NeuroTalk Support Groups - No-one Can figure out My Peripheral Neuropathy

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- - No-one Can figure out My Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/50977-figure-peripheral-neuropathy.html)

please check those two results... B12 actual number, and
the bicarb test (you may not have had it)

Vancomycin is absorbed orally....not much but enough over time and also in some circumstances such as GI inflammation may increase blood levels.
http://books.google.com/books?id=F0n...sult#PPA329,M1

Vancomycin is a known PN causer.

Xifaxan is less absorbed...3% or less.

When a young person gets PN one really has to consider toxins, and drugs first. Also hereditary PNs like CMT--Charcot Marie Tooth can be tested for.

The elevated fasting insulin suggests the beginning of insulin resistance and may in females point to PCOS as well, or elevated adrenal functioning (but you said you were tested for this already--Cushings?)

I was 30 when my hypothyroid problems started in my feet.

I think diabetic PN is not likely for you yet. It takes TIME to develop and you are young still.

Most sarcoid patients have it in the lungs. But it can occur anywhere. There is a forum with information on this and a novel treatment. Google The Marshall Protocol ( we cannot link to other health forums here) and check sarcoid out. Even if you do not get that treatment, there is info there that may help you understand this better.

Hello, I have subscribed to the forum only to comment on your post.

Because of your multisystemic ailments, the fact that you say your foot
pain got worse after steroids and living in MA tell me that you need to checked
out for Lyme disease by a specialist.
Going to a non-Lyme specialist for this diesease is like going to a dentist for
brain surgery. Please visit and post in the "seeking doctor"
forum so that someone from MA can recommend a LLMD (lyme literate doctor).
The standard screening test for Lyme (ELISA) is about 50% sensitive and this
number is lower if the disease is chronic. You need to have western blot done
at a lag that specializes in tick borne illnesses such as Igenex so that your
LLMD can look for specific Lyme igm/igg antibodies.

I have had almost the same symptoms as you (neuropathy, stomach problems, ellergies, mood swings, eye pains etc.) and am doing much much
better after seeing a LLMD doctor.

Again, please don't leave this stone unturned. You would not believe how
many go around with "autoimune" dieases, yet have bacterial/viral infections
at the source of the problem.

Quote:

Originally Posted by chamade (Post 359445)

Thank you for posting.
1) foot pain got better when I was on the steroids. It did not get worse, after they were withdrawn, the problem just returned.

2) How can I get lyme disease if I haven't been anywhere near ticks? I don't go in wooded areas, I don't own pets, and I don't have any symptoms that are the most common of lyme disease, such as:
a) "early localized disease with skin inflammation" aka rash or tick bite.
b) "early disseminated disease with heart and nervous system involvement, including palsies and meningitis" I have had no paralysis, and I have never had meningitis or anything like it; and
c) "late disease featuring motor and sensory nerve damage and brain inflammation and arthritis" I have lost no motor function, and I have no brain inflamation or arthritis or similar. The only nerve problem I have is pain, and some sensory loss on the bottom of my foot behind my first three toes.

Quote:

Originally Posted by mrsd (Post 358345)

Hi!
Thanks for your help. I will look up about those tests.

I agree that diabetic PN is not the most likely, and my endochrinologist agrees. He thinks if it is a cause it is only part of the problem... not the whole problem.

I looked up about CMT, but it doesn't seem to fit. My muscles are fine.

If I haven't been on Vancomycin or Xifaxan for over 6 months before the problem started, I don't know if that could be the cause. I will ask my gastro though.

And as for the "The Marshall Protocol" I can't find anything about sarcoid on their forum... maybe I am just doing it wrong though. :rolleyes:

Quote:

Originally Posted by Macophile (Post 360820)

The FAQs section of that forum has alot of info.
The whole forum is based on a treatment of sarcoid. Their treatment however is not commonly used by most doctors yet.
The sarcoid info in the FAQs portion is very long, and based on many patients there asking questions.

here is another link:
http://www.stopsarcoidosis.org/sarco...FQsiIgodIybOiw
which lists symptoms.

