Help asking doctor if this is small fiber neuropathy or something else

Posted by albiet @albiet, Mon, Nov 4 12:04pm
  1. HELP please. im going to a neurologist that deals specifically with neuropathy. i had seen him in march and he took a bunch of blood work and nothing came up. he wanted to put me on either neurontin or lyrica and i said i’d prefer not at that time.

i dont know if whats going on is from small fiber or something else. please read my background and help me figure out what to ask. he is very detailed and i have to be very short and specific.

my back ground .10 years ago i was tested and told i had small fiber neuropathy. background – i had major burning, pain , tingling and insomnia in 1990 and 97. both lasted 1-2years and finally subsided. my main drugs have been immipramine or immipramine and cymbalta. i had a car accident in 2003 and had back issues (herniations in cervical, thoracic )along with pain in 2003 and again in 2009 which is when i was told i had sfn but could not find the cause.. i had been doing ok until early 2018. i started getting chest pain in march 2018 and also some limited strange tingling on my right arm and leg . the chest pains went away after about 6 months. i saw a cardiologist who took extensive tests and ruled out my heart.. i didnt really feel the tingling much until july of 20018 right after i got back from africa. as the months went on i also started getting a cloudiness in my head that comes and goes. i get a dryness/feeling pulling of skin/muscles. my legs started to really tingle constantly in november 2018 and not long after my arms started feeling that also. ny feet started to feel some numbness(not totally numb but feels different(need help in describing better) i also then noticed that my teeth started chattering slighlty (by slighlty i mean i feel it but hard to see but i feel like im constantly chopping) the other thing i started getting is tinnitus.
im basically they cant find anything so it must be sfn. (i recently also went to ms dr who told me its not m/s)

what questions or tests can i ask the dr? does anyone else with sfn get the head cloudiness, tinnitus, teeth chattering?
thank you all in advance

Hi Albeit
Your case is somewhat complicated by the fact that you have symptoms that are not well localized in space and time.
You don't say how you got the diagnosis of SFN. There is a definitive test for this condition, a skin biopsy of the foot and another for the thigh for control purposes. You also should have had a nerve conduction study. SFN is not generally a diagnosis of exclusion, as you implied in the last sentence of your first paragraph.
I don't think this forum is the place for you to be told what tests to tell your doctor to order.
I share your frustration with the lack of time allotted for medical visits. The neurologist will not be able to explain all your symptoms with one diagnosis, or generally with one visit. His/her job is to get a good history and exam, then get the appropriate tests in the correct order (the results of one test often lead to another test).
One thing that might help is for you to list your symptoms, diagnoses, and previous test results in chronological order on a piece of paper that you can show to him/her. Then try to relax as much as possible, and let the system proceed.
Good luck, and keep us posted.

REPLY

Hello @albeit — I agree with @jeffrapp that as patients we can't tell you what tests for you to tell your doctor to order. There is another discussion that might be helpful when seeing a new doctor or specialist.

There are some good tips on seeing a new specialist or doctor by @roch here:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

Hope you can come back and let us know the outcome of your appointment.

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@johnbishop

Hello @albeit — I agree with @jeffrapp that as patients we can't tell you what tests for you to tell your doctor to order. There is another discussion that might be helpful when seeing a new doctor or specialist.

There are some good tips on seeing a new specialist or doctor by @roch here:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

Hope you can come back and let us know the outcome of your appointment.

Jump to this post

Hi John,

I subscribe to Consumer Lab which defines itself as an independent lab. They posted the following on B12. I know you are doing fine on the Facebook protocol but 40 drops of that liposomal B12 seems like a lot. Here is what Consumer Lab reported:

"Although no "Upper Tolerable Intake Level" has been established, there are risks associated with getting too much B-12 from supplements. At a dose of 500 mcg (one-sixth the amount in your supplement), an increased risk of colorectal cancer was reported in a placebo-controlled study of older people. Doses of just 20 mcg per day or higher have caused outbreaks of acne and rosacea . A high-dose B complex supplement (with 1,000 mcg of B-12) hurt, rather than helped, people with type 1 or type 2 diabetes and advanced kidney disease , resulting in a worsening of kidney function and an increase in the risk of heart attack, stroke and death.

In women who are pregnant, excessive blood levels of vitamin B-12 have been associated with an increased risk of autism in their children.

