many PN questions for the experts pls!
 

Hi everyone. Just a brief overview first.
2.5 years of -Neurogenic bladder, numbness in hands in the a.m, burning sensations anywhere and everywhere except head, and gut wrenching stomach burning, bloating,pressure. Weak and painful forearms down to wrist both sides ,arthritis in fingers, painful to squeeze any finger. Pelvic pain, sensitivity, endometriosis, PCOS, and more recently, suspected fibromyalgia. Lucky eh!!!??
Take Lyrica 75 mg at night and oxycodone 20mg 3-4x daily
Age 29,female. No known cause of the neuropathy. Nerve conduction study Tuesday.

I take methylcobalamin 1000mcg every morning before eating. Tested many times and levels are good. Take vitamin d3 2000IU drops every day
Was taking alpha lipoic acid for many months, but ran out
Started L Carnitine complex ( so it has vit c, e, and coq10 in it) by Innovite.
I go to the gym for cardio 3-4 x a week. I do not drink alcohol.

Is there anything else I can do? I still suffer greatly and fight terror every single day that things will only get worse. The worst part is the way that my intestines feel like they are being squeezed and set on fire. Even when I press lightly on my abdomen it hurts like hell.
I've had ultrasounds and a laparoscopy,where they found endometriosis which was removed 1.5 yrs ago.

I feel like I am disabled. I need hope..I am beginning a new career and just met a lovely man.

Is there anything obvious I can do? Perhaps increase the supplements or lyrica?
Thank you kindly for your time.

I take supplements too, but mostly I eat healthy food. Get your thyroid checked because for years I was told my thyroid was normal and found out I had under active thyroid that went hyper and was suffering what I thought was a lot of anxiety/ autonomic symptoms and was finally diagnosed with Graves Disease. I had very high T4 and almost non existent TSH. Anyways I also find that a warm soothing bath takes the edge off every night and with my neuropathy there seems to be inflammation involved so I take Alka Seltzer. I also exercise and do Ballet. It's really hard because you are very young and should be more carefree. My PN started at 32 and I am 40 now. It actually went away for 3 years but surgery and a bad car accident in the same month sent my thyroid completely out of whack and the PN came back with a vengeance. By the way Kudos on meeting a great guy, enjoy that as much as you can. Try to keep the pain controlled and talk to your GP or whoever about pain management because pain if left to its own devices will ruin your outlook on life and self esteem. Your very young and have a long life to lead, therefore try to stay positive about all this, have a good support network in place, be active, and keep good records of all tests and treatments you have and what has worked, what has made things worse and so forth. You may find patterns over time and be able to manage this better.

Ps. With your Gyno problems it sounds as if your hormones may be out of whack. Estrogen & progesterone due to the PCOS and so forth. I have been reading up on how hormones affect our bodies and on a women's health forum, a surprising number of women on there claim they have neuropathy of unknown origin as they get closer to menapause. I know you are too young for that but hormone imbalances are a definite cause for neuropathy.

Best of luck,
Aussie

When so many things seem to be going wrong... one needs
to step back and analyze things.

For example...did the burning in your pelvic area become worse after the laparoscopies/surgeries?

Do you have edema at all...swelling of the face/neck?
Difficulty breathing? Difficulty bending over, or bending arms and legs?

Has your doctor done autoimmune testing? For lupus or other autoimmune markers? Testing for elevated blood proteins?

Do certain foods make the intestinal thing worse? Spices, peppers, etc? Sometimes keeping a log of what you eat at each meal, what activities you do, etc may show triggers.
Gluten intolerance is a huge masquerader and can affect lots of areas with painful symptoms. Other intolerances too, can be confusing. Sometimes with other foods like nightshades or lily family (onions/garlic), there are thresholds you can have, where one day is okay, but several days in a row, will give you symptoms. When this happens it is difficult to pin down, the culprits.

Have you been tested for Candida? This can cause burning all over. Have you tried thiamine or the newer form, benfotiamine?
If that works for you, then Candida is a possibility.

