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

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.

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.

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?

That is a great reply Jeff.

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

@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?

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.

@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

@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?

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