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Finally a bit of a diagnosis


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Biopsy proven small fiber neuropathy. The neurologist is working towards IVIG… I already take Lyrica(that’s mostly for my trigeminal neuralgia), alpha lipoic acid, and acetyl L carnitine. Does this diagnosis changed anyone else's management? I’m sure it’s behind my autonomic neuropathy as well as my very uncomfortable parasthesias, burning pain, etc. I’m equal parts relieved that they found something (and that I didn’t have the biopsy for nothing, because it hurt), and scared that we don’t know why it’s there… plus the IVIG itself scares me a bit.

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I have what feels like buzzing/vibrating in my legs and feet all the time, and then a hot pain that is very bad in my heels at night. I can’t have them touch anything - they are suspended on pillows in midair. But my hands are also painfully numb most of the time. Nothing really helps, although the supplements did for a while.

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7 hours ago, RecipeForDisaster said:

I have what feels like buzzing/vibrating in my legs and feet all the time, and then a hot pain that is very bad in my heels at night.

Thank You. You have just described what i fumbled at telling my health care team as to what i feel it is the same as you described. I do feel a bit more empowered when i go back in in 2 months.

I hope you get some relief from your diagnosis. 

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10 hours ago, MikeO said:

Thank You. You have just described what i fumbled at telling my health care team as to what i feel it is the same as you described. I do feel a bit more empowered when i go back in in 2 months.

I hope you get some relief from your diagnosis. 

As with everything else, it’s very hard to put into words. I feel like my legs are against a vibrating/buzzing couch right now.

 

I hope the damage is halted and I have no idea how many of my problems relate to this. I have so much wrong with me, and this doesn’t explain all of it... but my autoimmunity may have caused it and other stuff. 

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Hi Recipe for Disaster (or anyone else that would like to comment)

My vibrating/buzzing started last June 2021.  Neuro’s clinical suspicion is SFN (Small Fiber Neuropathy AND Dysautonomia).  Yikes, what a double nasty dx.  May I ask you when your leg vibrating started?  Was it your first symptom?  And then, may I ask how soon after the leg buzzing into your symptoms did the pain start?  I have had bits of numb/tingling in my hand, toes…and sometimes a sharp pain where I feel I stepped on glass shards, but nothing is in my sock or on the carpet.  Is your pain constant?  Or just at night.  Also I noticed you said the supplements worked at first…may I ask for how long approximately?  I am now taking ALA and Acetyl L-Cartnitine and Bentofamadine (B1).  

Right now I have horrible back of neck/occipital pain/tingling and scalp tingling.  But there are like 1,000 other symptoms that come and go as well.  I am definitely in a flare that was triggered by extreme stress.  When dysautonomia subsides; it seems the SFN kicks up.  My loss of sensation (skin sensory) is diffuse—it can be anyway (torso, arms, legs, feet, abdomen).  When I sleep, my HR goes up to 91+ bpm, when normally I am around 70.  I have low BP and pooling in lower extremities; I’m probably close to POTS starting to happen as well.    No syncope but the head tingling is scaring me…

Sorry for all these questions, but if you wouldn’t answering, I would sure appreciate it.  My Best,  ANN

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4 hours ago, MikeO said:

@RecipeForDisasterI know some of what we go thru can and is scary. I did read up on IVIG treatments and it has it's place. I know it can be costly and inconvenient but have faith it does help. 

I’m definitely ready to try just about anything. I keep getting worse and I was already doing really badly!

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3 hours ago, ANN944 said:

Hi Recipe for Disaster (or anyone else that would like to comment)

My vibrating/buzzing started last June 2021.  Neuro’s clinical suspicion is SFN (Small Fiber Neuropathy AND Dysautonomia).  Yikes, what a double nasty dx.  May I ask you when your leg vibrating started?  Was it your first symptom?  And then, may I ask how soon after the leg buzzing into your symptoms did the pain start?  I have had bits of numb/tingling in my hand, toes…and sometimes a sharp pain where I feel I stepped on glass shards, but nothing is in my sock or on the carpet.  Is your pain constant?  Or just at night.  Also I noticed you said the supplements worked at first…may I ask for how long approximately?  I am now taking ALA and Acetyl L-Cartnitine and Bentofamadine (B1).  

