Amyloidosis - rare but possible?

[gailveronica]

Hi, Everyone!

I've posted multiple times here because.. I have health anxiety.

My main symptoms that started this year are left-sided tingling (thigh/shin, fingers, arm, side of face), dizziness, heat intolerance, occasional swollen lymphs (that mean nothing, disregard) and high SED rate / CRP.

I've had an MRI of my brain (normal with a few white matter lesions consistent with migraine) and lumbar spine (normal), a CT scan of neck/chest (normal), x-ray of spine (normal), ultrasound of 2 lymphs (normal).

Within the past 3 weeks I noticed my 4th and 5th toes on my left foot have started to lose feeling. I then started to feel a sharp pain in my heel, just under my ankle on the outside, whenever I flexed my foot upward if my leg was straight out, or twisted it outward with my leg straight out.

It's a tearing, searing pain, like something is trying to burrow out of my foot.

I also noticed that if I touch where the pain is, I have zero sensation on that spot of my foot. I can do a pinprick test around it and feel it, but where the pain is on the inside, I can't feel anything on the outside.

My GP thinks it's a pinched nerve (especially since I feel it in my heel when she taps outside of my achilles) which makes sense, but with the left-sided tingling that's been going on, I'm a bit worried.

I don't have MS, the brain scan was clean. I don't have a spinal tumor, lumbar scan was clean.

She's sending me to an orthopedic surgeon who specializes in foot/ankle pain and said I could ask for a cortisol shot to see if it helps, and they might do an MRI of my foot.

My new worry - I have a growth / tumor somewhere that is compressing this nerve in my leg / foot, causing searing pain and skin numbness (completely numb, like anesthetic, in a spot a little bigger than a quarter below my outer ankle).

Or myeloma.

Or ALS.

Or MS and they missed something.

Guys. Why can't a pinched nerve just be a pinched nerve, in my world??

[Careful1]

This sounds like a classic case of a pinched nerve, trust me I have one in my lower back and one in my neck. The pain you describe is spot on as is the tingling/numbness and decreased sensation.

You had a decent work up and they found nothing, rejoice in that fact. An orthopedic doctor may be able to help you so it's good your dr has referred you to one... Now work on treating your anxiety and stop worrying about all the other conditions you dont have.

[gailveronica]

This sounds like a classic case of a pinched nerve, trust me I have one in my lower back and one in my neck. The pain you describe is spot on as is the tingling/numbness and decreased sensation.

You had a decent work up and they found nothing, rejoice in that fact. An orthopedic doctor may be able to help you so it's good your dr has referred you to one... Now work on treating your anxiety and stop worrying about all the other conditions you dont have.

This is reassuring! Looking it up online I can find pain OR numbness but never both - the decreased sensation really worried me. This makes me feel a lot better, thank you for your help

[gailveronica]

Ugh ....now I'm convinced I have multiple myeloma (my uncle died of this, terrible disease). Numbness, tingling, pain entire left side of body. Doctors haven't seen anything but I'm, of course, worried. Of course. Because... health anxiety.

[gailveronica]

Update:

I saw an orthopedic surgeon for my foot, who said "huh!" when I told him where it hurt. He said it's most likely Sural Neuritis, an inflammation of my Sural Nerve - xrays were clear. He's setting up an MRI and a nerve conduction test just to see, but he thinks they'll all come back clear, as well. He's fairly confident I just pinched/compressed/injured my sural nerve. It's completely numb, no sensation to touch, but SEARING pain when I move my foot in a certain way. Sural neuritis is apparently rare, but Tinel's Sign (tapping my foot just above the nerve) was positive, so it makes sense?

Still worried about myeloma / MS / Brain tumor, as the orthopedic surgeon said "well, sometimes horse hooves are just horses running, but once in awhile you get the zebra..." so he said I COULD be a zebra but... who knows. I sure don't.

[Siffi]

Update:

I saw an orthopedic surgeon for my foot, who said "huh!" when I told him where it hurt. He said it's most likely Sural Neuritis, an inflammation of my Sural Nerve - xrays were clear. He's setting up an MRI and a nerve conduction test just to see, but he thinks they'll all come back clear, as well. He's fairly confident I just pinched/compressed/injured my sural nerve. It's completely numb, no sensation to touch, but SEARING pain when I move my foot in a certain way. Sural neuritis is apparently rare, but Tinel's Sign (tapping my foot just above the nerve) was positive, so it makes sense?

Still worried about myeloma / MS / Brain tumor, as the orthopedic surgeon said "well, sometimes horse hooves are just horses running, but once in awhile you get the zebra..." so he said I COULD be a zebra but... who knows. I sure don't.

Glad he's doing further tests about what's causing this, good luck. You could have a ganglion pressing on the nerve, doesn't always have to be a tumour or something sinister, could even be a tight muscle since the sural nerve travels under the calf muscles and could get entrapped there. MS usually affects both sides of the body and usually gets better than worse and better again then worse. With myeloma, you would be very sick, get constant infections and have trouble with your blood clotting. Have you discussed your worries with your orthopedic surgeon/GP?