With the variety of things you described, I would definitely have some autoimmune tests done if you haven't already. For example, a starting point might be the ANA test. Those who have autoimmune disorders most of the time have a positive ANA.

Just curious, what do you treatment wise for the bladder? My small fiber neuropathy has been giving my bladder a terrible time here lately.

Good morning,
I am so happy to see all of these replies!
I'm sorry if I don't answer all of the questions on the first shot, but here it goes.

Thyroid - been tested more times than I can count. I know I am on the hyper side, because I am thin, jumpy, quick digestion, etc. Even a naturopathic doctor looked at the results and said it was fine. My only abnormal test results are always low creatinine levels, and low blood sugar. If I don't eat every couple hours, I am in big trouble.

Regarding immunological explanations - my neurologist that I just saw once a week ago said that she would refer me to a rheumatologist ( that could take up to 9 months here in Ottawa, Ontario)
However, she did give me a sheet for blood work which includes ANA, RA factor, and others, and I did that this morning.

Unfortunately, I have found nothing that helps the bladder. Obvious things like avoiding caffeine are a good start. I go to the washroom frequently, and have episodes of burning with no infection. I've had two cystoscopies, because we were convinced that I had interstitial cystitis. But no ulcers. Finally realized that it was a nerve issue, when everything else started acting up.

Mrs D- the burning in the pelvic area including thighs led to the laparoscopy.
I don't have edema, and no breathlessness. Well, sometime the opiates suppress my breathing but that is different .

I have been tested for food I tolerance, and the only big one that came up was eggs. So I avoid those. I eat so much and so often that I am not able to tell if certain foods affect me. I NEED to start a food journal.

I have done two candida cleanses. I didn't feel much different after. I do crave sweets, but I attribute that to my wonky blood sugars. I don't have any brain fog or fatigue ( other than an afternoon slump)

I'll leave it at that. Appreciate the responses. Let's keep brainstorming!!

Hi, I have had a lot of the problems that you have. Actually a few years before this started in my legs etc. I was dx'd with vulvadynia and vestibulitis.There are external creams you can use for this. Just like you they assumed I had interstitial cystitis. I did not. Ask you GYN to test for any and all yeast infections. I went to someone who specialized only in this and they found one. I had to use med for it for brief period and all the symptoms went away.

A few years after that I developed neuropathy. Idiopathic is what I'm told. I know you said you had food intolerance testing done but try a gluten free diet for a short period and see if it helps. I had terrible stomach burning and pain. I had my galbladder removed and lots of testing, The only thing that showed was delayed emptying. I started the gluten free diet and it took a little while but the burning went away. It did not help my other symptoms but my stomach does good these days. Also, I'm glad you have decided to keep a journal. It really helps to find what foods your neuropathy can't tolerate.

I think it is wonderful that you have been able to continue to exercise. It is also great that you have found someone. A strong support system is essential.

I don't know how you will feel about it but if you want to try meditating. It helps me so much with my emotional state. I started doing it to sleep but just recently I am trying to do it everyday. It reallly helps my attitude and relieves my worries.

Good Luck with everything!

Hi Feather,

I just wanted to comment on your post again. Back to thyroid, you say your on the high side of normal? In Australia T4 lab range is 9-19. At a T4 of 16, I had lost 1/3 my hair, lost 10 kilos in a month. I ate like a horse but within 5 minutes I needed to go to the bathroom due to increased gut motility. Also tremor,palps, frequent urination, and flushing. At 16 My numbers were within normal range still. My GP was happy with those numbers, but having a strong maternal history of Hashimotos, i requested a referral to an Endo. The endo sent me for a scan which was a radioiodine uptake scan and the result showed diffuse toxic thyroid. Along with my labs and my symptoms she diagnosed me with Graves. I didnt take antithyroid pills tsraight away and my T4 kept on climbing and i lost another 5 kilos without wanting to and I started on the meds. I had become unwell from being hyper and then crashing back to norml. As you can see the effects were systemic. Every organ system was involved, every cell. I am not a hormone expert but with your Gyno issues which are hormonal based and possibly hyperthyroid and a systemic manifistation to your neuropathy, I would be at least considering this direction in the absence of other systemic autoimmune illnesses. Hormones affect every cell in the body and can cause widespread symptoms that may or may not fully resolve even after the imbalance is corrected. There is no definite way to know for certain if my thyroid caused all my problems but mine is autoimmune therefore quite a possibility. I also have chronic cystitis and That burning you mention. Though i think it's my female hormones that have caused this.