There is also a relationship to Vit D and sarcoidosis:
http://www.sarcinfo.com/faq.htm

So you should get that tested also if sarcoid is suspected.

If your PN is confined to the feet, I also think a good evaluation by a podiatrist is needed. Many foot issues can cause pain there. My son has a pronating ankle which was minor and not visually obvious, and had terrible pain when he started college and had to walk miles per day. A simple orthotic changed that completely.

The Rheum. have started me on Methotrexate http://www.nlm.nih.gov/medlineplus/d...r/a682019.html ,which is scary as it is used to treat Lupus, Cancer, and other scary sounding things, but so far it does seem like it might, possibly be doing something. (I have been on it for 3 weeks now, only one week on the intended dose, though.)

Now though, I seem to have developed a side-effect from the Methotrexate. I have been itchy for the past few days. No bumps, rashes, swelling, redness, etc. I look normal except for the itch. If anyone has had itching as a med. side effect and knows how to lessen it please help! And if anyone has any ideas about anything I'm open to them!

benedryl is often used for an allergic reaction to medication but i think you should contact your doctor and let him/her know the reaction you are having. Allergic reactions can become worse over time after repeated exposures.

Quote:

Originally Posted by echoes long ago (Post 368834)

Thanks.
I did call my Dr. (Before I posted on here, actually...and she was going to call back within 48hrs.) She says she doesn't think the itch is from Methotrexate, as the itch associated with that 99% of the time involves rash. But she suggested taking Benadryl every 6 hrs. I have been doing so and it seems to be helping... I just hope the itch completely goes away soon.

Quote:

Originally Posted by jakervik (Post 377310)

I also have small fiber PN. I've had it for over 4 years. My glucose level has been around 208 and I do know that sweets, alcohol, and stress effect my feet. I take Lyrica and tramadol. You walk on your feet and that is so difficult to deal with, because there is no end to the pain. Mine has stayed on the bottom of my feet, and it hasn't spread.

I can sympathize. My sugars were never that high (which is one reason the dr's were not sure that the sugars were the reason/whole reason for the foot problem). They took me off tramadol, and I wish the lyrica/other drugs worked better, but the neuropathy I have has moved off the bottom of my feet... it's about up to my ankles now, or can be as it is random, but there is always some part of my feet bothering me, it just isn't always the exact same spot.

But I agree about the walking on them making it worse. There isn't much you can do to make is better either. nothing seems to work. The only things I found that even remotely work are a) sitting on them to stop the feeling in them and they go to sleep basically or b) rubbing them or getting someone else to rub them. Apparently pain receptors are overridden by touch receptors. (Who knew!) I hope your feet feel better. (mine too.) :)

Well, the methotrexate might be doing something. I no longer feel like I need to take double the amount of pills (I haven't been, but you get to a point where you feel like it might help) to get to a tolerable pain level. (And by tolerable I mean I am not screaming every 5 seconds... but it is still not improved enough for me to function properly.)

We will find out Nov. 14 (appointment with Rheumatologist) if the methotrexate is making any improvement in terms of my blood tests, which will be interesting to see. I just hope the pain keeps going down, and stays that way. If anyone has any ideas or suggestions please let me know. :)

It's amazing, but I have been sleeping :Zzzz: though the night (or at least 98% of the time) for almost a month now. :thud: This might actually be progress! :grin:
Now if I could just get the pain to be less during the day, and when I do things. :smileypray: Then maybe I could start functioning in society again.

Macophile: if chronic pain is still an issue for you then I have a question. Have any of your doctors mentioned the Duragesic Patch? If the answer is no then you might wish to try it.