Taking some B-12 is advisable for people over the age of 50 (when you're less able to extract B-12 from food), as well as for those taking medications that interfere with B-12 absorption (such as Prevacid, Prilosec and metformin), strict vegetarians, alcohol and drug abusers, people recovering from surgery or burns, and those with bowel or pancreatic cancer. But the amount needed to avoid deficiency is small and nowhere near the amount in the supplement you describe in your B-complex.

If you decide to take a B-12 supplement, you may want to choose one that has the right dose for you and has been tested and Approved by ConsumerLab.com . Be aware that sublingual and dissolvable B-12 supplements often contain sugar substitutes that can cause gas, bloating, and diarrhea in some people — particularly if taking multiple pills. You can use the Ingredients listings in CL's Review to spot and avoid these ingredients.

In general, it's best to avoid excessive doses of any vitamin if it is not needed."

What do you think?

REPLY
@jeffrapp

Hi Albeit
Your case is somewhat complicated by the fact that you have symptoms that are not well localized in space and time.
You don't say how you got the diagnosis of SFN. There is a definitive test for this condition, a skin biopsy of the foot and another for the thigh for control purposes. You also should have had a nerve conduction study. SFN is not generally a diagnosis of exclusion, as you implied in the last sentence of your first paragraph.
I don't think this forum is the place for you to be told what tests to tell your doctor to order.
I share your frustration with the lack of time allotted for medical visits. The neurologist will not be able to explain all your symptoms with one diagnosis, or generally with one visit. His/her job is to get a good history and exam, then get the appropriate tests in the correct order (the results of one test often lead to another test).
One thing that might help is for you to list your symptoms, diagnoses, and previous test results in chronological order on a piece of paper that you can show to him/her. Then try to relax as much as possible, and let the system proceed.
Good luck, and keep us posted.

Jump to this post

That is a great reply Jeff.

REPLY
@jager5210

Hi John,

I subscribe to Consumer Lab which defines itself as an independent lab. They posted the following on B12. I know you are doing fine on the Facebook protocol but 40 drops of that liposomal B12 seems like a lot. Here is what Consumer Lab reported:

"Although no "Upper Tolerable Intake Level" has been established, there are risks associated with getting too much B-12 from supplements. At a dose of 500 mcg (one-sixth the amount in your supplement), an increased risk of colorectal cancer was reported in a placebo-controlled study of older people. Doses of just 20 mcg per day or higher have caused outbreaks of acne and rosacea . A high-dose B complex supplement (with 1,000 mcg of B-12) hurt, rather than helped, people with type 1 or type 2 diabetes and advanced kidney disease , resulting in a worsening of kidney function and an increase in the risk of heart attack, stroke and death.

In women who are pregnant, excessive blood levels of vitamin B-12 have been associated with an increased risk of autism in their children.

Taking some B-12 is advisable for people over the age of 50 (when you're less able to extract B-12 from food), as well as for those taking medications that interfere with B-12 absorption (such as Prevacid, Prilosec and metformin), strict vegetarians, alcohol and drug abusers, people recovering from surgery or burns, and those with bowel or pancreatic cancer. But the amount needed to avoid deficiency is small and nowhere near the amount in the supplement you describe in your B-complex.

If you decide to take a B-12 supplement, you may want to choose one that has the right dose for you and has been tested and Approved by ConsumerLab.com . Be aware that sublingual and dissolvable B-12 supplements often contain sugar substitutes that can cause gas, bloating, and diarrhea in some people — particularly if taking multiple pills. You can use the Ingredients listings in CL's Review to spot and avoid these ingredients.

In general, it's best to avoid excessive doses of any vitamin if it is not needed."

What do you think?

Jump to this post

Hi @jager5210, I ran the protocol supplements by my doctor who ran them by the Mayo pharmacist and he only commented on thinking the Omega 3 and 6 oils were high but didn't say much else. I'm no expert but everything I've read says B12 is generally safe at any dosage. It is always wise to run supplements by your doctor in case you have a condition that a high B12 dosage may have an adverse affect on you. The liquid B12 product hasn't been available for quite awhile now so I have been using a substitute – Seeking Health | Active B12 Lozenge with L-5 MTHF 1000 mcg tablet. It does have a warning for pregnant women and children.

