Need some insight. Cannot see neurologist for 7 months.

@slyfryryeguy

If I may be direct here, I think that waiting 7 months to see a neurologist is a waste of time. Then you'll wait again for testing or imaging and just drag out the diagnosis. It is better to see a spine specialist first. The spine surgeon probably has a preferred neurologist that they like to work with anyway. I saw 5 different surgeons over a 2 year time and got nowhere, only to be dismissed because they didn't understand my case and there was neurology testing too. When I got to Mayo, they repeated the neurology testing again because the need to confirm the results.

Find the very best spine surgeon that you can. If you can go to Mayo first, you will probably save a lot of time and find a surgeon who can figure all this out. The wait to get into Mayo (if accepted) is probably around 3 months, but they would have to answer that. Urgent cases get priority. I wish I had come to Mayo first, but I didn't know how difficult this was to figure out. I was also running up against surgeons who didn't want to risk their reputation on something that they thought was difficult with unpredictable results. No one wants that on their record. It was much easier to say that they thought I could have an inflammatory disease like MS and I was told that by a top level surgeon who said that a cervical fusion may not help most of my symptoms and he didn't want to put me through it... how "kind' of him to say that, but he was wrong. This surgeon did an epidural spinal injection as a diagnostic test and that temporarily took away ALL my pain symptoms, and then they gradually came back. He didn't understand the results, so he ignored the test. Apparently it was supposed to only help my arm pain, and leave the rest as evidence there was an additional problem and weed me out as patient. This is a possible predictor that funicular pain is present if it resolves all the pain temporarily. There is no diagnostic test to confirm it, except that decompression spine surgery fixes the problem, and in my case, that was true and surgery fixed everything.

Surgeons can be very selective about what cases they will accept for many reasons. Some reasons are honest opinions of not wanting to harm a patent, and some are selfish reasons that are more about their own fears of failure. I don't wish to bash doctors, and the best ones do put the patients needs first. That is why you want a surgeon who enjoys the challenge of a difficult case. My surgeon at Mayo wants the challenging cases. You will have to advocate for yourself and you need one who understands funicular pain. I found myself in the position of finding my correct diagnosis myself and then none of my doctors at that medical center would help me inform the surgeon who examined me. No one would point out his mistake and I was left without help. That is when I applied to Mayo, and I sent in a copy of the medical literature that I found asking if my case was similar to this paper and I sent it with a letter explaining that I found it because of his paper where I found the term "funicular pain". That gives control to the doctor who can evaluate it and decide, and my concern was heard.

After my whiplash, the drop foot did resolve in a couple months, but returned again later when I had bone spurs and a ruptured disc pressing into my spinal cord. I was working with a physical therapist at the time and she would realign my spine which improved my symptoms and the drop foot until muscle spasms brought it back because it shifted my vertebrae. It was about 20 years for my spine condition to progress to surgery after the injury. Each case is different, and the degree of injury can be different.

Here are some links. There are 2 stories about my surgeon at Mayo, and one of them is mine, and the medical literature that I found that described my condition of "funicular pain."

Sharing Mayo Clinic: Spinal surgery saves teen swimmer’s mobility
https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-spinal-surgery-saves-teen-swimmers-mobility/
Sharing Mayo Clinic: Using the Art of Medicine to Overcome Fear of Surgery
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/
National Library of Medicine: "Cervical cord compression presenting with sciatica-like leg pain"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
Would you consider an appointment at Mayo for a spine consultation? If you would answer yes to that, you may want to call the Mayo billing department to see if your health insurance is accepted at Mayo.
Billing can be found at https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance or call Patient Account Services toll free at 844-217-9591 Monday through Friday.

Then if you wish to continue, you may request an appointment at any Mayo Clinic campus with this link: http://mayocl.in/1mtmR63

If that isn't possible, you'll need to research to find a good spine specialist at a major medical teaching facility.

May I answer any questions for you about my experience as a spine patient?
Jennifer

I had quite a lot of cramping for a while, and the fasciculations were widespread. They would be in one area for a bit, then go to another, even in my scalp and eyelids. I had stiffness in the muscles as well. It gradually got better, and I only notice it occasionally now. It is really scary at first, especially when you have to wait so long to see the doctor. If you haven't yet, take a look at the BFS thread on this site. I think that will give you some encouragement as well.

Thank you again for your reply. It’s good to hear BFS can cause similar symptoms to what I am experiencing. I am glad you’re doing better now though. I guess my biggest concern is my cramping/tightness and foot pain is focused to my right side only. I get twitching kn many spots but my right leg and foot is experiencing other symptoms. I will check out the thread!

I am no expert but it sounds similar to peripheral neuropathy……. Als twitches usually do not start randomly…… what I have read your muscles weaken or experience spasticity then twitch for it to be Als

One other question, can BFS affect your abdominals, neck and face because I’ve had the odd twitch here and there in those muscles.

I have twitches in my rib cage, the sides of my knee cap and calf bone, my buttocks…. All one twitch and done…. Everywhere…. The twitch will pick a spot and a minute later move to another spot… never in a logical order…..

I’ve had the same muscle and spot twitch a few times in a row before it’s moved in somewhere else

It did for me. I even had twitches on my scalp. I had a lot of eyelid twitching and sometimes in my lip.

Sounds like you may have some neuropathy going on too!
However, I am not an expert. I think it's wise to get a Mayo doc as soon as you can!
This would probably shorten your waiting time to get In!
I don't know where you live.
I live in a rural part of MN with a Mayo Clinic Health System Clinic in town. They may be able to either see you for evaluation, or, refer you to a lager Mayo Clinic. E.g. Rochester.
Good luck! God Bless! Pat .

Don't know if this will help of not. My husband was diagnosed with transverse myelitis after over 100 various tests. He was sent to a neurologist at University of San Francisco. He ends up getting a final diagnosis from the rheumatologist. Sometimes it takes various specialist who sees something out of the tests. His diagnosis was corroborated by the third neurologist he saw. If you are near a university hospital I would suggest you look around and see where you can get in the fastest. We were concerned about ALS and MS Thankful it was not but since there is no treatment for TH all he really gained was a knowledge of what to expect from all the numbness ( from feet to chest and hands). Best of luck to you. God Bless.