Neuropathy

[gjensen]

I have found out that I have small fiber neuropathy. I know that there is a lot of possible causes. Auto immune tests are negative, so far.

I have not, but am beginning to try getting my head wrapped around this. Possible causes. Treatments. Prognosis.

Does anyone with neuropathy get any improvement? How may people have it? From what? What kind of help have they received?

[davecom]

Hi gjensen,

Sorry about your diagnosis, although it's not too surprising if you have POTS, since it's the cause of 50%+ of cases according to Mayo's studies. There is definitely hope. SFN can reverse if the underlying cause is identified and treated. In some cases of POTS, it is thought that a freak autoimmune reaction to a virus led to the small fiber autonomic nerve damage. That is what is thought to have happened in my case. Typically, according to my neurologist, who is an autonomic neuropathy specialist, the nerves can regenerate over a 2-5 year period if there is no underlying other cause (i.e. no long term autoimmune disease, diabetes, etc). There are supplements that can be helpful for peripheral/small fiber neuropathy. I'm taking r-lipoid-acid under my doctor's guidance. We're also going to be adding l-carnitine into the mix. If you do some Googling for small fiber neuropathy supplements you should be able to find more information. There have also been some studies done in Europe.

Kind regards,

David

[gjensen]

Thank you for the very good response David.

I started taking the r-lipoid acid supplement. You mentioned under your doctor's guidance. Is there anything that needs to be watched out for with this supplement?

My tests for auto immune diseases have come back negative. I have not looked into what might be missing. Yet.

It sounds like you are with a good doctor. I like that mine is being as thorough as he is in digging into possible causes. I will admit that I am getting ready to start doing something about it. I am getting worse, and not better.

Again, I appreciate the thoughtful response. I will start digging into this, this weekend. It took me a while to figure out what was happening to me, and to get in front of the right people.

[davecom]

He told me it's really about how much you can tolerate digestively (tends to cause acid production for people). He also, (smartly in my opinion) cautions against starting too many supplements at the same time, since you don't know what's doing what then. The studies done were with 600 mg of intravenous s-lipoid-acid daily. My understanding is that the r-form is more bioavailable. I started with 100 mg/day and recently went up to 200 mg/day. He told me to feel free to go even higher than that if I'd like after trying out the 200 mg for a while.

There are literally dozens of possible causes of small fiber neuropathy. However, by far the most common cause is diabetes or pre-diabetes. Getting a glucose tolerance test is not a bad idea. Mine was within the normal range, but just barely. Having glucose spikes and a high carbohydrate diet is certainly not helpful for POTS or SFN. I have also run into several people who have POTS caused by sjogren's syndrome (an autoimmune disease) who were negative by blood test for sjogren's. The sjogren's antibody blood tests are only 70% sensitive. I ended up getting the lip biopsy for sjogren's (pretty painful but supposed to be fairly definitive) which was negative in my case. The first sign of sjogren's can be small fiber neuropathy. If you want to get the sjogren's lip biopsy it might be quite a battle to convince a doctor to do it for you.

Anyway, I'd keep looking if I were you. I feel like I'm at a similar stage to you (confirmed SFN, POTS, with no positive blood tests). I've run out of tests to get for now as far as underlying causes go (since I have no evidence to justify any others), so I'm starting to be more hopeful that in my case it was just a freak one time reaction to a virus as my neurologist, and some other doctors believe.

I'm sorry you're getting worse. Are you doing an exercise program, tons of fluids, salt - all the standard stuff?

[gjensen]

David, similar to the logic your doctor uses I am trying one thing at a time.

I do not have an exercise program per say. I want to save that for doing something constructive if I can. For example I finished putting pine straw around my blueberry beds today. 300' of them. Fed and watered my birds etc. I probably walked a mile doing it.

These things make me feel better mentally. I am paying for it now though.

Fluids is a problem. My stomach gets slow, so I do what I can. I do push it. I am going to ask a local doctor about IV fluids semi regularly to help with that. I am starting to add salt.

I think that it is interesting that you mentioned that pre diabetes can cause neuropathy. I bought myself a blood sugar monitor. I had some spells that reminded me of high blood sugar symptoms. I di not think that is what it was but I wanted to check.

I decided to check my blood sugar before I ate anything this morning and it was 110. I thought that was a little high for an empty stomach.

That is a test my neurologist wanted to do next week. He also mentioned doing a lip biopsy if this round of tests did not show anything.

