Symptom question???

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samnikolep

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Ok so I guess this is where we are at. He is 28 years old in February 18' he had severe back pain that went down his left leg. Then in may we noticed twitches in his biceps and triceps and his pain went away at this point I noticed he was walking differently not quite limping but just an odd walk but getting around normal. then in late June he started to fall once a week then in September he fell and broke his ankle. He started noticing weakness the first of September and it has gradually progressed ever since. He is still fairly strong but nothing like he use to be. I tell the doctors about the pain and about the hiccups and about the bladder problems and bowel problems but they arent worried about any of that. So symptoms I want to know if anyone else has are:

Signal hiccup after eating? We haven't noticed any bulbar region. But does anyone single hiccup after eating. Or even during eating? It will last for about 2 hours after he eats but one only like every 10 to 20 minutes?
he feels a lot of urgency with his bladder it takes him a while to get going most of the time. And dribbles a lot when he says he is done peed a lot throughout the day and gets up at least once a night 6 nights a week
His vision is getting worse but could be from age? Idk
lower back pain when up and going or even setting but comes and goes.
Chest pains mainly when he wakes up in the morning but can last for 15 to 20 minutes at times happens roughly 5 times a week when he wakes up, oxygen levels are good
He is also having problems with staying hard during sex his penis is also like withdrawing in any men having these symptoms I know you dont want to talk about it but I am really worried about him the tip also turns purplish after showering or standing for a while.
Fasciculations in all of body except face. Do these ever slow down or go away?
He cant multitask at all anymore and says um in every conversation and forgets a lot about what he is gonna say maybe 4 to 5 times a day depending on the day
Bowel problems he never gets to far from a bathroom hasn't had an accident but we always stay close to the restroom cause he says he cant hold it like he use too
Thank you all who reads through all of this I know it's a lot just trying to help him. I pray for a cure for this unbelievably horrible disease. God Bless You ALL!!!!!
 

GregK

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as there was no ALS diagnosis either outright or implied, this thread has been moved to DIHALS.
 

Bestfriends14

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Your very descriptive pattern of symptoms is not anything to do with ALS. What brought you to an ALS site for his symptoms when you've not described an inability to do things?

Know that you can move on from this site as there's nothing that, and I mean not one thing, that says ALS. Best to take queries to your doc.

Best of luck to you and take good care.
 

samnikolep

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So sorry that I didn't explain well he has been diagnosed with ALS was wondering if these other symptoms with muscle weakness fasiculation hyperreflexia babinski reflex. Abnormal emg. . . Just wondering if these other symptoms were normal with ALS or if I should get him in to another doctor or different doctor or if all of these symptoms are related to ALS in a 28 year old. Sorry.
 

Bestfriends14

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I'm so sorry to hear of your partner's diagnosis. How sad at only 28.

I've not heard of those symptoms being a result of ALS, but perhaps in your boyfriend/husband's case it may be coincidental. If this has been going on for a while, though, you may want to seek another opinion, especially if it is causing discomfort and interrupting his daily routine. There are others on the forum that may have better answers than me, however.

As for ALS, did he get a second opinion from a Neuromuscular specialist? I'm sorry again about the diagnosis. Please ask questions as people here are informative.
 

Nikki J

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If he has not had at least two opinions from ALS specialists agreeing he has ALS that should be your first priority Important for anyone but vital at 28. You are reporting things that do not go typically along with ALS. He should have told his diagnosing doctor all of this ( I hope he did). The full picture is very important. If he does have ALS then his doctor should be advising him what can be attributed to ALS and the stress of diagnosis and what needs another type of doctor
 

lgelb

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I'm sorry to hear about this diagnosis and very much agree, seek a second opinion if you haven't. It looks like you are roughly equidistant from several cities/states with clinics, so if you need a second opinion or want to evaluate options for care, here is a map.

Best,
Laurie
 

KarenNWendyn

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I’m also sorry to hear about the diagnosis. It sounds like your question is whether or not ALS accounts for a lot of his symptoms. No it does not.

Specifically, the following would not be expected from ALS, especially in someone recently diagnosed:

- Back pain radiating down a leg. That sounds like a disc/ radiculopathy problem.
- Bowel and bladder problems
- Vision changes
- Lower back pain
- Chest pains
- Sexual dysfunction

I would be concerned about compression of the nerves leaving the spinal cord or on the spinal cord itself (myelopathy). A herniated (slipped) disc would be the most likely cause in a 28 year old, but occasionally tumors, blood clots, and spinal fractures can also cause these symptoms. Has he had an MRI of his lumbosacral spine?

I agree with the others on getting another opinion just because there are so many symptoms that aren’t explained by ALS.
 

samnikolep

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Yes we have told both als specialists that we have seen and they both said it has to be als due to nothing else showing up. They dont seem to care about his other symptoms at all. Just wondering where to go next went to the mayo clinic and to a local als specialist the local specialist did and emg and looked at an mri from july 4th in November. And the mayo looked at it and said that it was a good enough mri to not show any signs of anything so he moved on from there. He did do a lot of bloodwork but no other mri.
 
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