Need some insight. Cannot see neurologist for 7 months.

...sorry I cannot offer any suggestions but wondering if when you suffered whiplash and the fall, did you take a lot of painkillers or other meds? or meds for other illnesses. ... reason is i was on a quinolone drug for bladder infection just 2 weeks, and ten days after last pills got neuropathy in feet and hands and lower legs and lower arms and esp. bottom of right foot and right cheek numb... so not twitching but still from meds; just an idea. hope this eventually goes away for you... pain is pain but sometimes other things like twitching, stiffness, numbness etc. can affect our health/happiness for sure and I also had to wait a long time to see specialist and then the stress builds up: hopefully someone here can help, J.

Have you considered a Lyme test? Has your PCP offered any tests, say, for autoimmunity, or thyroid?

Concussions can have strange effects.

If the neurologist is 7 months away, is there anyway you can get a cancellation, or your PCP can get an appt., or perhaps a clinic? Another neuro? Seven months is too long esp. when you feel worried about your symptoms.

I’ve done countless blood tests, so many that I’m sure any test a regular PCP can requisition he’s done. As for another referral I’ve asked and he said he would but I didn’t get a vibe he was honest about it. Also had a brain MRI in March and it was “clean” has white matter lesions but that was consistent with head injuries.

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.

Hello slyfry. I'm certainly not a doctor, but your symptoms sound a lot more like benign fasciculation syndrome than ALS. I have BFS as well - mine following a viral infection. Any trauma or stress to the body can cause it. From what I know of ALS, it typically starts in one area, and fasciculations aren't widespread all over the body, moving from place to place. When my BFS started, it was much worse than it is now, 2 years later. I had all kinds of strange sensations and numbness, primarily in my feet. Cramping and widespread fasciculation as well. Keep us posted on how you are doing. My suspicion is that you will continue to improve.

I agree with the previous comments. In addition, I wonder if you might be deficient in minerals like magnesium. Do you live near a university or big town? My husband wasn’t able to see a neurologist near our home for at least a year, but we were able to see a neurologist at a teaching hospital several hours away. Best wishes to you.

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!

I had no idea BFS could cause cramping. My twitching is mostly in the right leg still but it is appearing in the other leg frequently alongside areas in my torso like my abdomen and back somewhat frequently. My biggest concern isn’t even the twitching now it is the minor ache my right leg is feeling and bottom of foot pain/ache. I am hoping this does subside, just hard not knowing for sure. Thank you for replying as that does make me feel better there is another diagnosis this could be. I know ALS does not cause tingling or numbness and I’ve felt that on the occasion so I’m holding on that for hope.

Hi @slyfryryeguy — when I mentioned teaching hospitals, I really meant the medical offices that are associated. For instance, if you look up UCLA neurology you’ll see they have a neuromuscular clinic associated with the hospital. Check for neuromuscular neurologists associated with your nearest teaching (university) hospital or research clinic like Mayo. 🙂

@slyfryryeguy Hello and welcome to Connect. I think I can help you understand what may be going on as a possibility. I'm not a doctor, but I am a spine surgery patient and I had a similar experience with symptoms to what you are describing. First, I have to say that I am shocked that your doctor told you to try taking magnesium when you are describing neurological symptoms. Did you tell this doctor about the whiplash and concussions? That is a key piece of evidence for diagnosis.

You may have done what I did after a whiplash. I told myself I was going to be OK. I had an HMO insurance plan at the time and all my primary care doctor did was write down if my neck stiffness and pain was getting better and did no further testing. It was a long time ago. You had 2 events that jarred your spine. You are reporting drop foot, difficulty walking, weakness and fatigue in your legs. Twitching muscles. I remember thinking it could be ALS, and didn't even consider that a whiplash could have injured me and caused this. I remember that my leg pain changed sides, and when I took a step, my foot slapped the floor which I could not prevent. I reported that to my doctor, but that didn't raise eyebrows, but it should have.

Laying down and having your arms and legs go numb is another huge clue to what may be wrong if you understand how the spinal cord shifts inside the spinal canal with changing body positions and the effect of gravity and what happens during a whiplash. It's like cracking a whip and snapping the spine in changing directions quickly and it stresses the discs that are holding the bones of the spine together. If there is enough damage, the discs can weaken, crack, bulge or herniate and start spilling the jelly like stuff inside. If that jelly has spilled out, it causes inflammation and initiates bone growth next to it to try to stabilize the spine. Imaging the spine in different positions of standing vs laying down or seated can show very different pictures of vertebrae that are slipping past each other instead of maintaining a neatly stacked position. There could be multiple places of laxity in the spine, a whiplash affects the neck, but there may have been damage to the spine in the lower back too. Typically with leg related symptoms, that is where doctors will look for trouble. If there is enough sliding of vertebrae, it can contact or put pressure on the spinal cord, and that is pot luck on what will be affected. The spinal cord is a big bundle of all the nerves between the brain and the body that control everything. Nerves leave at levels all along the spine, but in the neck, everything must pass through there for the entire body. Remember that the spinal cord is supposed to move inside the fluid filled spinal canal, so it may contact different places at different times and change where your symptoms are.

Here is where understanding spine injuries gets tricky and 5 surgeons missed my diagnosis in that they could not relate my symptoms to my imaging of my neck. I had pain all over my body, twitching and it changed positions, uneven gait when walking, difficulty emptying my bladder, weakness in arms and legs, loss of coordination of my arms, headaches that were usually worse on one side. Pain in the bottom of my feet that made it difficult to press the accelerator and drive which would start tingling and pain in my foot. If a nerve is compressed where it exits the spinal cord between the vertebrae bones, it is very predictable where pain and nerve symptoms will be felt. If spinal cord compression is present, it can cause pain anywhere in the body and pain that can change locations. That is what confused every spine surgeon before I came to Mayo. I found medical literature that described a case like mine because I was reading literature authored by a Mayo neurosurgeon, and I looked up a term I didn't understand which was "funicular pain". That is pain all over the body caused by spinal cord compression in the neck. I wasted 2 years seeing surgeons who wouldn't help me because they didn't understand this, and there was not a lot of literature about this "rare presentation of symptoms" 6 years ago when I had my surgery.
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