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DiscussionNeed some insight. Cannot see neurologist for 7 months.
Brain & Nervous System | Last Active: May 16, 2023 | Replies (20)Comment receiving replies
Hi @slyfryryeguy -- sorry to hear about all the neurological issues you are experiencing. Waiting and imagining the worst can be so stressful. It's interesting that it all started with an injury. I remember when my brother was a teenager, he hit his head really hard and that triggered an ongoing (although infrequent) issue with migraine headaches he had never had before. He never had any other neurological issues other than that.
Eight years ago, I was convinced I must have ALS when I suddenly started aspirating everything I was eating. I couldn't control the food in my mouth, would get muscle fatigue in chewing muscles and the food would slip down my throat before I was ready to swallow. I lost 25 pounds in a month after I virtually stopped eating and then went into afib. Doctors were concerned too. I was able to get in to see a neurologist about a month after that. Two neurologists (one a neuromuscular specialist) worked together to test me for ALS, MS and myasthenia gravis (MG). I had EMG, NCS, brain MRI and a special MG musk test. They ruled all those disorders out. In the end, they both determined it was related to another neurological issue I already had called HNPP. It's rare to have cranial issues with that, but I do. I still have the swallowing issues 8 years later and always will, but have learned better ways to deal with that.
Since my teens, I had neurological issues such as numbness, pins and needles, limbs going to sleep, various pain, muscle fatigue/weakness, massive fasciculations (100 twitches at a time), restless leg syndrome, muscle cramps, etc. At 21, they did testing and diagnosed me with peripheral neuropathy of unknown origin. It wasn't until my son had a lot of neurological issues starting as a teen and then loss use of the last two fingers on both hands that they did genetic testing and discovered he had rare HNPP (hereditary neuropathy with pressure palsies). His arm/hand issues started with a severe blow to both elbows (nerves are damaged easily with this disorder). His HNPP diagnosis now explained all my issues and note the hereditary part. He had nerve transposition surgery and regained use of those fingers. He gets a lot of muscle fatigue/weakness that comes and goes the same as mine does. If he lifts something heavy one day, his muscles can be very weak the next day. I can't hold a phone or book in the air to read it due to muscle fatigue and must rest them on a pillow. If I carry something heavy, my arms will then shake for hours. Lots of weird annoying stuff.
I'm sharing all this to illustrate how many different neurological issues can cause all these weird symptoms. You may just have had some nerve injuries from your falls or whiplash. Maybe they'll even go away eventually. It certainly sounds like you have some neurological issues going on, but they could be caused by a number of disorders other than ALS. My HNPP is very annoying, but it's not going to take my life. You're young, but so were my son and I when issues started. I'm now 64 and my son is 40. We're still here and enjoying life despite neuro issues.
It's hard to get in to see a neurologist as a new patient, but 7 months seems excessive. I agree with windyshores that you might call around to other neurologists yourself. A neuromuscular specialist would be ideal. I'm not sure what type of insurance you have. With an HMO, your PCP needs to refer you, but with a PPO, you can refer yourself. Keep the appointment you have, but check around for better options. HMOs usually have more than one neurologist in their group. With PPOs, your options are unlimited, just be sure the neurologist is in your PPO network. Do you have a teaching hospital nearby? They are the best for diagnosing anything unusual. I'm not sure if their wait time is better or worse.
Just know there are much less scary neurological issues that could cause all of your issues including benign fasciculation syndrome, benign cramp fasciculation syndrome, issues mentioned above and more. It sounds like your issues have maybe improved somewhat and that's very promising that it could all be temporary from the injuries. Nerves can take months to heal/regenerate. Be your own advocate to get into a neurologist sooner. Doctors are busy so you need to keep after them to get what you need in a timely fashion. Best of luck to you.
Replies to "Hi @slyfryryeguy -- sorry to hear about all the neurological issues you are experiencing. Waiting and..."
Hi,
Thank you for your reply and I’m sorry you’ve gone through that much for so long. It’s good to know there are many reasons that could be causing this rather than the worst and I really appreciate you taking the time to share. Im happy you and your son managed to find out what was the source of your issues and was able to get help. There are hospitals near by I had just always assumed I’d be waiting there for 12 plus hours since I wouldn’t be an emergency. However, 12 hours is better than 7 months. Thank you again for replying!