Well, for the first time in my life, I have developed the worse health anxiety and I cant stand how hard it is to get out of this mess. So I find myself here hope to find some help and hope. Sorry for the long post. I have read the "you don't have ALS" sticky.
I am a 45 y/o male who was healthy and active up into about a year ago when I start having symptoms. There is no family history of any health disparities and no MND history. Here is a timeline of symptoms and treatments.
In September of last year, I strained the lower left side of my neck and when doing stretches (especially tilting head to the right) I would develop pain over my left elbow. Pain would last a few minutes and resolve. I first thought this was strange but if I didn’t tilt head to right, no elbow pain. As days and weeks went on, I kept stretching neck but now there was pain not only over the elbow but to the back of my left hand that would at times radiate into my thumb, index, middle finger and if the pain was bad enough, those three fingers would seem very clumsy but would never drop anything. The strangest thing is on the days when I would have pain in elbow and hand and fingers and feel the clumsiness, I would go to bed and all the pain and finger issues would resolve. So needless to say I didn’t think anything of it and there has never been any numbness or tingling either. Over the next 12 months, the pain will start in my elbow, isolate between my ring and pinky finger and there is pain over the triceps and front of left shoulder. Again on bad days, left hand will feel clumsy and weak but I will/have never dropped anything and all symptoms will resolve by the next day. Update, over the past month or so, the hand pain has now become almost daily and both hand have become to feel like they are starting to feel stiff and cramp.
End of Feb this year, 2 days after doing some yard work, I woke up with this weird, how to describe it, pain and what felt like a muscle strain/swelling feeling to the front right thigh. Every time I would walk, my thigh would feel swollen, tight, and weak and the pain seemed to radiate directly down the outside and the middle of the thigh ending at the knee. Tried every known stretch to stretch out the quads and IT band but no amount of stretching would stop this strained muscle feeling and pain. About a 1.5 months after the onset of symptoms, my left thigh starting having the same stiffness/strain and weakness feeling but not as bad as my right and I started feeling tightness over the right calf. Again, no amount of stretching will stop the symptoms and there has never been any cramping to the calfs or quads. When stretching the muscles don’t ever feel tight or strained. Over the course of the past 8 months I have developed off and on fasciculations to both calfs and quads, upper arms and the right quad has been feeling weaker and weaker every week but I have never tripped or fallen since the onset of symptoms. My latest scare and increase in my health anxiety has been I have developed pain to the bottom on my right foot which I have never had since the onset of my symptoms. I hate this foot pain as it just absolutely scares me like something is progressing
In the middle of all trying to find answers as to why I was not getting symptom relief to my arms or legs accompanied with weakness and fasciculations, of course the path led to PLS/ASL. And the rabbit hole was dug and the anxiety started.
In July, started noticing the muscles only under the left side of my jaw feeling different than my right. It was a feeling inside my mouth like the floor of my mouth on the left side had dropped which seem to effect my tongue (seemed weak, burning feeling) which would affect my speech and swallowing to me like I was slurring my words and having difficulty getting words out and my swallowing seemed to be slower. My wife has always told me I don’t slur my words, no problems drinking or eating, no coughing with eating or drinking. I notice that the tongue issue seems to worsen in times of stress but will never fully resolve. When the tongue issues started, I noticed I would thrust my tongue towards my front teeth while sleeping so I thought I had strained the suprahyoid muscles.
As far as treatment: March 2023 I did PT on my neck and arm which did not do much, PT thought it was a facet issue in the neck. Tired dry needling which helped some but did not fully treat symptoms
May 2023, I had and EMG of both arms and legs which was clean. No bulbar muscles.
June had MRI of C-spine and Brain which was neg for any stenosis or MS.
Saw Neurologist in Aug who couldn’t give me any answers for my neck/arm/hand pain/weakness as well as my non improving right/left quad pain and weakness. Exam was clean, no hyper reflexes or clinical weakness. She told me to make sure to drink electrolytes and see a dentist for my tongue issue. When I asked her about my fear of ALS she said, “you don’t have any characteristics of ASL” and wanted to repeat the EMGs in 6 months. When I told her about my tongue and mouth issues and asked about doing an EMG on my bulbar muscles she said she didn’t see a need at this time but would refer me to a neuromuscular neurologist if I wanted, currently in the process of getting in with a neuromuscular neurologist at a local university medical clinic for a second opinion on all my symptoms.
Sept: Saw sports medicine MD who was stumped about my arm/had issues, thought it maybe radial cubital tunnel syndrome, tried dextrose injection to separate muscles from nerves, no improvements after 1 month. Have follow up next month
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Saw ENT about tongue issues and he found nothing wrong. On exam he told me that he saw symmetric raising of the posterior tongue with clicking and he couldn’t explain my symptoms.
This month had full bloodwork up which was neg for Lyme, MG, RA, ANA, thyroid issues and all muscle inflammatory markers were neg. Also had MRI of L-spine which showed no change to my herniated disc at L5-S1 with S1 nerve root impingement on my L side only.
To be honest, none of my symptoms make any sense nor do they seem to fall into any MND category and I keep baffling specialists. I have never had any falls or dropping of objects since the onset of symptoms, no facial/tongue fasciculations, just continued pain/weakness/muscle tightness feeling to both quads (R>L) with walking (no symptoms with sitting) weird feeling of the muscles to the floor of my mouth left side. From all the research I have done on ALS, it usually doesn’t start as abrupt onset pain in the elbow or thigh pain. I have a repeat EMG in a couple of weeks but the personal reassurance has been hard. Please help!!!! Any advice??
