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.:weep:

[Elen]

Hi

This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Elen

[gailveronica]

Thank you! Didn't even think to combine them :)

[utrocket09]

Doesn't sound like you know very much about myeloma. Myeloma is a a plasma cancer, i your white blood cells and can cause bones to break. It can also cause anemia, my aunt died of it in February. If you had it, you would probably not be able to walk.

[gailveronica]

Doesn't sound like you know very much about myeloma. Myeloma is a a plasma cancer, i your white blood cells and can cause bones to break. It can also cause anemia, my aunt died of it in February. If you had it, you would probably not be able to walk.

It affects people differently, my uncle died from it, his actually hit his nervous system / lungs pretty hard. I'm so sorry that your aunt suffered as well. My condolences.

[gailveronica]

That being said, I'm not as concerned about myeloma (as that would most likely show in the bloodwork) as I am about amyloidosis (which... takes a biopsy to show, and most doctors have never seen it). Because of COURSE I'm worried about the rarities. Because: health anxiety.

[gailveronica]

Amyloidosis is terrifying me...


"Amyloidosis (am-uh-loi-DO-sis) is a rare disease that occurs when a substance called amyloid builds up in your organs. Amyloid is an abnormal protein that is produced in your bone marrow and can be deposited in any tissue or organ.


Impairment of many organs, nerves and soft tissues can cause symptoms, among them the kidneys, heart, the GI tract (the digestive system) and the nervous system.


The Kidneys
Chronic kidney disease is common in patients with AL amyloidosis. Amyloid deposits in the kidneys can affect how they filter toxins and proteins in the blood. This may result in a condition called nephrotic syndrome, where there is excess protein in the urine and the lower legs can become swollen (also called “edema”). Swelling can affect the belly, arms, and lungs as well. In some cases, the amyloid deposits will cause the kidneys to lose the ability to purify the blood, which can lead to kidney failure; also known as “renal” failure. These patients may need dialysis to replace the function of the kidneys.


The Heart
Amyloid deposits in the heart can cause it to become unusually thickened and stiff, making it unable to function efficiently. This results in shortness of breath, which may occur with only minor activity. Amyloid can also affect the electrical system of the heart, causing the normal heartbeat to speed up or slow down. This is known as arrhythmia.


The Digestive System
The digestive system is also called the gastrointestinal tract (or GI tract). Amyloid deposits in the digestive system can cause nausea, diarrhea or constipation, weight loss, loss of appetite, or a feeling of fullness in the stomach after eating small amounts.


The Nervous System
Amyloid deposits can affect the nerves of the hands, feet and lower legs and may cause pain, numbness and tingling. A loss of sensitivity to temperature may also occur. This is called peripheral neuropathy. Nerves that control blood pressure, heart rate, bowel motility, erectile function, and other body functions can also be affected, causing a variety of symptoms including dizziness when standing too quickly, nausea and diarrhea. This is called autonomic neuropathy.


Other Symptoms
There are other symptoms that are common and may have been present for some time before diagnosis, such as chronic fatigue and weakness. Some patients with AL amyloidosis experience purpura, which is bruising around the eyes or other skin areas."


It could actually be this. My doctor called me and said it's not, and said that I should continue with the orthopedist and the MRI on my foot, as my bloodwork earlier this year was fine - but how can she know? You can only find out by a biopsy... I'm so worried.

[utrocket09]

It could actually be this. My doctor called me and said it's not, and said that I should continue with the orthopedist and the MRI on my foot, as my bloodwork earlier this year was fine - but how can she know? You can only find out by a biopsy... I'm so worried.

Uh not it could't. Your doctor know because they have studied medicine longer than your google degree. I happened to google this condition and it is extremely rare. If you actually needed a biopsy you would have been sent for one.

[gailveronica]

Uh not it could't. Your doctor know because they have studied medicine longer than your google degree. I happened to google this condition and it is extremely rare. If you actually needed a biopsy you would have been sent for one.

I know that you’re right, logically. But what’s to say I’m not a rarity? Since my last neuro visit my foot began to hurt and a part of it went numb. Like. No feeling at all. Amyloid deposits could have caused it. But my general doctor said very calmly that there aren’t any blood lab tests that she could run that haven’t already been run. She said with all the specialists, someone would have noted if I needed further tests. She’s right. But at the same time, numbness and tingling with no reason that seems to be spreading is... suspect, no? Amyloidosis is the only thing I’ve found that seems to fit?

[utrocket09]

I know that you’re right, logically. But what’s to say I’m not a rarity? Since my last neuro visit my foot began to hurt and a part of it went numb. Like. No feeling at all. Amyloid deposits could have caused it. But my general doctor said very calmly that there aren’t any blood lab tests that she could run that haven’t already been run. She said with all the specialists, someone would have noted if I needed further tests. She’s right. But at the same time, numbness and tingling with no reason that seems to be spreading is... suspect, no? Amyloidosis is the only thing I’ve found that seems to fit?

Do you know how many people come here and say they have a rare illness? I would be shocked if you were one of few thousands diagnosed with this yearly. Since you don't want to listen to logic or your doctor, I am done feeding your anxiety dragon.

[BlueIris]

You're in a spiral, Gailveronica, and you're not identifying the real problem.

Life is uncertain, and for the sake of your peace of mind it's important to learn to live with this. You've got a lot of random sensations, and that's a huge hallmark of anxiety.

[gailveronica]

You're in a spiral, Gailveronica, and you're not identifying the real problem.

Life is uncertain, and for the sake of your peace of mind it's important to learn to live with this. You've got a lot of random sensations, and that's a huge hallmark of anxiety.

You're right. I know. Logic fails me when it's my own body - I'm so good at talking other people off the ledge but when it comes to myself and my health anxiety, I lose all control. Thank you. I am spiraling. Many of the sensations I'm feeling are anxiety-produced (burning mouth, tingling leg/chin/arm) and I'd been feeling much better, until my sural nerve began to hurt and my foot began to go actually numb. It's constant. But I have a doctor looking at it, taking it seriously, doing an MRI and nerve conduction. It would be bonkers for me to ask "is this amyloidosis???? and will you test????" and I 100% understand that. It's so hard when there's so much information at our fingertips and I feel like I always am better when I'm informed, but too much information is detrimental to my mental health.

Thank you, BlueIris. I appreciate your guidance and candor.

[BlueIris]

It's really tough, yes, but you have a measure of self-awareness and that's what you'll need to rely on.

[gailveronica]

It's really tough, yes, but you have a measure of self-awareness and that's what you'll need to rely on.

My poor broken self-awareness thanks you, BlueIris lol

[gailveronica]

I was reading online that amyloid can deposit on your toenails years before amyloidosis symptoms appear - I’ve had toenail fungus for 5 years I just never really thought anything of it. I’m worried. Now with the neuropathy and my burning tongue and my nerve pain that spreading, I’m convinced I have Amyloidosis. I don’t know how to move past this. I’m full on panicking.

[BlueIris]

Use your coping strategies. You'll be okay.

[gailveronica]

Thank you, BlueIris. I went through some of my past bloodwork, from 3 years ago, as the amyloidosis forum talks about immunofixation serum and protein serum testing, that can essentially rule out amyloidosis. Apparently, 3 years ago, when I presented with vertigo / high inflammation, my rheumatologist ordered that bloodwork and it came back fine. While it has been awhile, I can't imagine that within 3 years the numbers would come back differently enough to cause symptoms, when they were negative 3 years ago.

Thank you everyone for being there while I panic-spiraled. I have a hard time letting go of the odd symptoms, I'm a terrible patient, and I'm so grateful to all of you for helping me (and the rest of us) along our journey.