I may be wrong but the Consumer Labs article seems to be written to a healthy person taking vitamins vs. a person who is using therapeutic level dosages to help with a condition. The one vitamin I really worry about is B6 because high levels of it are toxic and can cause neuropathy or make it worse. A lot of multivitamins have high levels of B6.

Here are a couple of links that provide more info:

Mayo Clnic – Vitamin B-12
https://www.mayoclinic.org/drugs-supplements-vitamin-b12/art-20363663
APha – Recommending OTC vitamin B12 (a little old from 2012)
https://www.pharmacist.com/recommending-otc-vitamin-b12

REPLY
@jeffrapp

Hi Albeit
Your case is somewhat complicated by the fact that you have symptoms that are not well localized in space and time.
You don't say how you got the diagnosis of SFN. There is a definitive test for this condition, a skin biopsy of the foot and another for the thigh for control purposes. You also should have had a nerve conduction study. SFN is not generally a diagnosis of exclusion, as you implied in the last sentence of your first paragraph.
I don't think this forum is the place for you to be told what tests to tell your doctor to order.
I share your frustration with the lack of time allotted for medical visits. The neurologist will not be able to explain all your symptoms with one diagnosis, or generally with one visit. His/her job is to get a good history and exam, then get the appropriate tests in the correct order (the results of one test often lead to another test).
One thing that might help is for you to list your symptoms, diagnoses, and previous test results in chronological order on a piece of paper that you can show to him/her. Then try to relax as much as possible, and let the system proceed.
Good luck, and keep us posted.

Jump to this post

@jeffrapp @johnbishop @rwinney Jeff,
thank you for your kind reply. 10 years ago they did the punch test and it came up positive for small fiber neuropathy. i apologize if it sounded like i want to tell the dr what i wanted done. its more the questions to ask and the best way to discribe the symptoms. as you can tell from the way i wrote myoriginal question, im not that good at being clear

also i know that everyone has different symptoms, but im trying to see if beside the numbess and tingling, do others here with sfn get chattering teeth, tinitus or hed cloudiness and would consider it from their sfn?

REPLY
@albiet

@jeffrapp @johnbishop @rwinney Jeff,
thank you for your kind reply. 10 years ago they did the punch test and it came up positive for small fiber neuropathy. i apologize if it sounded like i want to tell the dr what i wanted done. its more the questions to ask and the best way to discribe the symptoms. as you can tell from the way i wrote myoriginal question, im not that good at being clear

also i know that everyone has different symptoms, but im trying to see if beside the numbess and tingling, do others here with sfn get chattering teeth, tinitus or hed cloudiness and would consider it from their sfn?

Jump to this post

I personally have not had those symptoms from SFN. I dont recall if you are on any medications that perhaps would have such side effects.

REPLY

@albiet, @jeffrapp, @johnbishop, @rwinney, Let me touch on the SFN symptoms, e.g. Tinnitus. Tinnitus became a companion of mine with the diagnosis of SFN. I am now going to try to observe whether the tinnitus becomes more significant when the numbness and needles (can't call what I feel, tingling) is also elevated. Maybe if I can keep the SFN symptoms under control better, those crickets of my tinnitus fame will play a lullaby or something less intense than the current chorus.

I don't think I would say that my foggy brain comes from SFN. Perhaps the anxiety created by the pain creates more anxiety and I just lose it. This issue may be medication-related. Since I rely on a medical cannabis regimen to manage pain, it is certainly possible.

Chattering teeth. Only once or twice, recently, have I noticed that my teeth were chattering beyond what one might expect from the weather. My life partner noticed on occasion and asked if was cold. These are great questions and we can all learn together. Be healthy and at peace. Chris

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@artscaping @jeffrapp, @johnbishop, @rwinney,
chris,
thank you for your reply. have you had sfn for a long time? what other symptoms do you have and how do you manage them?

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@rwinney

I personally have not had those symptoms from SFN. I dont recall if you are on any medications that perhaps would have such side effects.

Jump to this post

im currently on immipramine, which i have been on for many years and also take mirtazapine, which i have taken for the last month.

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@albiet

im currently on immipramine, which i have been on for many years and also take mirtazapine, which i have taken for the last month.

Jump to this post

@albiet

I've had tinitus for decades and have never thought that it could have been a symptom of neuropathy, but I have noticed that it seems to have worsened since I began treatment for sfn.