Right now I have horrible back of neck/occipital pain/tingling and scalp tingling.  But there are like 1,000 other symptoms that come and go as well.  I am definitely in a flare that was triggered by extreme stress.  When dysautonomia subsides; it seems the SFN kicks up.  My loss of sensation (skin sensory) is diffuse—it can be anyway (torso, arms, legs, feet, abdomen).  When I sleep, my HR goes up to 91+ bpm, when normally I am around 70.  I have low BP and pooling in lower extremities; I’m probably close to POTS starting to happen as well.    No syncope but the head tingling is scaring me…

Sorry for all these questions, but if you wouldn’t answering, I would sure appreciate it.  My Best,  ANN

Oh, no problem. All of my issues came on so slowly and insidiously that I can’t even tell you what was first. I had numbness and tingling early on, but that’s when we found my B12 was super low. Those symptoms never got much better. Then I realized I wanted to lay down instead of hiking, and I was passing out. That kept getting worse, and eventually I would lose my vision whenever I stood. I now lose my hearing many times when I stand, too. 
 

Most people I talk to say they’ve never heard of the vibrating/buzzing. That’s the best way I can describe it when it’s not super painful. I would say that it was about 5 years before I started getting bad pain in my feet every night. My feet burn all the time, but it’s not that painful except when I’m trying to sleep(it can be very, very painful and hot, mostly my heels). It’s been harder and harder to avoid that pain… I used to be able to wear thick socks, then put them on pillows, and now I have to keep my feet touching nothing at all. The supplements worked for a year or two, and I think they still help. I just got worse.
 

I tried the other B vitamins, partly because I developed trigeminal neuralgia. I definitely have some kind of autonomic dysfunction, and I do have documented HYCH, but not any other specific kind. I have autoimmunity but again, no specific kind. I do not have POTS, but definitely low BP and blood pooling.

 

I also have a bad spine, and bone spurs, bulging discs, etc. So some of this could have been radiculopathy, but it’s very even on both sides. My HR also goes up and is generally too fast, but that’s controlled with 2 different beta blockers. I have lots of PVCs and bigeminy. Even when I don’t, and my HR is low enough, I have awful pounding, violently hard with every beat. Beta blockers have also helped that. My sleep is still awful for so many reasons.

 

One thing that’s super annoying about the neuropathy is the random itching all over - it keeps me up at night. I hope this helps and am always happy to answer questions! I feel like my story is really disorganized and tough to follow, but I’m so complicated and can’t even recall everything that’s bothering me at the moment. I just feel awful.

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11 hours ago, RecipeForDisaster said:

I also have a bad spine, and bone spurs, bulging discs, etc. So some of this could have been radiculopathy

So do you get any pain in your butt cheeks or hip muscles at all? Like you i do get the buzzing/vibrating sensations and is really noticeable while lying down. I also get the burning feeling on the top of my thighs. Some of the discomfort is mostly in my left leg, i get the pain at rest in my left lateral calf and my foot + my left cheek.

I did recently have my left femoral artery opened up (it was 80% blocked) but i can't blame everything on that so i really think i have some kind of nerve issue going on.   

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11 hours ago, MikeO said:

So do you get any pain in your butt cheeks or hip muscles at all? Like you i do get the buzzing/vibrating sensations and is really noticeable while lying down. I also get the burning feeling on the top of my thighs. Some of the discomfort is mostly in my left leg, i get the pain at rest in my left lateral calf and my foot + my left cheek.

I did recently have my left femoral artery opened up (it was 80% blocked) but i can't blame everything on that so i really think i have some kind of nerve issue going on.   

Nope, it’s not that high yet, maybe just a little buzzing there. My upper calves, yes. The worst is the lowest, starting on the soles of my feet and heels, my fingers and hands… 

My legs fall asleep pretty much instantly if I sit in a regular chair. It’s super bad at the moment! As in, I can’t stand or walk.

My circulation is bad, too. Not blockages, but not good. 

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12 minutes ago, RecipeForDisaster said:

Nope, it’s not that high yet, maybe just a little buzzing there. My upper calves, yes. The worst is the lowest, starting on the soles of my feet and heels, my fingers and hands… 

My legs fall asleep pretty much instantly if I sit in a regular chair. It’s super bad at the moment! As in, I can’t stand or walk.

My circulation is bad, too. Not blockages, but not good. 

Thank You! for sharing what you feel. I did get the nerve up to test boog my left leg today. I cut the grass with the self propelled push mower (brain fog kicked in this morning and could not find my car keys to pull the car out of the garage to get the rider out, Yo and behold they were sitting right where i usually leave them ) did ok 1/4 of the lawn at a time then rest but after the pain kicked in again ((:angry:)).

I did make my broth concoction and it seems to help with the discomfort or just lets me think it does. I have no idea how i got into my predicament, maybe caught it from a public toilet seat "Haha" sure @Pistolwill correct me on that :) but i do share your pain.

I see my Vascular Dr in 2 months he did allude to some nerve issues possibly also keeping my faint team in the loop as i have made some progress with stabilizing my bp's. 

