A lot of different symptoms

[Youngman31]

Hello.

First of all - I have been reading the read me before posts.

I have been dealing with alot of werid symptoms the past 1 ½ year wich is odd. Some symptoms is progressive meanwhile some has come and go.

My right leg and right foot give up really fast, it starts to hurt if I walk more than 500 meter.

In the past 11 mounts I had off and on problems with swallowing food and water, in that sens that I could choke on water everytime I drink, that could last for 1 week, then be gone for over 60 days, return and so on. ATM that has been gone for over 7 weeks.

I can get alot of muscle/body pain aswell, almost every day in both shoulders, arms and legs and in the back / neck. specialty in the legs while laying in bed.
On top on that I get a weak feeling in my shoulders, and arms. But I can do things like 4x 12 push ups without a big problem.

I tried alot of different pain killers that I got from my GP.

List of Pain killers:

Panodil + Ibuprofin (Does not help 90% of the time)
Diclofenac (almost same story)
Prednisolone (Been on it for 5 days (25mg) 2 times now. - Both times it take all my confusion and most of my pain, but not the weakness and other problems. The pain return when I dont take them anymore. I tried 12.5mg aswell, that did notthing to me.

Morphine 5mg that does the trick in 95% of the time when i have a outbrust of muscle/body pain.

In the last 4 days I got a new symtoms that Im really worry about, and that is my breathing. I feel is hard to talk because I have to focus on "breathing" all the time, like im short of breath, and cause of that I really dont wnat to talk... Again I have no issue with eating and drinking at the moment.

How does all this sounds? is this a case you have heard before?

Note: I have fine muscle twitching 24/7 in both sides of my neck and stormach, but they can happen at any place in my body time to time but only for 2 sec. The only place where it contanst is in that 3 place.

I thank you all for the time you taking to read the post, and wish you all a good day.

 

[Nikki J]

It doesn’t sound remotely like ALS. Since you have read the stickies you know that sensory symptoms point away as does the “all overness” of your symptoms

You have obviously seen your doctor. What do they think is wrong?

 

[Youngman31]

Hello Nikki.

Thanks for your reply.

Well to be fair my doctor dont really know to what do with me at this point. I have been to a neurologist about 6 months ago. He dismiss me at the time cause of my pain and sensory symptoms aswell as you point out is normally not part of ALS. But I must said he was maybe not the best doctor i meet in my life. He did do some blood test wich all came back negative. But he did not do MRI/Pet or a EMG.

Is kinda werid with all the pain, right now im laying in my bed, and getting pain in right shoulder, back and pain in both feets.

Im going back to my GP the 1/7. He is working as a private rheumatologist aswell outside his "work" where he help my local GP to take some clients like me. But right now he dont really know what to do.

I feel it hard to "enjoy" the life right now, with the pain, headaches and dizziness, weakness and so on, if im not at work im mostly in my bed. Im glad you saying it does not sound like ALS at this point, and I hope it stays that way.

 

[lgelb]

Morphine for pain that you cannot explain is an exceptionally bad idea. In addition to potential tolerance/dependence, it makes breathing harder, increases dizziness, etc.

I would see a rheumatologist and also make sure you were tested for endocrine diseases, such as diabetes and thyroid conditions. But I agree, I don't think you have ALS or anything like it.

 

[Youngman31]

Hello Igelb.

Yes I know that morphine is not a stabile solution... im trying not to use it at all.

Since Sunday (23/06-2024) I had difficult breathing in that sens that I did hunger more for air than I normaly did, and that made it really hard for me to talk. So I avoid it... But 2 days ago that went away out of the blue? Now I talk alot better and breathing is getting better.

But the pain in my right foot, leg and hips / back and neck is just to much... is hurting even if Im laying in bed, and just getting worse. No matter if I stand still, lay down or walk, it hurts. I get hand pain aswell, but that is in both my hands.. I still dont have any clinical weakness so far, but I cant really run on my right leg.

All my muscle is getting fatigue faster than normal aswell.

Is it normal that you get that much pain in one side of the body in ALS while you can still walk and so on? I mean if the muscle is getting weaker that could be the reason for pain cause they have to work harder?


Note the pain im getting is not cramps.

 

[Nikki J]

No it still doesn’t sound like ALS. Pain like that is not a presenting symptom of ALS. Nor does the improvement you describe align with ALS. I understand you are in pain and frustrated but you are in the wrong place here. No matter how many times you ask no one here will tell you differently

 

[Youngman31]

Hello.

I did not want to make a reply last time as I wanted see what time will bring. I had a problem where my right hand got tried really fast if played some video games, but screems somehow better "I think"

Anyway my pain is getting worse and worse day for day. I have pain in my back all the time, and started to get pain in my right hip when I walk. I do have pain in neck aswell. My pain is really out of control, takeing pain med every 6 hours for like 30 days now with little to no help for the pain.

Does anyone know ALS can do this meanwhile you can still walk and do normal stuff??

Note: Some time I has problem with talking a little bit, and werid feeling in right or left side in neck, that can bounds around, and come and go.

To late to edit my post... but got pain that come and goes in arm, feet and hands aswell....

 

[Nikki J]

For the third time no. Whatever is wrong you are not describing als

Closing thread because we are going in circles. Do not start another unless you are reporting a definitive diagnosis of whatever this is. I am sure it won’t be ALS