Not getting any concrete answers

I've had right ball of the foot numbness too. Prolonged walks or driving, wearing ill fitting shoes and lifting too much triggers my R foot pain. I've attributed it to a lower back problem from years of work that required lifting. Also a newer diagnose of osteoporosis, which may well be a underlying cause. I did experience some scalp numbness back in April and the doctor I saw recommended experimenting (with different thicknesses) taking a towel, rolling it up and sleeping with it around my neck. This did the trick overnight. He also recommended a symptom diary, but the towel roll eliminated my numbness. This doctor also suggested a trial of alpha lipoic acid 600 mg twice a day. Thankfully I now had no need to take this. I had read online that some Australian providers do not advise this medication with thyroid conditions, which I have. I have beefed up my calcium intake, careful exercise, and will soon be on a medication to treat osteoporosis.

Most people carry their stress in their neck/shoulder area according an Alexander instructor I saw. I definitely do, so have continued Alexander lessons & I find them a lifesaver, but everyone seems to gravitate towards a modality that suits them best.

ty for your response and the tips. Is the alpha lipoic acid suppose to help neuropathy?

A trial of alpha lipoic acid was recommended for my presenting scalp numbness. It proved to be more along the line of a pinched nerve. For the most part it had been one sided and would last only about 10 minutes upon awakening. I went back and re-read the doctor's note, his diagnosis was simply (scalp) numbness. "Suspecting some night time postural vascular or nerve compromise." He did not utilize the word neuropathy.

I was seen at a teaching hospital clinic so there better be some research out there that validates use if the stuff (As they teach their students at this center in California not to recommend anything that has not been validated to death, I've learned over the years).

I am new to this site and trying to navigate effectively. I am trying to get some thoughts about my symptoms. We are trying to figure if my sx's are from cervical ddd, spinal stenosis, and spondylethisis at c 5-6 or MS. The burning pain Ive had on and off for 4 1/2 years is both my arms sometimes shoulders, back of neck less frequent the top of my head. Mostly off but on now for almost a year and has extended to palms of my hands and n/t to fingers. This past Feb I started to have lower body effects with the same feeling. Other sx's are muscle twitching at rest everyday and being off balance. Differing opinions with neurosurgeon wether to fix the neck. One MS consult so far and says no to MS despite new lesions on brain in May. 1 and 2mm in size. Previous brain imaging is neg for lesions. CSF neg but not enough to do WBC differential. In lots of burning pain despite pain meds. First cervical injection worked for 2 weeks, Everything gone. Second one didnt work. Sorry this is long but Im losing hope. Its been so long....Any thoughts would be greatly appreciated. TY

Hello @ralphysmom

It sounds like you have been struggling with some difficult symptoms for quite a while now. You seem to have had a lot of tests and seen a lot of specialists without getting an answer and a treatment plan. Many of us on Connect have had this experience and understand how frustrating this is.

If I were in your place, I think that I would seek a second opinion at a major medical center that is research-oriented and multidisciplinary. I'm thinking of a university medical school or a facility like Mayo Clinic. These health centers are involved in a lot of research and also see a lot of patients with hard-to-diagnose problems.

Do you live near such a medical center? Would you consider a second opinion?

Thank you for responding. I went to the Mayo Clinic in 2018 at the onset of this. I was dx'd with POTS but my sx's seem so much more than that with some sx's not applicble to POTS. Since then I have been told I dont have POTS from 3 different care providers. Maybe as time has gone on there would be more insight and a look at the characteristic and pattern of how it has evolved. I often wonder if I should go back but I dont know how that will be received.

@ralphysmom
A return visit is worth a try. Perhaps you could request a video visit, sending your reports and change in symptoms.

Persistence is important when you are having trouble finding a diagnosis. Have you had a lumbar puncture?

TY hopeful33250..that is a good idea. Yes, I feel I have but when you live in the middle of the Pacific Ocean it is hard. At that time they didnt allow video visits either. TY for the encouragement, truly appreciated. I have ten yr old twins that need me in their lives. I have had a lumbar puncture and clean both times but I think lack of enough CSF for the second. "Insufficent cells". Done in 2018 and this past May. I have been reading about where the lesions on MRI need to be located and the characteristics to be positive for MS vs other differential dx's. I wonder why they only image brain and cervical when it can show up anywhere down the cord.

If the injection worked the first time, did that have diagnostic significance?

I actually have some of the same symptoms and had an abnormal brain scan but also have spinal cord damage in neck and myelopathy that causes burning pain in neck and shoulders and sometimes left side of face. And spinal stenosis as well as fractures. Have nerve pain in hands and feet and legs feel funny after lifting. Also episodes of dizziness and nystagmus that was investigated for autoimmune reaction to cancer.

I guess my point is that these symptoms can be caused by many things and often it is many things all at once, which makes diagnosis for insurance diagnostic codes difficult! I do have a lupus diagnosis, but I think the reality is less defined. Is your ANA positive?

I did have treatment for Lyme which lessened the burning paresthesias, and I did an elimination diet with a doctor that resulted in giving up dairy, gluten and a few other foods. That helped more than I expected.

My daughter is always after me to pursue MS diagnosis. My eye doctor questioned why I had never been diagnosed, and my rheumatologist said I was "MS-y". But I ask myself: what would be the end result of that diagnosis? In this time of COVID, or any time really, I would hope to avoid immune suppressants. I cannot take prednisone- it affects my heart. So what is the point?

Have you tried gabapentin or Lyrica or any other treatments for pain? Have you seen pain management or PT? I hope you can find help through physiatry/pain management or even alternative therapies. It is a long road and many on here have been on it.

One other thing: tai chi helps me a lot! Just as this experience of pain and sensations can have many causes, I think the therapeutic response has to be from many directions at once. Anything that can even lessen it around the edges, so to speak, is a plus.

@ralphysmom I had this experience too from your comment:

"Had 2 weeks of 100% relief with cervical steroid inj but the second one didn't work. I welcome any thoughts"

I had a cervical steroid injection done as a diagnostic. It took away all of the body pain I was having everywhere for 5 days from my cervical stenosis. Then slowly symptoms began to return. The surgeon at that time ignored those results and I don't think he understood them. He completely missed the funicular pain which causes this phenomenon of referred pain all over the body from spinal cord compression. I did have new pain from the injection that caused sharp pains in my hand that took a few months to go away. This is a clue, and the same one I had that lead me to conclude I had funicular pain, and it was scaring surgeons out of helping me. I was right because the ACDF decompression surgery fixed all of it and there is no diagnostic test for funicular pain.

This was the medical literature that was a turning point in my life.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
I saw that you were seen at Mayo in 2018. That's a plus. It will be easier to get in for a spine evaluation if you wish to seek an opinion there. Dr. Jeremy Fogelson at Mayo Rochester understands funicular pain and this was the reason I came to Mayo. I also had some complicating symptoms from Thoracic Outlet syndrome that caused nerve compression in my neck and shoulder area in addition to having spinal cord compression. You don't have to see a lot of changes on an MRI for there to be myelopathy and to have symptoms from it. My MRI showed I was out of space around the spinal cord and did not show changes to the spinal cord itself, and I had lots of pain symptoms. You can send imaging in and ask Dr. Fogelson to review it. Mayo does not charge for reviewing records when you apply to be seen for a consult. You may also be able to get a referral from your provider at Mayo who saw you in 2018. If you wanted to request an appointment at any Mayo campus, this link will get you started.
http://mayocl.in/1mtmR63
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
Here is my story:
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/