If i find anything out i will update you!

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10 hours ago, MikeO said:

Thank You! for sharing what you feel. I did get the nerve up to test boog my left leg today. I cut the grass with the self propelled push mower (brain fog kicked in this morning and could not find my car keys to pull the car out of the garage to get the rider out, Yo and behold they were sitting right where i usually leave them ) did ok 1/4 of the lawn at a time then rest but after the pain kicked in again ((:angry:)).

I did make my broth concoction and it seems to help with the discomfort or just lets me think it does. I have no idea how i got into my predicament, maybe caught it from a public toilet seat "Haha" sure @Pistolwill correct me on that :) but i do share your pain.

I see my Vascular Dr in 2 months he did allude to some nerve issues possibly also keeping my faint team in the loop as i have made some progress with stabilizing my bp's. 

If i find anything out i will update you!

I use a non-self propelled push mower. It is time to use it! It takes me 4 miles of walking to get it done. I’m having a rough few days, or getting worse, so I’ve been putting it off.

I drink a lot of broth and make a cold hydration solution for hot weather. It doesn’t help me all that much, but I like it.

Vascular is one specialist I don’t have. I think there are 4 neurologists and 5 cardiologists, though. All with different sub specialties.

Is that a Frank Zappa reference? Haha! Good luck!

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15 hours ago, MikeO said:

I cut the grass with the self propelled push mower

 

5 hours ago, RecipeForDisaster said:

I use a non-self propelled push mower

I use a husband on a riding mower for 11 acres. 

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On 5/14/2022 at 7:09 PM, RecipeForDisaster said:

Oh, no problem. All of my issues came on so slowly and insidiously that I can’t even tell you what was first. I had numbness and tingling early on, but that’s when we found my B12 was super low. Those symptoms never got much better. Then I realized I wanted to lay down instead of hiking, and I was passing out. That kept getting worse, and eventually I would lose my vision whenever I stood. I now lose my hearing many times when I stand, too. 
 

Most people I talk to say they’ve never heard of the vibrating/buzzing. That’s the best way I can describe it when it’s not super painful. I would say that it was about 5 years before I started getting bad pain in my feet every night. My feet burn all the time, but it’s not that painful except when I’m trying to sleep(it can be very, very painful and hot, mostly my heels). It’s been harder and harder to avoid that pain… I used to be able to wear thick socks, then put them on pillows, and now I have to keep my feet touching nothing at all. The supplements worked for a year or two, and I think they still help. I just got worse.
 

I tried the other B vitamins, partly because I developed trigeminal neuralgia. I definitely have some kind of autonomic dysfunction, and I do have documented HYCH, but not any other specific kind. I have autoimmunity but again, no specific kind. I do not have POTS, but definitely low BP and blood pooling.

 

I also have a bad spine, and bone spurs, bulging discs, etc. So some of this could have been radiculopathy, but it’s very even on both sides. My HR also goes up and is generally too fast, but that’s controlled with 2 different beta blockers. I have lots of PVCs and bigeminy. Even when I don’t, and my HR is low enough, I have awful pounding, violently hard with every beat. Beta blockers have also helped that. My sleep is still awful for so many reasons.

 

One thing that’s super annoying about the neuropathy is the random itching all over - it keeps me up at night. I hope this helps and am always happy to answer questions! I feel like my story is really disorganized and tough to follow, but I’m so complicated and can’t even recall everything that’s bothering me at the moment. I just feel awful.

Thank you, Recipe, for such a detailed explanation of your symptoms!  I apologize for the late reply.  Sunday I had to go to the ER due to an AFib attack (I have that as well).  So many things you’re describing I can relate to.  I’m not sure what you meant when you said you have documented HYCH?  If you could tell me what that is.

I have low blood pressure.  I have PVC’s, PACs, SupraVentricular Ectopy.  I take 50mg Metroprolol only “as needed” as I am just starting out with AFib.  However, when I do now, my blood pressure REALLY drops.  Why give a blood pressure lowering medication to someone who already has LOW BP for AFib to lower heart rate?  I was told by another doctor it’s because that’s the only tool in his box (like there are not a lot of options to slow the HR).  So I go into Tachycardia then the AFib.  Also happens with nonstop heart pounding, especially when laying down.  What is weird and I’m not sure this happens to you, is the vibrating started in my left leg and still does that…but it moved up to my chest.  So during the night, when I wake up (which is so frequently, I have these “Chest/Torso Vibrations”.  Which is a precursor to the tachycardia, then AFib if it goes that far.  Then I took the Metroprolol and I was so light headed I went to ER where my BP was 75/53 or something awful like that.  I was started crying while being triaged and that kicked me out of the AFib (not the Metroprolol—that had no effect).  So this is my sympathetic/parasympathetic not working well.  Very adrenaline sensitive.  I am not quite POTS but that may be coming as my HR goes 25+ bpm when standing.  At first I thought that was due to deconditioning.  I’ve also had night terrors twice which I’ve NEVER had happen before…very very scary.  Tonight I am waking up just about every hour…for some reason I can’t stay asleep.  My sleep is very broken which can lead to a host of other problems.  

