Feeling the possibility of ALS

[Sam Sam]

I started out feeling shortness of breath. It was worse laying down. A month later I would get pain in my pinky knuckle and left hand. Noticed the grip was weakening. Shortly after that, I had soreness in my legs from lower thigh down to shin. I would occasionally get that crawling feeling in my shin. Felt like a bug was inside me. Both legs had the soreness. Then it moved to my arms. They get sore as well. I get weird sensations of my back burning for no reason. Lately, I have dealt with pain 3-4 a day of burning on my skin. Feels like my extremities were set on fire. I also have real signs of weakness in my hands and legs according to my doctor. I have a family member that went through ALS so this is concerning me. Last thing I was told was go see a neurologist. I had some c5 and c6 mild degenerate disc issues show up.

 

[lgelb]

Did a neurologist examine you?
Did you have an EMG?

 

[Sam Sam]

I am scheduled for this in 3 weeks. Do these symptoms sound like ALS causes? The burning in arms and legs can be unbearable at times and my grip strength is really poor.

 

[Bestfriends14]

No, not at all, but only your doctor can tell you what is going on. What you described is not onset ALS at all, but what is happening, again, needs to be determined by your doc.

 

[ShiftKicker]

Sam, please make sure to read the Read Before Posting thread. It contains the answers to your questions.

 

[Sam Sam]

I have been extremely fatigued for 5 days. I have 20 lb grip in left hand and 30 in right hand. That’s wayyy below norm. I have stiffness in legs but the burning is gone. Been told burning has been seen in other patients. Sis has ALS. Guess I have Familial type. All I want to do is sleep. No strength. Nothing on CT of brain and neck but MRI will be next. I can feel numbness in face and voice change. I really feel like I’m in the early stages. I just have so much of the symptoms especially the weakness and fatigue.

 

[KimT]

Sam,

Try not to jump to conclusions. I know you're scared and I know you have symptoms, but let the neurologist give you a good clinical exam and decide whether you need further testing.

It's hard to wait.....I understand.

 

[Sam Sam]

I have read them. My sibling currently has ALS. Her initial symptoms were different than mine. I have soreness/heaviness in legs from knee to ankle. I also have no grip strength. My back has atrophy. It looks like a big indention from mid spine downward. My muscles in arms seem smaller and sore. I have trouble breathing and tremendous fatigue. Still waiting on my primary to schedule my appt with the neurologist. It can’t come soon enough. I’m confused why some ask me to read the rules. I definitely did before posting. Seems like ALS patients experience a wide variety of symptoms at onset. All of my blood tests including CK, ANA, C protein, WBC, etc are good. That scares me. Seems like an autoimmune disease would trigger one of those results. Had CT scans of neck and brain look good but was told that means nothing.

 

[Nikki J]

we can’t diagnose you. You are convinced and it is certainly not our place to argue. Please let us know what the neurologist diagnoses

 

[Sam Sam]

Still waiting on neurologist appointment. It’s frustrating that this is taking so long to get scheduled. With my symptoms and a sis in final stage ALS, I’d think they would get me in. My left leg is still sore. Has been a month now. Sometimes the knee to ankle area, stiffness in calf, and partly in thigh. Get occasional hip pain and buttock beating like a heartbeat. Right leg sore but not as bad. Can’t breathe when laying down. Have to prop myself up. Can still do normal activities but fatigue gets me eventually. And inside of my palms sting. Gripping steering wheel is tough. The waiting and unsure part of this is so hard. I just want my appointment and answers. Then I can tackle the issues at hand.

 

[affected]

Please do let us know after your appointment. They can take time, we all went through the waiting.
In the meantime, do all you can to improve your general health and wellbeing as that is going to help you no matter what.
Also, maybe try to concentrate your energy on providing support to your sister, as she is going thru the final stages - you only have this one chance to be there for her.

 

[lgelb]

If gripping the steering wheel is hard, Sam, you should not be driving. Don't take risks that could affect your sister -- or you.

 

[affected]

I totally agree, if you have trouble gripping the steering wheel, please stop driving completely, safety first as you will not be able to respond in an emergency situation.

 

[KimT]

Sam, I know the wait is awful. Some of us went through months and months of limbo and you're right, there are different presentations. Even though I had good grip strength at the time, I chose to let a friend drive me. You might want to consider not driving if your grip strength is poor.

Also, I'm so sorry your sibling has ALS.

 

[Sam Sam]

Thank you. She’s really struggling. It is sad. My deal is odd bcuz my symptoms keep changing. The constant is the leg soreness and stiffness. I feel hip and pelvis hurt at times. Upper back pain. Arms smart sore some days. Getting out of bed isn’t easy. Feel like a board. But the unknown is the worst. You nailed it. I just want my visit to nurology. And getting one scheduled is seemingly difficult