NeuroTalk Support Groups - Do You Know What's Wrong With Me?

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- - Do You Know What's Wrong With Me? (https://www.neurotalk.org/peripheral-neuropathy/231622-whats-wrong.html)

That's quite low, but glad you're supplementing. Did you retest to confirm that (i.e., the increase in D levels)? I presume you did. My ANA was normal too, but given symptoms, they will do a lip biopsy (appointment in the spring). As En Bloc on here will tell you, many test negative - she is still negative - but have Sjogren's. Not that you have that, but just FYI, since a negative ANA but positive lip biopsy are not uncommon. I've had two negative ANA panels. I also had quite low vitamin D, though not as low as you.

Quote:

Originally Posted by iamfrustrated (Post 1195880)

@DavidHC ANA panel was clear. Vitamin D was super low (4.9), but I've supplemented and got back into normal range.

@SylvieM Although I do have flat feet, a few doctors have told me that they have seen others with feet just as flat without all of these other issues. They just prescribe orthotics, which help a bit temporarily, but aren’t really a fix. I have gotten work up done from a rheumatologist but it all came back normal.

@zkrp01 I have seen 4-5 different podiatrist. They are all essentially the same. They can give you pills, orthotics, braces, RICE, etc - but outside of those few tricks, all they have left is surgery. I’m told that my condition isn’t a candidate for surgery.

@Littlepaw Tarsal tunnel was mentioned but never confirmed. I have zero arch when I am weight bearing. I’ve tried all the conservative treatments without any results. I definitely did over use, no question about that. I just don’t know how to stop the pain.

@chris85 Well, I can only speak for myself, but strong medications just aren’t my cup of tea. Aside from feeling like a zombie, I also get stomach/chest issues from them. I definitely agree with you in that when some bodies get too stressed, they start messing up bad.

The squeeze chute

Quote:

Originally Posted by iamfrustrated (Post 1195660)

I have been to a number of doctors without any clear diagnosis. I will briefly describe my symptoms below and would greatly appreciate your thoughts:

I used to go to intense fitness/yoga classes 5-6 days a week. My left foot started acting up. I did RICE but it wouldn't heal. It felt a bit better a few months later but by that time, my right foot started hurting.

I was initially told tendonitis. I have flexible flat feet (very flat). The pain was mainly on the inside of my ankle (posterior tibial area). The pain on the inside is a strong ache with every step. Two months later, my toes started to hurt as well. There is some burning pain throughout.

My feet (mainly my right, a bit in my left) are always in pain and I don't know what's wrong. Doctors spend a few minutes with you and are of no help. Clean MRI, Clean X-Rays, Clean EMG/NCS. I recently had a different kind of NCS and it did show some hypoesthesia for a few nerves - which does happen in neuropathy.

The consensus is that its basically 'nerve related pain'. Tarsal tunnel, neuropathy, nerve pain, etc were all mentioned but never confirmed. Obviously the flat feet don't help. I refuse to turn into a zombie on medication so I've tried TONS of alternative treatments (most didn't work at all, a few helped but only temporarily).

I have done well for myself and would gladly pay ANY amount of money or travel anywhere to have my life back.

A few additional details:

- This problem is about 2+ years old.
- I am 26 years old, not overweight.
- I can't run, walking causes pain, sometimes there is pain even at rest.
- My knee, hip, lower back, etc have all been acting up since this started.
- I have had a handful of odd symptoms since this all started (dry eye, dry mouth, bald patches in beard, cold feet, cold hands, a bit of weight loss).

YOUR thoughts would be GREATLY appreciated.

That is where an animal is herded toward a narrowing environ just prior to entrapment. If you are unwilling to be captured and go on the drug regimin, there are other things to try first. IMO stop ANY trauma to your feet. Walking would be the limit. Epsom Salts foot baths nightly. Choose wide base trainer shoes and I don't know if you can stand any inserts but perhaps some arch support. I hope you can figure something out and not be herded into the autoimmine camp. Good Luck, Ken in Texas.

I'm not convinced it is autoimmunity, but you never know. Sometimes it seems a lot of exercise can trigger the nerves to go crazy in some part of the body, then it spreads, gets worse, can't get better etc. After a while I developed central sensitisation, which is what happens to a lot of chronic pain sufferers and you get pain in remote and unrelated places. Hey I hope they find it is an autoimmune disease, they are better treated than other neuropathies generally. My friend in work is in remission from her RA and she has a great life on the right medication, or drug regime. People stay in RA remission for 20 years or more on drugs sometimes. It's about where you draw the line with medication, the extreme viewpoints aren't usually sensible.