I do have a good neurologist concerning looking into causes. I am very pleased with Duke University. They just have to send you to UNC for the autonomic testing. The care between the two places is not comparable though.

[davecom]

Yeah that is a high for a purely fasting glucose. I think you may want to get those workups that your neurologist suggested. It sounds like he's on top of things. How refreshing!

PS You're saying Duke hospital is better than UNC in general? I've found the same thing with big university medical centers. The private university hospitals are always better.

[gjensen]

I would not want to come across as bad mouthing one. I am comparing an experience that I have had. I had a UNC doctor suggest this might be in my head. That does not reflect on them all together.

However, I could not imagine getting better service than what I have at Duke. All of the staff and doctors have been great. Out of 8 appointments (different dept and doctors), I have not had to wait for a single one. Every one has been on time.

Tests results are messaged to me as they get them. If I message a doctor, I get a response within a day. The neurologist is not a sub specialist, but in my case that could be a benefit. I am not getting a quick diagnoses and being sent home with a treatment plan. They are digging to find the cause. This neurologist recognized my problem immediately. That is much different than what I have gotten used to.

I could not say enough about my experience at Duke. They are very thorough. Like most of us here, I have a lot of symptoms. They are investigating every single one. Might mean seeing a couple different doctors, but they are less likely to miss something.

[looneymom]

It's good and refreshing to hear that a doctor is trying to dig for the underlying cause. So many doctors want to stop at the diagnosis. Neropathy can have many causes and trying to find it is like searching for a needle in a haystack. You are very fortunate to have doctors that are willing to do this for you.

As far a supplements go, my son was on the lipid acid and the I-carnate for 6 months. However, he never felt any improvement relief from this combination. Our cardiologist thinks his neuropathy pain is from the high antibodies that have recently showed up on a test. My son's POTS condition looks to be immune related. He is taking a probiotic and has started taking Symbiotic Colostrum Plus to help boost his immune system. We are hoping if we can boost his immune system then maybe some of the pain issues will settle down. Have your doctors checked for any immune related things? This might be another route for your doctors to go if they come up with negative testing.

Rachel

[gjensen]

LooneyMom, This doctor did the Mayo panel on the first visit. They all came back negative. Now, I do not have a grip on what some of those tests are, and I do not know what the other possibilities could be. I have had a lot of blood work drawn. It is time for me to get a grip on all of this stuff. As I said, it took me a while just to figure out that what was troubling me was autonomic dysfunction.

I have considered an auto immune type condition, because of the speed of the progression, and that it continues to progress. I also wonder about an inflammatory type response.

The way my logic works, it seams that supplements like lipid acid etc. could be helpful once the immune response is settled down. I think it is interesting that you mentioned the Colostrum. I have thought back to it, but not considered using it. My thoughts were related to animals. It is used in young livestock that is failing to thrive, and it does boost the immune system. Have you read anything that implies that it could settle the immune system down?

I checked my blood sugar this morning and it was not high. 88. I checked it after eating last night and it went to 384, but was 125 an hour later. I do not think I have a blood sugar problem, but might be considered someone that could develop one in time. This is something else that I do not know a lot about. I will let them rule that out though.

Rachel I have read some posts about you and your son. I hope that you get all of the answers that you need soon.

[looneymom]

This afternoon I googled pdf studies on humans and bovine colostrum. The research has been done but you need to be careful where you purchase your supplement if you go this route. I have purchased the Symbiotics Colostrum Plus for my son. My husband and I would like to avoid an IVIG treatment plan if at all possible.

Rachel

[davecom]

LooneyMom, This doctor did the Mayo panel on the first visit. They all came back negative. Now, I do not have a grip on what some of those tests are, and I do not know what the other possibilities could be. I have had a lot of blood work drawn. It is time for me to get a grip on all of this stuff. As I said, it took me a while just to figure out that what was troubling me was autonomic dysfunction.

I have considered an auto immune type condition, because of the speed of the progression, and that it continues to progress. I also wonder about an inflammatory type response.

The way my logic works, it seams that supplements like lipid acid etc. could be helpful once the immune response is settled down. I think it is interesting that you mentioned the Colostrum. I have thought back to it, but not considered using it. My thoughts were related to animals. It is used in young livestock that is failing to thrive, and it does boost the immune system. Have you read anything that implies that it could settle the immune system down?

I checked my blood sugar this morning and it was not high. 88. I checked it after eating last night and it went to 384, but was 125 an hour later. I do not think I have a blood sugar problem, but might be considered someone that could develop one in time. This is something else that I do not know a lot about. I will let them rule that out though.

