[smae]

Hello everyone
I'm new here. My name is Sarah Mae. I'm 24 years old and from South Dakota. I recently (in May) graduated from college with a degree in Elementary Education. However, last August I had gastric bypass surgery. In December, I started to have some pain in my feet. I didn't think anything of it, and started my student teaching semester in January. The pain started to get worse and worse--to the point where I would stand up and teach for 8 hours and then come home and cry for 8 hours. I couldn't stand the pain, but my doctor couldn't figure out what was wrong.
I went to doctor after doctor, and nobody knew what was going on. Finally my mom took me to Mayo Clinic in Rochester, MN. Four days of painful tests later, they told me that I had large fiber peripheral neuropathy. I was on gabapentin at that time, so the doctor had me increase my dose to 2700 mg (slowly, of course). I did, but it didn't help.
I have been working with my neurologist back home here (an hour away from my home), and he has switched my medicines a few times. The gabapentin didn't work. We tried topamax and amitriptilyne (sorry if I'm spelling these wrong) and now I'm on Lyrica... but that isn't working yet either. I'm so frustrated, because I am in incredible pain.
I have been reading posts from people, and it seems like the majority of you have small fiber PN. I can't seem to find any good information on large fiber PN on the internet--can anybody help me? I have all the symptoms of small fiber PN--I have the burning, the electrical shocks in my feet... but the tests show I have large fiber PN.
I am bedridden at this point because the minute I swing my legs over the side of my bed, my legs turn purple because the blood rushes down to my legs and feet... and doesn't pump back up.
My neurologist said that my neuropathy is a result of the gastric bypass surgery. It's because my body stopped absorbing vitamins. It's not that I wasn't eating well enough... it wasn't my fault at all, but it was just my body. He said that this is one of the most severe cases of neuropathy--and the worst that he has ever seen. I am in bed 24/7 except when I walk less then 10 feet to the bathroom.
Nobody around here understands this. I don't know anyone with neuropathy or anyone who even knows what it is. So I'm hoping to meet some people and really... to make some friends here that I can relate to.
Depression goes hand in hand with chronic pain. I have had chronic pain since I was a child, because I have degenerative disc disease and other things (arthritis and things) in my back... and I am very thankful that I do not deal with depression. I have bad days, but I am generally in high spirits. But I would just really like to find some people that can relate to my situation.
Now that I've written a book... I'm not sure anyone will read and respond... haha... but I really would like to know if anyone has any websites that explain the difference between small and large fiber neuropathy... because I don't know what the difference is... thanks for reading!

[mrsD]

Oh, that is terrible. I thought the bariatric surgery directions made sure that you get the proper vitamins! Most bariatric patients I've seen have to use liquid ones.

Also affected is fatty acid metabolism. This condition occurs in other people who lose alot of weight suddenly..and appears in the literature sometimes as "slimmer's paralysis".
The insulation of the nerves is composed of fatty acids, and when these are no longer eaten from food, the nerves cannot maintain themselves. B12, folate, and B6 + omega-3s are crucial to the nerve sheaths.

One bariatric patient I used to see, developed chronic low blood pressure from nerve damage. She was always fainting. I always wondered what happened to her, when I moved on to another location.

I think you will need intensive nutritional support, and maybe IV vitamins to help you get over this serious side effect.

[smae]

Thanks for your reply. I took a long list of vitamins before surgery as well as after surgery. I am taking even more vitamins now. It's not that I am not taking them--it's that my body wasn't absorbing them correctly. I took large amounts of vitamin D for several months--50,000 IUs... and stayed at less than 4 IUs (when you should be between 30 and 100 IUs). My body just wasn't absorbing it for some reason, even though I was on the high dose for several (7 or so) months.
I just can't seem to find any information about large fiber neuropathy. I don't know what the difference is between small and large fiber PN is.
I have been told that neuropathy after GBS has a good chance of going away... though with this being such a severe case, it may be like this for life. Who knows...

[mrsD]

If you are taking the D2 RX 50,000 IU's ...this form generally is far inferior to D3.

You can get your D from the sun too.

You may have to get some IV support for your vitamins soon.

Long fiber damage is to nerve axons that have a myelin sheath.
This is going to affect motor functions as well. Unmyelinated fibers are basically sensory in type.

This article explains the different types.
http://www.ninds.nih.gov/disorders/p...neuropathy.htm

[smae]

Sorry, I should have been more clear in my last message. I am not sure what the 50,000 was... but I was also taking 5,000 IUs of D3 a day. FINALLY, I had blood work done in late June and my Vitamin D level was at 66. So my level finally straightened out. In fact, my B12, D, and all my other levels are all back to normal as of my June blood work. I'm still taking my vitamins and getting my monthly B12 shot. So I think I'm in the clear as far as the vitamins go.

But, of course, the neuropathy is still here. The damage is already done.

Thanks for the link. I am going to go look at it right now.

[Kitt]

Excellent article.

[echoes long ago]

normal levels of b12 may be based on out of date numbers. as far as b12 goes you should be taking it everyday and not depend on a once a month shot to provide you what you need. you are going to have to do some research here on some of these topics to understand all that is being discussed. as im sure you have deduced, since your pn resulted from vitamin deficiencies due to your bariatric surgery and even with treatment with vitamins since then your symptoms continue you need more than what you are getting now or vitamins that are not being supplied to you.

actually most people have large fiber neuropathy who have PN. It is what shows up on an emg though it may not show up until enough damage has been done. i have large fiber pn with axonal involvement affecting the sensory nerves and to a lesser extent the motor nerves. The myelin sheath around the large fiber nerves are also being affected because of the degeneration of the axon. some people with large fiber only have axonal involvement or demyelination of the myelin sheath. there are also people with mixed large and small fiber neuropathy.

[Kitt]

Yes, CMT, for one, falls into that explanation.

[smae]

Originally Posted by echoes long ago

as far as b12 goes you should be taking it everyday and not depend on a once a month shot to provide you what you need.

I definitely do. I take a multivitamin that has 200% the daily recommended value of B12 and also take an additional B12 supplement. I don't just rely on the B12 shot.

Everyone that I've seen on here has said they have small fiber PN.. you're the first to say they have large fiber PN. As I said in my original post, I also am having a hard time finding any good websites about large fiber PN. I have all the symptoms of small fiber PN, so I'm not sure why my doctor says I have large fiber PN... but then again, since I can't find out in simple terms what it is and what the differences are, who knows. I just want to find out in simple terms what the differences are in terms of symptoms and such.

[Kitt]

Originally Posted by Sarah Mae

Everyone that I've seen on here has said they have small fiber PN.. you're the first to say they have large fiber PN. As I said in my original post, I also am having a hard time finding any good websites about large fiber PN. I have all the symptoms of small fiber PN, so I'm not sure why my doctor says I have large fiber PN... but then again, since I can't find out in simple terms what it is and what the differences are, who knows. I just want to find out in simple terms what the differences are in terms of symptoms and such.

mrsD has a really good site on this thread to click on concerning it all. Did you check it out? I have both large fiber PN and small fiber PN with CMT which is an inherited syndrome. It is mentioned on the site she gave which really explains it all well I think.

Here it is again. http://www.ninds.nih.gov/disorders/p...neuropathy.htm It explains the difference and a whole lot more. It is an excellent site.