I've had PN for nearly 21 years and suffered horribly for 14 years. I saw lots of neuros and some 'pain specialists' and tried everything from Neurontin to Lyrical...all without success. One day my PCP (primary care physician) asked if I had ever used the Duragesic Patch. The answer was no so we tried it...started on the 50 strengh and progressed to the 100 strength over a period of several months. When we got to the 100 strength my 7 to 9+ levels of pain instantly went down to a 2 to 4 level. Today, some 6years later, I am still using the Duragesic Patch (well, the generic patch which is called the "Fentanyl Transdermal System" and a bit cheaper) and my pain levels are still at the 2 to 4 levels which to me is very low and I tolerate it very well. On 3-19-07 we went to 125 strengh patches and I change them every 48 hours. I take NO other meds for pain!

I am able to function normally and have full control of all my faculties and I drive my car without incident. After all this time my eyes are clear and hands are steady. The patch contains the narcotic Fentanyl which is a powerful pain reliever and should only be used when lessor pain relievers have failed. I am now 76½ years old and walk a mile+ every day and use only my cane. And, no, I am not addicted. One becomes dependent but there is a huge difference between addiction and dependency - you can research this. People who have true chronic moderate to severe pain rarely become addicted to prescription narcotics despite what many doctors believe. The average is about 1 percent though some argue it's as high as 3 percent. This will give you some insight:

http://www.letstalkpain.org/health_care/experts.html#

On the left side of the page you will see: 'Let's get real about treatment'. When you put your cursor on this you will see: 'The truth about Opioids'...click on it. The ONLY side effect I have experienced is constipation which I control with Fiber-sure available with-out prescription at your local pharmacy.

You will learn a lot from this site so check it out. The use of opioids in treating chronic pain is being recognized by more and more physicians as an excellent means of treatment. Physicians are slowly but surely learning that chronic pain is a legitimate medical condition worthy of the best the medical profession has to offer.

Good luck and never ever give up. I have PN but PN does not have me!

Quote:

Originally Posted by Macophile (Post 334573)

I have been having MED. problems since May 2007, and no-one can figure it out. I am hoping maybe someone can help me... If anyone can think of anything please let me know. And I THANK YOU in advance for bothering to read all of this. <3

I am a 21 yr. old Female who does not drink or smoke. I have migraines, allergies, unexplained rapid heart rate, irregular periods, and IBS.

In May of 2007 the first three toes on my right foot went numb on the bottom and then I proceeded to get pains in the foot (these developed and got worse over time, and eventually occurred in both feet (and are worse when lying down). Now I also have a degree of "numbness" on the left foot's first three toes on the bottom as well. This pain is very severe, and greatly inhibits my daily life. It can vary between a Burning, Tingling, pins and needles, stabbing, burning itch, or sharp ache sensations. Sometimes several of these sensations at once.

I then Developed Optic Neuritis (In July of 2007), and was put on high dose IV steroids and then pill ones which were slowly tapered down. (thankfully my vision has mostly returned.) While on the Steroids the Pain in my feet was dramatically reduced and once off the steroids the pain returned full force, and has since then gotten continuously worse.

They have done MRI's of my spine (all of it) that show some of my disks are pressing in a bit on my spinal cord, but the Dr's say this is not what is causing the problem. They also said I had degenerative disk disease, but that that can be seen in almost everyone, and is not causing the problem.

The Neurologist did 2 EMG's (separated by about 6months) both of which show slight abnormalities, but nothing concrete to make a diagnosis.

I was given a Spinal Tap (OW!) by my neurologist, the results of which were clear and normal. I saw a Spinal Surgeon to make sure the disks pressing on my spine were not causing a problem, and he says they are not. I was sent to a metabolic specialist, who also cleared me of all things metabolic.

My Neurologist sent me to his mentor (is this a good sign that I have so baffled a doctor he has to send me to his teacher?) who thinks it is small fiber nerve disease and decided we should do a punch Biopsy. The biopsy shows I do have Peripheral Neuropathy.

