Mabye ALS? Alot of weird symptoms...

Posted by nick0912 @nick0912, Jun 23 6:03pm

Hello.

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 200 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.

Here is a some more symptoms I had. ( Im sorry for the long list)

1: Temporary weakness in both arms which lasted a 2 days. (started with one arm and then one day went over to the other arm. - This disappeared again after 2-3 days.

2: I had a period when I got pain in my right leg and foot every time I drove a car. It disappeared again.

3: Have had a period where it was lot of difficulty to swallowing. This have happen over 3 times, last about 1-4 weeks each time so far.

4: Brain fog in 24 days.

5: Had a period where I quickly became hoarse if I spoke a lot, and tried in my kind and jaw, this has also gone away

again, and has not been seen for some time.

6: Had pain in my right leg for no reason, could walk, it was just hurting. that is gone is aswell, but right now my right foot is hurting when I walk, it does not feel weak (yet) just hurting.

7: Have had a period when I got tired quickly in both my hands when I sat in front of the PC (gaming)

used keyboard and mouse. This lasted about 1-2 weeks but went away again. Which was last oct.

8: had sensory disturbances on the right side of the face. above the lip in the cheek. (Both sides, but not at the same time)

9: Has sensory disturbances often on the right side of the body, feet, legs, arms. This can also go into left side. (Did not seen this in a long time now)

10: Had some wide body pain. "nerve" wich went away with prednisolon.

11: Right shoulder pain wich it all startede in, that is still there, but only 2/10.

12: 5 weeks ago "saturday" I got pretty tried in both my legs really quckly, had to ofte sit down. that lasted 3 days before that was gone.

14: left hand pain, wich was gone 1 week after I startede use a grip trainer.

15: Had a problem at one point wich I could not sleep on my right side as always normaly do, everytime I did it was hurting on all my limbs on right side, there was notthing on left side, that went on for a week or 2, and then it was gone.

This is just some of the symptoms i had, there are some more, but so far they last some times and come, there can be more than one thing at at time.

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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Have you seen a good neurologist? If not, I believe that is where you can get these questions answered.
There is a simple test for ALS that could put your mind at ease.
Best of luck to you

REPLY
@slip275

Have you seen a good neurologist? If not, I believe that is where you can get these questions answered.
There is a simple test for ALS that could put your mind at ease.
Best of luck to you

Jump to this post

Hello.

Thanks for reply.

Yes i did, Dec 2023. He Said notthing was worng, and say pain is not part of Als and did not do a MRI scan or eng...

Right now i have so much pain in my right side of the body, rigt leg, back, butt and neck. Even if i Lay Down in bed it hurtigt... i Can still Walk,

I feel the muscle are so weak that i Think that is the cause for pain..

I had breathing and talking problem aswell for 6 days, but that went away Yesterday and now i talk fine? Is that normal in Als?

REPLY
@nick0912

Hello.

Thanks for reply.

Yes i did, Dec 2023. He Said notthing was worng, and say pain is not part of Als and did not do a MRI scan or eng...

Right now i have so much pain in my right side of the body, rigt leg, back, butt and neck. Even if i Lay Down in bed it hurtigt... i Can still Walk,

I feel the muscle are so weak that i Think that is the cause for pain..

I had breathing and talking problem aswell for 6 days, but that went away Yesterday and now i talk fine? Is that normal in Als?

Jump to this post

Look into multiple sclerosis or myasthenia gravis as possibilities. Try a different neurologist maybe at Mayo or a university hospital where they see more unusual cases. Note that my son and I both have a rare hereditary neuropathy that has caused ongoing weird issues like that for decades. Very slowly progressive. I was tested for suspected ALS, MS, MG and my son for CMT but we have extreme cases of HNPP. It’s very frustrating and challenging, impacts quality of life yet doesn’t stop us from living life. It will probably not shorten our lives. I share this to give you hope that it may not be anything life threatening. Lots of weird and unexplained neurological problems out there. Look for a neurologist who will at least listen to all your concerns. Prayers for you.

