al's clinic in Dallas that accepts our insurance so we have to go to these rinky dink doctors that accept Molina

 

[BellaBells]

BellaBells
In ALS when you have muscle atrophy do your muscles feel soft and smooth when they start weakening. Has anyone experienced that or do your limbs feel like jello like when your arms drop would they drop like noodles

 

[BellaBells]

The skin in the back is smooth and feels like it has been replaced with fatty tissue also hair used to grow in those areas and it no longer does

 

[lgelb]

He doesn't need an ALS clinic as much as any other doctor/clinic who can coordinate a diagnostic workup, including appropriate referrals. Since Molina will have more internists than neurologists to select from, I would ask around, including on line, for someone good.

 

[BellaBells]

A hospital is saying they wont have a opening until next year. He can walk from one end of a big warehouse to the other end without falling. He is still having extreme back weakness and neck weakness. The skin on the neck is really soft and he has odd lines around the neck that weren't there before wondering if that could be atrphy? He is having difficulties with breathing I know it's rare like 5% but I was wondering if maybe it could be thoracic onset als. He seems to have all of the symptoms except nothing has completely stopped working yet. What really concerns me is the limited neck movement as well not too many diseases weaken your neck to the point that you cant even move all the way to the left or the right nor up or down.

 

[Lkaibel]

I am sorry your husband is in such poor condition right now, but it is pretty clear from your descriptions that he is not dealing with ALS.

My husband is and he won’t be here this time next year. Keep pushing to find out what’s going on and be glad you are not us.

 

[BellaBells]

I apologize for your husband's condition my prayers are with you and I appreciate you taking the time to respond. My husband is just strongly concerned that he has it. The co came back normal and the first emg was normal but if they only tested T1 in the thoracic and cervical can they truly detect thoracic als just from the area they tested. His pcp believes a second emg is in order just to be sure but being african American is extremely hard to get anyone to take us seriously especially considering the problem with not having good healthcare. We have had several other normal test and they haven't told us anything. Also as a side note his arms swing a lot and there is no explanation.