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Old 02-15-2021, 10:31 AM #1
gailveronica gailveronica is offline
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Default Worsening Pain - Help Point in Right Direction?

Hi, Everyone:

I've posted here before, a few different times (sorry, I can't figure out how to delete those threads!). I'm 38 years old and I really need to know where to go and what to do with all this. I get very scared of amyloid, paraneoplasm, etc - when I look online I find the worst case scenario and I can't control my anxiety.

I have one foot that has nerve pain / numbness. Here is a brief summary (all pain/numbness is in left foot):

October 2018: tingling in left leg, front of thigh/knee/shin (this continues through present)

February 2019: brain MRI
-MRI results: some white matter lesions, can coincide with migraine, initial MS concern but that has been ruled out as of June 2020

April 2019: lumbar/sac MRI
-MRI results: L5-S1 bulge, not impinging nerves, also L5-S1 signs of degenerative disc disease
-neurologist said I'm fine, sent me on my way

October 2019: nerve pain outside left heel, tinel's sign positive, ONLY hurt when stretching heel or dorsiflexion
-orthopedist ordered xrays (normal) and EMG/NCV (mostly normal, a bit of tarsal tunnel - but that's not the side of the foot that hurt)
-orthopedist ordered MRI but insurance denied, no MRI obtained
-orthopedist called Sural Neuritis, said I can live with it

December 2019: pain dissipated, turned into numb spot, quarter-sized, left heel (sural nerve)
-rheumatologist visit: bloodwork normal (ANA, SPEP, CBC, CMP, Vitamin levels, Thyroid, Glucose - all fine, Sed Rate slightly elevated, CRP slightly elevated, Lyme ok, Epstein Barre shows history of infection not current, none of these tests concerned rheumatologist)

May 2020: pain and numbness resolved

June 2020: pain and tingling down outside of left foot when pointing/flexing - still sural nerve, but moved spots from heel to outer edge of foot, sparing the sole/toe and now sparing heel -- tinel's sign moved as well to under ankle

June 2020: met with another neurologist, ruled out MS completely, ordered another nerve conduction

August 2020: nerve pain down big toe when pointing / stretching (superficial peroneal nerve) - tinel's sign positive top of foot down to big toe

September 2020: nerve conduction normal, no EMG - instead, nerve ultrasound
-left sural nerve 30% larger than right, inflamed, but still within normal limits
-neurologist thinks I have "sensitive nerves" and if my feet swell and there's pressure, my feet / nerves suffer -- said to call if worsened

January 2021: sural nerve pain on left outside of foot is also numb, pain when stretching, lack of sensation on skin -- but also now the big toe / superficial peroneal, and a terrible stretching pain top of ankle - still superficial peroneal - when touching the ankle area which is a bit swollen, pain radiates down to top of foot -- all toes spared except big toe -- no numbness there yet)
-contacted neuro, she brought me in for consult -- said all looks good, no weakness, just sensory, just ONE foot, over the course of 2ish years... does not suspect anything insidious... noted Raynauds slightly on left foot, slight swelling, varicose veins in left leg -- believes again, swelling is putting pressure on nerves and is sending me to vascular surgeon)

The pain is intense in my ankle, down to the front of my foot - but again, only when touching (slight touch, major tinel's sign - touching my ankle I can feel it just above my toes on the front of my foot, touching further down on my ankle and it's SEARING pain) or when twisting it (as if rolling ankle - SEARING pain -- worse when lifting leg).

The numbness on the left side of my foot (sural nerve area) is constant, regardless of position, etc.

Bloodwork is mostly fine, I've had high sed/crp for years - I also have PCOS and am overweight, so folks have done more bloodwork but nothing ever comes back with anything telling.

I have my annual mammogram and ob visit, all is fine there (except the PCOS, also have internal ultrasounds so I'm not worried anything is missed in that regard).

Is this peripheral neuropathy? Is this from my lumbar/sac (L5-S1)? The region would certainly match up, but does it present as pain/numbness, with back pain, but normal nerve conduction/EMG? I'm perplexed.

