Concerned I have ALS

[Louise1404]

Good morning,
Thank you for taking the time to read my post.
I am a 44 year old female and am concerned I have ALS. 3 months ago I noticed a pain down my right arm into my hand, I assumed this was nerve pain. I also had pain in the soles of my feet (bilaterally) and slight pins and needles which I thought was due to increasing my running/walking. 2 weeks later I experienced a similar pain in my left arm, not as intense though. I finally got the dr to send me for an mri as I thought it may be coming from a disc protrusion in my neck. My mri came back clear.

3 months later and i still have pain in my arms, hands and feet and now thighs and what feels like weakness in my thumbs and forefingers on both hands although i am able to grip, fine motor skills like scrolling on my phone cause my muscles in my hand and forearm to feel fatigued and sore.

I have been back to the dr so many times and they keep putting it down to anxiety.

I also had a blood test for peripheral neuropathy, due to the pins and needles in my feet, which showed a positive ANA. Due to this i asked the dr if it could be MS and he sent me for an MRI, which came back with multiple white matter lesions of unknown clinical significance, but it didn’t fit the profile of Ms

2 weeks ago I started having muscle twitches in my R arm, r leg, shoulder and abdomen. I also have a twitching in my L lower eye lid that is almost constant and has been for the past two weeks.

I do have a neurology appt for tomorrow but like everyone on here I am worried sick and can’t seem to do anything except worry and plan what the rest of my life will be like.

A little back story, I lost my husband to lung cancer two years ago and have a 15 year old son. I don’t really have any one suitable to look after him if something was to happen so I guess that is worsening my anxiety.

 

[ShiftKicker]

Hi Louise-

So sorry you find yourself here and wondering about your symptoms. From what you have written, your symptoms point away from ALS. Please make sure to read here: Read Before Posting, which addresses sensory issues and the difference between a feeling of weakness and diagnosed clinical weakness. I am sure you will find it reassuring with regards to ALS.

Your best bet is to discuss with your neurologist, as they can provide you better answers than Dr Google or strangers on the internet based on their clinical observations during exam.

 

[Louise1404]

Thank you for your reply. As many people have done. I have read so much on google I am so confused, even as a health professional (I’m embarrassed to say) I can’t decipher what are actual symptoms as there is so much conflicting information out there. That’s probably why we shouldn’t try and self diagnose. Thank you again

 

[lgelb]

Sorry about your troubles, Louise. If your ANA remains high, I would see a rheumatologist. If neurology and rheumatology don't have anything to report, I'd get worked up for systemic illness by a good internist.

 

[Louise1404]

I attended my neurologist appointment and the neurologist found no clinical weakness, obviously I am happy about this. I told him about the twitching of my face, arms, legs and back and he checked my back and said they can normally see it? I found this strange because my twitching comes and goes, and can be one or two twitches, very rarely any more but happens all throughout the day. I told him about the constant pain/cramping in both hands and feet, as well as the fact that when I use my hand sometimes I can feel the muscles in my arm hurt and feel tired. I can’t really use my hands without them hurting. He told me that ALS isn’t a sensory illness therefore he didn’t want to do any other tests. I thought cramping was a symptom of ALS. I’m so confused and unsure if I should be satisfied with his assessment. Any advice would be appreciated

 

[lgelb]

I will repeat my suggestion that you see a rheumatologist to rule out those kinds of disorders. I can't say that the neurologist was wrong to conclude that your lack of clinical weakness puts neurologic disorders below higher-probability explanations.

 

[Louise1404]

Thank you for your response

 

[Louise1404]

I apologise in advance for writing this if it is frustrating or upsetting to anyone.

Obviously like everyone here I am terrified of ALS. I am wondering if I should outright just request an EMG before requesting a rheumatologist appointment as stated above?
I cannot use my hands at the moment without a crampy pain in the back of my hands and palms. I know from the stickies thay ALS isn’t sensory but I also read that cramping pain was someone’s first symptoms before weakness. Both my thenar muscles below my thumb also burn when I use my hands.
The soles of my feet (bilaterally) have the same type of crampy pain.
My lower lid has also been twitching non-stop for approx a month and I am still having twitches in both legs arms, neck and shoulders.
I go to the general practitioner on Wednesday and am just not sure what to ask for.
Any advice would be appreciated x

 

[Nikki J]

Not sure what you mean by crampy pain. My experienceand understanding of ALS cramps are sudden immobilizing cramps that of course hurt. Like a charlie horse. They also are not generally all over especially at the beginning but follow the weakness pattern until the muscle is too weak to cramp

You have seen the neurologist. They didn’t feel moved to order an emg.

 

[Louise1404]

I am sorry, I thought I read the cramps came before the weakness in the post I read. The cramps with the twitching were concerning me. Thank you for your reply I appreciate the info. I will stop posting now.