Rachel I have read some posts about you and your son. I hope that you get all of the answers that you need soon.

384 is very high. I wonder if that was not an inaccurate result. Either way, low carb diets tend to help POTS by reducing the amount of blood flow needed to the gut.

[gjensen]

I double checked that result. It only varied by a few points checking another finger.

I read that checking it an hour two later is better? It had dropped substantially an hour and a half later.

I have run out of strips, but I will keep checking. I was in the normal range yesterday morning. 88? I think.

[gjensen]

This afternoon I googled pdf studies on humans and bovine colostrum. The research has been done but you need to be careful where you purchase your supplement if you go this route. I have purchased the Symbiotics Colostrum Plus for my son. My husband and I would like to avoid an IVIG treatment plan if at all possible.

Rachel

I think that is a fascinating subject.

[davecom]

Even if it came back down, that's quite a shock to the system if that was a real reading and if that's happening regularly. Was it after eating like a 7-11 slurpee

[gjensen]

Even if it came back down, that's quite a shock to the system if that was a real reading and if that's happening regularly. Was it after eating like a 7-11 slurpee

No, not a slurpee. LOL.

Was not a dieticians dream either.

I have a swallowing problem with this condition, so I have to be selective. Unfortunately many of the easier to swallow things with the Thanksgiving dinner was high carb/sugar. Soft roll that I picked at, yams, cranberry sauce, mash potatoes, etc. Then I topped it off with an ensure drink which does have sugar in it. I did not eat much, but what I ate was not good.

I am going to get me some more strips and monitor this. I spoke to my father which is diabetic and the highest he had seen is 280. Makes me wonder about the results to. Just got similar results twice . . .

I may have mentioned this, but the reason I bought this was a couple episodes that seamed that it could be high sugar related. I could not explain why I could have spikes like that, and then be high normal not too long after.

I suspect that in time, I will find that incident to be a fluke.

[looneymom]

http://www.gotwater.net/colostrum_report.htm

Hi gjensen,

I'm not good at doing hyperlinks but I found a book on colostrum written by Dr. York. It's called Colostrum: A Journey Toward better Health. Thought you might want to look at it. Hopefully it will work for you.

Rachel

[gjensen]

http://www.gotwater.net/colostrum_report.htm

Hi gjensen,

I'm not good at doing hyperlinks but I found a book on colostrum written by Dr. York. It's called Colostrum: A Journey Toward better Health. Thought you might want to look at it. Hopefully it will work for you.

Rachel

That was very thoughtful of you. If anything this disorder might do for me, is teach me how to use this computer.

I will certainly review this and share with a person that I know is interested in this topic. I look forward to the reading.

[Anoj]

FYI, i have read that the lipoic acid can cause thyroid medicine to not be as effective. i'm currently in the middle of dosage adjustments on thyroid, but i plan to take the alpha lipoic acid once i have a good baseline established and adjust thyroid meds accordingly.

[gjensen]

I had the ANA tests come back positive today.

[gjensen]

If anyone wants a doctor do dig into why they have dysautonomia (be careful what you ask for), consider Duke. They have gotten an awful lot of work in, in the last five weeks.

Two swallowing tests. A GI test. Skin Biopsy. Four orders of labs. The lab orders were extensive. Thought I was going to have to ask for Saline to help replace all of the blood. Somewhere around 4 dozen vials of blood.

[davecom]

Was it a generalized ANA or for a specific nuclear antibody? Are they going to diagnose you with a specific autoimmune condition?

[gjensen]

Dave, I do not think they were specific. I have not discussed it with the doctor. The results were on my "Duke chart" (web page) when I got home today. There, may be a message from him concerning it now. They send you everything as it comes in. I never saw him about these labs. He asked if I could come by and get him when I was up there for something else.

If there is not a message, I intend to ask. Have you had these tests?

[gjensen]

Also, if it could be made specific.. . . this doctor will chase it until the road comes to a dead end. Probably more tests . . . lol.

[gjensen]

OK. The doctor's note is that we should wait for the rest of the labs to come in before we try to draw conclusions. Apparently some healthy people test positive.

There are two ANA tests listed. One just shows that it is positive. The other is a panel and has more specific results. My result is 1:160. Antibody 1, Speckled.

[davecom]

Yes, I've had several different ANAs... All negative in my case, however of course you're right - a positive ANA is not definitive of anything on its own.