Meowwethy
New member
- Joined
- Oct 15, 2023
- Messages
- 5
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
- City
- NYC
Hi guys. To begin, thank you so much for giving me a space to discuss my concerns. This was truly my last resort as I don’t find it fair to post without an official diagnosis but at the same time, I continue to be neglected thrown around by my medical providers so I have no where else to turn. So thank you for your time & willingness to help me.
It all started in December ‘21. I was sitting in class when I felt muscle twitches breakout on my back but I didn’t know what they were I actually thought I was imagining them. They persisted and by February ‘22, they were full bodywide muscle twitches. At that same moment in Feb ‘22, I broke out with myoclonic jerks- i would have jerks/ tics SO severe (every few seconds as I tried falling asleep) that I was literally unable to sleep no matter how many Benadryls I took, etc. I wound up going to the hospital after being stuck awake nearly three nights in a row. I also started experiencing terrible internal vibrations throughout my body and into my head, that’s the best way I can describe them. I would wake up to myself experiencing them, thinking I was seizing or something. I then broke out with terrible vertigo which impaired my ability to drive.
By the end of Feb ‘22 I saw my first neurologist. He did an EEG on me (came back clean) and ordered brain MRI and full spinal MRI (cervical, thoracic, lumbar). Brain came back clean but my entire spine was full of arthritis/ herniated discs, stenosis, etc. He also did an EMG which showed chronic denervation is six muscles, three in each arm at the C5-C6 level. He said since I had a herniated disc and stenosis there that it was considered a chronic bilateral radiculopathy. He blamed every single one of my neuro symptoms, especially the twitching, on my spine. Also please note that I had noticed slight muscle atrophy in both of my arms/ biceps at this time but he said that was due to the pinched nerve at c5-c6. He also did a TM Flow test which showed small fiber inflammation (I’m assuming this means SFN) in my left foot.
He insisted the abnormal emg didn’t indicate als but I got nervous with all of my twitches so I went for a second opinion at an als specialist in Hackensack, NJ. I kid you not, after just two sentences of me speaking he said “well it could be als you know right?”. That frightened me because I thought als was an exclusion diagnosis/ he said this without even looking at my EMG, so I didn’t go back.
By July ‘22, all of these symptoms were still present but the bodywide twitches were intensifying and specifically getting their absolutel worst in my left thigh. I then started getting muscle pain/ aches in my left calf. By the end of the summer my entire left extremity started wasting away. By January ‘23 my entire left extremity looked and felt half the size of my right- with even my left butt cheek showing a massive dent inwards, so I decided to go back to my first neurologist. I explained to him that my left extremity was atrophying and that it came with muscular pain/ bodywide twitches still. So he decided to repeat the EMG- this is now a year apart from the first one. This time, my left arm came back completely clean (which makes it seem like it improved) but my right arm still showed denervation at the original three c5-c6 muscles plus one of the muscles at c6-c7. This didn’t make any sense because I do not have herniated discs at c6-c7. Shockingly, my entire left extremity came back clean as well, even though he noted moderate atrophy throughout it. Again he blamed everything on my spine issues.
I went on to see a neuromuscular specialist due to all the atrophy and twitches, but he wasn’t the most sane doctor I’ve ever been to and it’s too long to get into. But I’ll shed some light on how horrible it went by letting you know he told me “I’m 96% positive whatever you have is not curable or treatable so it’s not worth diagnosing.”
I then went to a neurosurgeon since my original neuro continues to blame every last symptom on my spine. The neurosurgeon had me sit down and look at my spine images with him. He said my spine is rather healthy and that there’s zero chance my spine is causing and of these problems. He said he agreed with the one neuro I went to to that it could be als…he said it could be als or another neuromuscular disease.
My atrophied leg is now becoming weak after all this time. In fact yesterday I was nearly positive it was going to stop working all together. It is getting increasingly hard to use it and it continues to atrophy. Worst part is, now my entire right extremity has that muscle pain/ aches throughout it in random patches- so I worry that atrophy is finally starting there since that’s what happened with my left. Twitches (which have never stopped since Dec ‘21), pain, then atrophy.