I was sent to a Endocrine Dr. And he cleared me for a tumor on my adrenal gland, but found my Insulin and glucose was slightly elevated. I passed the glucose tollerance test, but he put me on medicine to bring down my Blood sugar anyway to see if it could have been the cause of the
Peripheral Neuropathy. As far as we can tell by now it isn't. (In fact, my feet are still getting worse.)

Though all this My Pain clinic doctor was trying steroid injections in my Back (ESI's) which didn't do much. (This first helped a bit, but the second did not.) He then put me on Lyrica to see if that will help the pain. It did at first, but around the time of the dose increase (to see if it would help more) the symptoms worsened again, and now the Pain Clinic Dr is saying the Endocrinologist should be handling the issue since it is cause by the blood sugar. Now we can be pretty sure it is not being caused by that so now I don't know what the Pain Clinic will do as he is not very willing to do anything.

I went to a Rheumatologist for the second time In June of 2008, and They think I might have Fibromyalgia, but they do not think that is causing the problem with my feet. They origionally thought I might have Rheumatoid Arthritis, but when I came in for the Ultrasound on my feet the man who was going to perform it took one look at me and asked: "How long have your parotid glands been swollen?" I was confused, but he did a few other tests (feeling glands, and asked me about my history) and then did the ultrasound. The ultrasound showed nothing of interest so I apparently do not have RA. But now they think I have Sarcoidosis due to my swollen glands, my history of Optic Neuritis, and Erythema Nodosum. They say that even though the Chest X-ray I had was clean, I could still have it, as 5% of people who have it do not have lung involvment. This diagnosis could explain the foot problems, the Optic Neuritis, and the Erythema Nodosum...

I then Had a Gallium Scan 2 weeks ago, the results showing only a slight abnormality in my Parotid glands. Now they are Going to do a high contrast CT of my Lungs, then the doctor will look at all the evidence, and if it is still confusing enough/ compelling enough they will do a Biopsy.

Other Info:

The only surgery I have had: Tonsillectomy.
My Blood test results for all diseases like lyme, and HIV are neg. as well as my B12 levels and other levels doctors have checked except my CED (?) rate which is raised telling them somewhere in my body there is inflammation.
Of course the fact that the steroids helped my feet tremendously also should have been a clue of that inflammation.
I do not know my family history as I was adopted.

Drug List

Migraine
1) Amitriptyline- 10mg tablet (6 at night)
3) Topamax- 100mg tablet (1 at night)
5) Magnesium- 500mg tablet (1 at night)

Allergies/Asthma
1) Benadryl- 25mg caps (2 at night, or as needed)
2) Singulair- 10mg tablet (1 at night)

Irritable Bowel Syndrome/Acid Reflux
1) Florajen 3- 460mg caps (2 caps. 2x a day)
2) Protonix- 40mg tablet (as needed)

Period Regulation
1) Reclipsen- (Desogestrel 0.15mg, Ethinyl Estradiol 0.03mg) tab (1 at night)

Foot Pain/Problems
1) Gabapentin- 600mg tabs (4 tabs a day)
2) Lyrica- 100mg caps (1 cap 3x a day)
3) Baclofen- 10mg tablet (2 tabs every 8hrs.)
4) Steroid Injection in back (ESI)- 3/5/08, 4/9/0
5) Neuropathy #6 8-6-0.2-2-2 Gel (3-5x a day to painful areas)

I hate to suggest this - but maybe they dont want too i.e. more you suffer the more they gain $$

Anyone have any suggestions....

I don't know if anyone has this... but every so often my feet swell and the pain gets much worse... even once the swelling goes down the pain stays bad for several days... does anyone else experience something like this?

I mentioned this to the Dr. and she told me it was a flare of the auto-immune problem... well, great, but she had no idea how to prevent it or help it once it starts... does anyone have anything that works for them?