I also, among other things, take Imipramine and Mirtazapine. The imipramine seems to be reducing my pain in my feet. I take Mirtazapine as an add on for Wellbutrin for depression.

Like you, I think that I have other health issues that could be attributed to sfn, but doctors haven't given me an answer to my question.

Jim

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@albiet

@artscaping @jeffrapp, @johnbishop, @rwinney,
chris,
thank you for your reply. have you had sfn for a long time? what other symptoms do you have and how do you manage them?

Jump to this post

@albiet, @jeffrapp, @johnbishop, @rwinney, You are welcome @albiet. I am continuing to include the others so that they can chime n when it seems appropriate. My "losing" touch with my hands and feet began about 5 yrs ago. The pain/numbness in my legs and feet moves from below the ankles to below the knees depending on my activity level.

The pain in my hands, wrists, and arms followed the legs and feet. Cervical fusion was a good attempt to silence them but it didn't work as hoped. Therefore I am in a difficult situation.

I manage the SFN symptoms by controlling my activity, my diet, my weight, my other health factors, e.g. sleep, alcohol use. I manage my quality of life by being a daily participant in yoga and mindful meditation, an enthusiastic advocate for medical cannabis, and a committed mentor for Connect. Chris

REPLY
@albiet

@jeffrapp @johnbishop @rwinney Jeff,
thank you for your kind reply. 10 years ago they did the punch test and it came up positive for small fiber neuropathy. i apologize if it sounded like i want to tell the dr what i wanted done. its more the questions to ask and the best way to discribe the symptoms. as you can tell from the way i wrote myoriginal question, im not that good at being clear

also i know that everyone has different symptoms, but im trying to see if beside the numbess and tingling, do others here with sfn get chattering teeth, tinitus or hed cloudiness and would consider it from their sfn?

Jump to this post

Hi @albeit
I did a very quick search for relationship between SFN and tinnitus. The only thing I found was tinnitus and SFN as a result of chemotherapy.
I also have tinnitus, but it preceded the SFN.
Tinnitus is usually caused by hearing loss. The brain manufactures sounds, because of the lack of input. That's why when people get hearing aids, the tinnitus is often reduced.
I'm pretty sure my hearing loss/tinnitus is caused by too much loud rock'n roll back in the day.
Also, by definition, PN is a disease of the peripheral nervous system. Problems with hearing, chattering teeth, and foggy thinking all would involve the central nervous system, so I think PN is an unlikely cause. However, as we all know, this is a strange disease, so I wouldn't bet on that.
Don't try to come up with your own diagnosis. Just tell the neurologist all your important symptoms, but try not to overwhelm him/her with every or short lived symptoms you can think of.
The frustration you feel is understandable. It would be helpful if you understood that the medical providers are also frustrated, and often can't come up with an answer to everything. As an example, my SFN is idiopathic, which means unknown cause. I know how it feels.
Jeff

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@albiet

im currently on immipramine, which i have been on for many years and also take mirtazapine, which i have taken for the last month.

Jump to this post

Hi there. It is always beneficial to investigate side effects of meds to rule out as cause of symptoms first. On occasion side effects from meds and diagnosis can certainly share commonalities. SFN has been a very confusing diagnosis for me due to its plethora of symptoms, many of which match side effects from my current meds. My advice on meeting with your Dr is to keep a notebook handy and list each and every question as it pops into your head. Give yourself time to accumulate questions then re-read them days later. Once you compile a good list and look back at it a few times, certain questions may seem less imperative as time passes. Also, you may find that you can resolve some answers yourself via Google, forums, etc… As your appointment approaches, prioritize your questions and list no more than 10, keeping them straight forward. Less is more. Once in the office you start with your top questions and work your way down. Chances are most Drs can't or won't spend too much with you so make it count and get to the point. Good luck going forward.
Rachel

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It appears that some people have tinnitus and neuropathy as I found this on the site: https://connect.mayoclinic.org/discussion/ear-tinnitus-and-pain-with-neuropathy/

I'm sure I read/saw somewhere that they ARE related. Perhaps in a video that was recently posted with the doctor doing a presentation on SFN???? (Albeit – if you can find that video, I highly recommend it!)

As for the rest of the symptoms – it's possible there are multiple things all going on at once and the symptoms are not related…

I would identify the 3 – 5 loudest/most frequent sensations or issues and talk to the doctor about those.

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