So as you can see, I ended up here because I can’t get a real diagnosis from ANY of my doctors. I am just sincerely begging at this point for any and all help that you can offer. My prayers are with you all throughout this awful illness. I thank you all for reading this long dreadful story. All my best!
It all started in December ‘21. I was sitting in class when I felt muscle twitches breakout on my back but I didn’t know what they were I actually thought I was imagining them. They persisted and by February ‘22, they were full bodywide muscle twitches. At that same moment in Feb ‘22, I broke out with myoclonic jerks- i would have jerks/ tics SO severe (every few seconds as I tried falling asleep) that I was literally unable to sleep no matter how many Benadryls I took, etc. I wound up going to the hospital after being stuck awake nearly three nights in a row. I also started experiencing terrible internal vibrations throughout my body and into my head, that’s the best way I can describe them. I would wake up to myself experiencing them, thinking I was seizing or something. I then broke out with terrible vertigo which impaired my ability to drive.
By the end of Feb ‘22 I saw my first neurologist. He did an EEG on me (came back clean) and ordered brain MRI and full spinal MRI (cervical, thoracic, lumbar). Brain came back clean but my entire spine was full of arthritis/ herniated discs, stenosis, etc. He also did an EMG which showed chronic denervation is six muscles, three in each arm at the C5-C6 level. He said since I had a herniated disc and stenosis there that it was considered a chronic bilateral radiculopathy. He blamed every single one of my neuro symptoms, especially the twitching, on my spine. Also please note that I had noticed slight muscle atrophy in both of my arms/ biceps at this time but he said that was due to the pinched nerve at c5-c6. He also did a TM Flow test which showed small fiber inflammation (I’m assuming this means SFN) in my left foot.
He insisted the abnormal emg didn’t indicate als but I got nervous with all of my twitches so I went for a second opinion at an als specialist in Hackensack, NJ. I kid you not, after just two sentences of me speaking he said “well it could be als you know right?”. That frightened me because I thought als was an exclusion diagnosis/ he said this without even looking at my EMG, so I didn’t go back.
By July ‘22, all of these symptoms were still present but the bodywide twitches were intensifying and specifically getting their absolutel worst in my left thigh. I then started getting muscle pain/ aches in my left calf. By the end of the summer my entire left extremity started wasting away. By January ‘23 my entire left extremity looked and felt half the size of my right- with even my left butt cheek showing a massive dent inwards, so I decided to go back to my first neurologist. I explained to him that my left extremity was atrophying and that it came with muscular pain/ bodywide twitches still. So he decided to repeat the EMG- this is now a year apart from the first one. This time, my left arm came back completely clean (which makes it seem like it improved) but my right arm still showed denervation at the original three c5-c6 muscles plus one of the muscles at c6-c7. This didn’t make any sense because I do not have herniated discs at c6-c7. Shockingly, my entire left extremity came back clean as well, even though he noted moderate atrophy throughout it. Again he blamed everything on my spine issues.
I went on to see a neuromuscular specialist due to all the atrophy and twitches, but he wasn’t the most sane doctor I’ve ever been to and it’s too long to get into. But I’ll shed some light on how horrible it went by letting you know he told me “I’m 96% positive whatever you have is not curable or treatable so it’s not worth diagnosing.”
I then went to a neurosurgeon since my original neuro continues to blame every last symptom on my spine. The neurosurgeon had me sit down and look at my spine images with him. He said my spine is rather healthy and that there’s zero chance my spine is causing and of these problems. He said he agreed with the one neuro I went to to that it could be als…he said it could be als or another neuromuscular disease.
My atrophied leg is now becoming weak after all this time. In fact yesterday I was nearly positive it was going to stop working all together. It is getting increasingly hard to use it and it continues to atrophy. Worst part is, now my entire right extremity has that muscle pain/ aches throughout it in random patches- so I worry that atrophy is finally starting there since that’s what happened with my left. Twitches (which have never stopped since Dec ‘21), pain, then atrophy.
So as you can see, I ended up here because I can’t get a real diagnosis from ANY of my doctors. I am just sincerely begging at this point for any and all help that you can offer. My prayers are with you all throughout this awful illness. I thank you all for reading this long dreadful story. All my best!