I will say - due to my anxiety, I could be causing some of this - I see a therapist for my health anxiety, and she also has a lot of knowledge of athletics and said I may have caused some of this pain.

I know I swell on my left side due to my vascular issues which are being looked at, but I tend to twist my foot to see if any of the pain has resolved or if it's gotten worse. Twisting it in a way that is almost like an ankle sprain/rolled ankle. I don't know if I'm doing this to myself completely, I don't know if my pain/numbness is considered peripheral neuropathy (my doc says no, with normal nerve conduction and inflamed nerve within normal limits, but does not think this is small fiber and will not do a skin punch until after vascular surgeon, if necessary, and also might send me back to ortho I think to try to get another MRI?).

I'm not sure what to do. I need advice, or assistance, or something... I'm going crazy, the pain is intense, I feel like it's starting in my right foot too, but I'm scared that I'm going to keep "checking" it and causing more damage in both feet... I'm so sorry to inundate, I'm just really afraid of being so young and having either 1) caused nerve damage to myself or 2) have a progressive neuropathy or 3) have an underlying condition that is only going to get worse without prompt treatment.

If anyone has anything to add, any ideas, any stern lectures of "girl literally stop rolling your ankle you dummy lol", I'm game.

Thank you for your understanding and help.

Last edited by gailveronica; 02-15-2021 at 10:49 AM.
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Old 02-15-2021, 11:23 AM #2
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Hi, gailveronica,

I'm sure you're tired of dealing with intense pain such as you describe. Nobody here is an MD, and I can't say whether you have peripheral neuropathy or something else. The important thing is to find a way for you to get rid of the pain, and I hope that you will find that way soon.

If the doctors are taking too long, you might want to try doing things a bit differently and see if that makes a difference. Maybe you've already tried this a million times, but in case you haven't, sometimes if we look carefully at how we typically stand, walk, sit, and lie down during a typical day, we find that there are some little changes we can make that make pain subside.

Compared to you I'm an old bat and have quite a few aches and pains due to MS/arthritis/aging. Sometimes the pains are bad enough to send me to a doctor, and that usually leads to physical therapy sessions. But most times if I just wait it out and treat with hot or cold gelpacks plus maybe aspirin, and changing the way I do things somewhat, I can get rid of the pain.

So look carefully at how you sit or stand or walk, even the type of shoes you wear. Shoes can make a HUGE difference.

It's possible that the doctors can't put a name on what is causing your pain. They don't know everything. Sometimes you just have to work on it yourself and come up with a way of getting rid of it--and that is more important than the name of it, it seems to me.

I'm not suggesting you give up on the doctors. But keep trying on your own to find ways of relieving that intense pain. Coping with constant pain can be very tiring as I'm sure you know.
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Old 02-15-2021, 11:36 AM #3
gailveronica gailveronica is offline
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Thank you so much, agate. Your prompts earlier in my journey led me back to a neurologist for a secondary MS consult. I really appreciate your input and soothing advice. Thank you.
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Old 02-15-2021, 01:51 PM #4
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OP: I don't know if I have replied to you before but I mention the things that I feel work the best in my life with neuropathy:

Getting off sugars big time.
Taking Grape Seed Extract, works for cleaning and thinning blood and does so much.
Taking Inosine.

I've talked about these until blue in the face. And I've posted a lot in the PN area.
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Old 02-15-2021, 04:41 PM #5
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Hi gailveronica

One problem is that there are many possible causes of PN; searching for "one size fits all" can be unhelpful.

From what you have said you have had a series of careful investigations; which is good - I hope something(s) useful emerges soon

Best wishes.
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Old 02-16-2021, 07:48 AM #6
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Default And--

--you might need some imaging or close orthopedic examination of the pelvic area there; certainly compressive neuropathies can come from the lower spine, but also from the hip area and also from the knee.

Given you description of symptoms, there may be an impingement of nerve as it passes through the lower pelvic area on its way down the leg--and yes, this is more common in people who are overweight.

NERVE ENTRAPMENT IN THE HIP REGION: CURRENT CONCEPTS REVIEW
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