I have severe thoracic kyphosis and disc bulging/herniations as well, however, all the Neuro wanted to do was a Brain MRI and Cervical MRI.  I really need the Thoracic and Lumbar MRIs but he won’t order them for some reason, even though I have a long history of Sciatica down the left leg (the one that buzzes how) and any slight arch to my back causes pain on the lower right side.  The Cervical MRI showed MODERATE FORAMINAL NARROWING C4/C5 Left side…now my left collar bone can barely feel touch.  It’s like it’s dead skin.  It’s lost sensation.  I’ve also lost sensory sensation in certain places around my ankles and lower legs, but I’m wondering if that is from all the edema/blood pooling and now I have super large veins in my lower legs.  I wear compression stockings now.  

Last summer when I presented to the ER, the attending saw my heart monitor go from 42 bpm (I had bradycardia then), then 178 bpm, back down to 57 bpm all in under one minute!  She said she’s never seen that before.  So my Neuro suspects Cardiac Autonomic Neuroopathy and referred me to Vanderbilt or told me to go to Mayo.  I don’t have money or good insurance so that’s out of the question.  Neuro wants me to do that painful Electromyography and Nerve Conduction Velocity tests which he believes will be Negative and also believes what I have may be idiopathic.  So I keep canceling that that painful test.  Why bother?

One of my initial symptoms was very dry mouth.  I have it constantly.  I had a lip biopsy that was negative for Sjorgren’s.  

I also had as an initial symptom (which still happens) is difficulty swallowing. And when I ate some old bad food, I tried to make myself throw up and it worked the first couple times, but them my vagal nerve failed and I could not make myself throw up.  (Sorry for any detail too graphic).  I’ve been tested Negative for Lyme, Paraneoplastic Syndrome, antibodies for all the major autoimmune diseases (Scleroderma, Lupus, Erler’s, Rheumatoid Arthritis, etc.).  The only one that came back high was my Kappa Light Chain (which could signify Multiple Myeloma), so I’m waiting to hear back from Hemotology/Oncology as it came down slightly but still elevated.

Also have had 2 instances since last summer of slurring words and just above my upper lip fasciculations.  I’m so sorry to hear you have Trigeminal Neuralgia!  Do you get it often?  Does the pain meds work?  There are doctors that do surgery to cut that nerve if it gets bad.  

i get severe cramps at night in my calves with stiffness upon waking.   I’ve been taking Magtein (Magnesium Threonate) which helps a bit but my lower calf muscles get really stiff and can cramp, even at the ankle.

I was exposed from a crazy neighbor that lived above me to a lot of poisons.  Pesticides, Herbicides, mustard gas (long story) from 2014/2015.  Now my nervous system is going.  I worry about Multiple System Atrophy, tbh, which is eventually fatal.

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HYCH is hypocarbic Cerebral Hypoperfusion, which is diagnosed on tilt table test. I had a severe decrease in my brain circulation when tilted, but I didn’t come up positive for any of the "normal" TTT diagnoses. 
 

The trigeminal neuralgia is managed on medication now. For five months, I didn’t know how I would get through life. I have mostly type II which is continuous pain. I do get face shocks, too. I am not eligible for the most successful type of surgery.

 

My BP has been documented at 72/40 and I’m sure it’s been lower when I’ve collapsed or passed out. I use metoprolol at bedtime only, and I would not be able to sleep without it due to the pounding. I take acebutolol in the morning, and it does not seem to affect my BP. Both are pretty low doses, though. A-fib stinks!

 

I just saw my sleep specialist yesterday. She does not know what to do with me. She does think my broken sleep is a big problem. It makes a huge difference in how I feel and function. I often sleep just a couple of broken hours a night. It’s awful. I have taken magnesium for many years.

 

My doctors are trying to send me to the NIH undiagnosed diseases program, but they only accept 10% of patients, and traveling is next to impossible for me. Mayo didn’t want me!

 

I did the EMG a long time ago. Luckily my current neurologist said I just needed the biopsy (which I didn’t like, either). My swallowing is not great, either. I also tested negative for all of those specific diagnoses like lupus, RA, paraneoplastic (although I do have positive immunofluorescence).

 

They should find MSA quickly if it’s present. Good luck! 

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