On a undiagnosed path, someone suggested ALS.

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New member
Dec 13, 2020
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Thank you for taking the time to read my post and offer any advice/opinions you may have.

I’d like to say that ALS wasn’t really on my radar until a family member that is a nurse mentioned it, but given my issues and the amount of “rabbit holes” I’ve been down for almost 2 years I now worry.

My issues started about 2 years ago. I noticed I was having a lot of cluster headaches and vision issues. Went to the eye dr, suggested some dry eye and lead me down a rheumatologist path. Long story on that end- I was diagnosed with a positive ANA and Ro antibodies so she says Sjögren’s. At the same time my pcp (that also found the rheumatologist) and I talked about some odd sensations/numbness in my right leg. MRI to rule out MS done and multiple tests including syphilis were done. When it first started I had typical MS symptoms and thought for sure that was it, nope. I started to have some pain in my head/neck and right hand and arm trying to lift my son where it just felt like I couldn’t do it.

I went to a neurologist at the recommendation of the ER that said I had fibromyalgia after one visit and sent me on the way. My pcp, rheumatologist, and second opinions laughed at that diagnosis. I moved and had to switch pcps. I was then diagnosed with Lyme, although not cdc positive so most drs won’t agree with that, my 5 year old daughter was also tested and she was off the charts cdc positive. During that time I had extensive tests done at the request of the pcp: mammogram, sleep apnea, holster monitor, thyroid panels and ultrasound, bladder ultrasound (due to repeated UTIs), ct scan of my chest, a ct scan of my head when I had awful pain, and my ecgs than I can count. I also had a terrifying summer of a CT scan of my abdomen said I had a lesion in my colon. Colonoscopy said i was fine. So as you can see
My rheumatologist basically said well Sjögren’s doesn’t cause your pain and told me it was in my head. Every doctor I went to was nice and also disagreed with that.

off to a second rheumatologist which has been awesome. He confirmed it was real, did more blood work which continues to say I may have an autoimmune disease, but said some of my symptoms below could be from something else and sent me to a second neuro.

My fingers, especially in my right index finger and things just felt off. Sometimes they felt swollen, or hurt. I began to have a lot of tightness in my neck. Sometimes my ear will fill full and have a numb like sensation. My face, primarily right side will also good numb/tingle or it will feel like the muscles on that side are tighter. Bell’s palsy was ruled out by a neurologist after my pcp said it could have been. My right leg will also feel tight. Some times straight down to my feet. Sometimes I will get awful aches and pains in all my limbs, which I understand likely points away from als. Most days I feel like I can’t move without causing some sort of pain later. There have been bouts of itching a few times all over my face and neck. Insomnia is a huge problem. Ambien barely helps. I don’t have twitching very often.

I can still do most things. Just notice it’s more difficult or I hurt after doing some things. A lot of times my right shoulder will Burn or have a cold sensation. Which I would say started at the beginning of this mess. My right leg lifting at times can feel difficult, but I can walk on my heels and toes. I get the hiccups frequently and have noticed a yawn a lot more than I have in previous months .My right index finger has probably lost the most use which I noticed when I was trying to make a wreath. When I did that wreath I tried to push through and by the end my arms hurt/heavy, and my shoulder blades were killing me. The next day and half I couldn’t do anything. This week I’ve had the numb/just got off a roller coaster vibration like feeling between my toes on the right side. 90% of the time it’s my right side of my body giving me issues.

the new neurologist is doing a mri of my brain and cervical spine. To again rule out MS and his paperwork says I have cervical radiculopathy. I have not had the cervical spine done yet. The brain mri when in the machine the nurse reported the Cleveland Clinic radiologist reviewing my MRI also requested specific imaging of my ear. We did an emg and the dr didn’t say much. The NCV part was done by the tech and said “that looked good” when he came in the room, but didn’t say much about the emg portion. During his dictation I heard carpal tunnel possible cervical rad. Which I already gathered from his notes. During a physical exam he noted I didn’t have any myopathy. I see him again in about a week. He’s the head of emgs in a pretty big neuro department so I suppose that’s pretty positive!

He put me in physical therapy. During that assessment the PT said I failed the cervical rad. Tests, but he cannot with movement get my body to react or repeat the sensations I struggle with. My range of motion is pretty good, he said I was pretty strong, so that’s all good, Or course the neuro only referred for my neck so we have had minimal discussion on leg.

Again, ALS wasn’t on my radar, but an aunt who is a nurse started talking about it and how I originally started out just having odd feeling, not really numb, but felt weird to use, and no other tests confirming things she asked me. I feel like I have several things that point away from ALS. I just thought I would get an opinion from people that have actually experienced this.

I have sought out counseling as even though I’m not terrified about als, I am aware with all the different medical issues that have been given to me, taken away, and tested for it’s a lot for anyone to take in and process what could be happening. I have a good support system, but it’s also difficult for them since this path has just spiraled to many drs having differing opinions and false “alarm” tests.

Thank you for your time. I greatly appreciate your help and taking a look at this mess of a situation for me.
There is absolutely nothing there that sounds like ALS. Nothing. you are describing a lot of sensory feeling issues which are not ALS. Your emg will doubtless confirm it. With all due respect to nurses I would not pay attention to their opinion. I actually had a friend in an RN program. They got 1/2 page on ALS and half of it was wrong.
Thank you. I was really upset when she said it and suggested it, but since the path I have been down has been chaotic and I just want answers it got in my head. Thanks so much for taking your time out to respond.
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