REPLY

@nick0912
You sound like me. You need MRI of head but especially cervical spine. Something pressing on your spinal cord/nerves can cause head/face/neck/arm/hand/leg and swallowing/speaking issues. I was finally diagnosed with cervical spondylitic myelopathy and had urgent ACDF surgery to relieve pressure on my spinal cord which can cause permanent damage.

REPLY
@nick0912

Hello.

Thanks for reply.

Yes i did, Dec 2023. He Said notthing was worng, and say pain is not part of Als and did not do a MRI scan or eng...

Right now i have so much pain in my right side of the body, rigt leg, back, butt and neck. Even if i Lay Down in bed it hurtigt... i Can still Walk,

I feel the muscle are so weak that i Think that is the cause for pain..

I had breathing and talking problem aswell for 6 days, but that went away Yesterday and now i talk fine? Is that normal in Als?

Jump to this post

Hello, i was reading what you wrote, and i find that i have almost the same pain as you, 3 weeks ago i had xray done and the results were not that good, it says that i have (minimal sclerosis at the inferior aspect of the left sacroiliac joint unchanged) i had xray done before no one ever told me, i have the same pain as you, of the left side knee , back, and up the butt and even a little upper, also now i can feel pain on the right side knee, the pain that i get if i sit down for one hour or more and get up that is really when i have the pain, if i walk goes away. I take tylenol it halps me a little, i don't know what to do, i hope you feel better, take care

REPLY
@fde11

Hello, i was reading what you wrote, and i find that i have almost the same pain as you, 3 weeks ago i had xray done and the results were not that good, it says that i have (minimal sclerosis at the inferior aspect of the left sacroiliac joint unchanged) i had xray done before no one ever told me, i have the same pain as you, of the left side knee , back, and up the butt and even a little upper, also now i can feel pain on the right side knee, the pain that i get if i sit down for one hour or more and get up that is really when i have the pain, if i walk goes away. I take tylenol it halps me a little, i don't know what to do, i hope you feel better, take care

Jump to this post

@fde11 If you have issues that affect body alignment such as the pelvis, it can affect alignment of the knees and cause pains on one side of the knee. When I get that, I know I need to adjust my pelvis with an exercise that my PT showed me. She also said that ignoring knee pain can cause wear and tear that may lead to a knee replacement later on. Prevention is a lot better than a knee replacement.

Here's a link to a somewhat complicated explanation about how alignment issues can compress nerves and mimic spine problems. Since symptoms change from being seated to standing, that is a clue you must tell your providers which would help them diagnose the issue. Those symptoms could also indicate a possible spine issue and this is important to discuss.

"How to identify and treat lumbar plexus compression syndrome (LPCS)"
Posted on March 30, 2017 by Kjetil Larsen
https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
Have you considered consulting a physical therapists for an evaluation?

REPLY
@jenniferhunter

@fde11 If you have issues that affect body alignment such as the pelvis, it can affect alignment of the knees and cause pains on one side of the knee. When I get that, I know I need to adjust my pelvis with an exercise that my PT showed me. She also said that ignoring knee pain can cause wear and tear that may lead to a knee replacement later on. Prevention is a lot better than a knee replacement.

Here's a link to a somewhat complicated explanation about how alignment issues can compress nerves and mimic spine problems. Since symptoms change from being seated to standing, that is a clue you must tell your providers which would help them diagnose the issue. Those symptoms could also indicate a possible spine issue and this is important to discuss.

"How to identify and treat lumbar plexus compression syndrome (LPCS)"
Posted on March 30, 2017 by Kjetil Larsen
https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
Have you considered consulting a physical therapists for an evaluation?

Jump to this post

@jenniferhunter Thank you for sharing that link! It’s helping me understand some of my back and leg issues.

REPLY
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