[gailveronica]

Glad he's doing further tests about what's causing this, good luck. You could have a ganglion pressing on the nerve, doesn't always have to be a tumour or something sinister, could even be a tight muscle since the sural nerve travels under the calf muscles and could get entrapped there. MS usually affects both sides of the body and usually gets better than worse and better again then worse. With myeloma, you would be very sick, get constant infections and have trouble with your blood clotting. Have you discussed your worries with your orthopedic surgeon/GP?

Thanks - you’re right about myeloma. I’ve had normal bloodwork other than slightly elevated inflammatory markers. I would be very ill by the time it damaged my nerves enough to cause pain/neuropathy. I worry because my uncle had it and passed, but waited too long. His nerves were damaged by the end.

MS does affect just one side of the body quite often. My neuro from 4 years ago had suspicions due to vertigo and visual issues, as well as other symptoms (swallowing difficulties, etc). They went away so I stopped seeing him. He said if it’s MS it would come back. It did. This year. Earlier. It went away this summer but is back again, tingling down the front of my shin and thigh and now my sural nerve pain and numbness on one spot of my foot. Also dizziness and nausea but I have IBS and ongoing vertigo issues so that could be a red herring. My GP does think I have MS but my new neuro said my brain is healthy - though I have multiple lesions and the radiologist said “MS can’t be ruled out.” My GP wants me to see a different neuro, im just exhausted by this whole process. MS doesn’t frighten me really, I just honestly want some answers or I’ll keep falling down a google hole of myeloma, lymphoma, ALS, brain cancer, sarcoma, etc etc. it’s tiresome!

[Careful1]

That's why you shouldn't Google your symptoms. My nuero suspected I had MS as well but seriously there are a million other more common conditions then MS that share the same symptoms.. In this instance the symptoms you describe in your first post are classic for a pinched nerve which is a common condition, painful and annoying but not life threating.

I am sure your orthopedic didn't mean that he suspects you have something more sinister going on with his analogy. He probably just meant he is fairly confident his diagnosis is accurate but that he wants to run some tests to make certain.

[gailveronica]

That's why you shouldn't Google your symptoms. My nuero suspected I had MS as well but seriously there are a million other more common conditions then MS that share the same symptoms.. In this instance the symptoms you describe in your first post are classic for a pinched nerve which is a common condition, painful and annoying but not life threating.

I am sure your orthopedic didn't mean that he suspects you have something more sinister going on with his analogy. He probably just meant he is fairly confident his diagnosis is accurate but that he wants to run some tests to make certain.

You're right - the orthopedist doesn't know about my health anxiety, so clearly when he said that, he meant nothing by it, other than "sometimes this can happen." Not that it's happening to *me*. Still, due to my left-sided tingling and now pain/numbness in foot, I convinced myself I have myeloma - or now, amyloidosis (that, what, 4500 people in the US have? I'm ridiculous), but my mouth has been burning for a week and half, my left chin and leg have been tingling for a year, my foot is newly pained / numb (it's just a spot, the size of a quarter) and I'm just... I went down the rabbit hole. I know I need to stop - but I also know we have to be our own advocates, as many doctors DO see the "horse" before the "zebra." I know most neuropathy is idiopathic, with no cause ever found, but... that amyloidosis google hole is a rough one. I understand my triggers (the internet) but I'm also so worried I'll go too long without a diagnosis and end up very sick. Sickness is my fear. And this amyloidosis... is... similar to many of my symptoms...

[gailveronica]

I happened to find Amyloidosis when searching for my ever-growing neuropathy (tingling front of thigh/shin, now numb spot on foot and burning pain when flexing, sural neuritis diagnosed by orthpedist, burning mouth and lips, tingling on face). This is a nightmare disease. < 4500 people in the US have it each year, most are older than 50 and most have another disease (such as multiple myeloma) but some have primary amyloidosis and with my elevated ALP and inflammatory markers, as well as my growing neuropathy, I'm terrified. I can't stop googling it, and I know I have to. I even posted to a forum for people who suffer from it (they are told they have <1 year to live) to see if they think I should bring it up to the doctor or if I'm being crazy. Most doctors don't know about it, so I don't know... I seem to fit the neurological symptoms, especially since my brain/lumbar MRIs were clear, and I have tooth indents on my tongue (indicative of macroglossia, a swollen tongue due to too much protein such as amyloid).

I'm getting really worked up and I can't seem to stop myself. I've had CBD and I understand that googling is my downfall and I need to find distractions, but it's so hard when my tongue is burning and my lips are tingling and my numb spot on my foot is growing due to the neuritis and my leg tingling is worsening and I have diarrhea and weakness and vertigo and I'm a mess. I've been searching for answers for a year and I feel like my doctors have been mostly thorough (except my neurologist who didn't even do a nerve conduction study before saying "can you live with this? then you've graduated from my practice" after 2 visits for neuropathy).

What if I am one of the rarities? Nothing says I can't be. Both parents have cancer (advanced, stage 3 breast and stage 4 prostate) and I'm just a wreck all the time now. My husband is so sick of me. My therapy isn't really working because I'm obsessive about this, but my foot is numb and painful and every time I walk or eat I'm reminded ... something's wrong.