To the last two posters, I really want to tell you how happy, grateful, and less alone in thus I feel. Thanks so very much.

You both provided great tips and things to try/think about. Whether or not I think it has any connection or not. After I finish this box of cereal, I'll switch to gluten free. That's about the only grains I ear aside from rice. The gut pain, burning and bloating( and gas!!) Is my bodies way of screaming at me for something I am consuming obviously. I am far too anxious and restless to meditate. I know that only means I really need it! I have taken a breathing/yoga/meditation class and therefore have some of the practice under my belt.
OK, so thyroid. Seriously, many of the symptoms you listed I can relate to but never thought of as being more than " who I am". Ravenous hunger and thirst are part of my daily life. I go to the washroom ( both 1 and 2) frequently. Although, I don't have flushing or heart palps (anymore). I'm steady at 125 pounds (5"6).
Yeast has frequently come up by both MD's ( visibly seeing it) and holistic practitioners. I don't have too many symptoms aside from craving sweets. But, I have hypoglycemia ( quite severely) and that is why my body demands them. I haven't taken antibiotics in probably 3 years, did 2 candida kits, probiotics, and eat plain unsweetened yogurt often . I would be surprised if it was the problem. It does keep coming up though, along with talk of parasites(yuck)

I had a nerve conduction study today . It was obvious to the technologist that I had carpel tunnel in both wrists,which explains the numbness in m hands ! I'll wait for my neuro to interpret the rest.
Maybe I should begun having a closer look at my hormonal problems and see if I can make any connections .

Again, thanks for caring enough to reply. The info is so valuable!
Feather

I agree with you Hopeful a good support system is so important. And a supportive partner is worth their weight in gold 10 times over. As for gluten, I nearly forgot to mention that I also have been gluten free for like 4.5 months. I had a course last week and I didn't mention to them that I had any special dietary requests. I was so hungry by 2 pm that I ate one of their big chocolate muffins. I spent the next 24 hours in a lot of pain and mostly gastro issues including massive cramping, bloating, and my intestines were contracting gain and again. I eat gluten free carbs and fibre therefore probably not responsible for my distress. What really surprised me is how bloated I got. I thought I looked pregnant, and I have a very flat tummy normally. Now I have a fear of muffins!!

I really recommend Kefir ... it has so many more strains of probiotics in it... Lifeway has 12!

Kefir can really turn a dysbiotic gut around. The Lifeway we have
around here.. tastes good, and is not expensive. I've been using it since Sept 2011. The bloating and gas respond to kefir very well.

I also use some simethicone daily to keep the gas moving along.
This is called GAS-X and is also in some antacid products too, combined with calcium carbonate. It doesn't take much to help, so large doses are not typically needed.

Thiamine or benfotiamine is really helpful for systemic Candida, as it helps the elimination of aldehyde byproducts the yeast tend to overload our systems with.

I bought some Kefir and gas X today.
Its a start. Sometimes we just have to control the symptoms until the answers are revealed.
I also got some wrist braces for the carpel tunnel ( don't remember if I mentioned that)
Thanks again.

Hi Featherbullet, I forgot to mention I do use Kefir in my daily smoothies. It is very good for the intestines and it does taste good. My favorite so far in vanilla. Also, about the meditating, it's great that you took a class. If you do decide eventually to try it let me know. I can recommend some. I use guided meditation. Their is a someone talking the whole time so it keeps you paying attention and if I lose tract the talking brings me back.

I hope things get better for you. I know how hard it is to have this disease.:hug:

Yes , please hopeful! I think I would do best with guided meditation because of my tendency to lose focus.

I used to eat/drink kefir when I worked at the health food store. I knew it had more beneficial bacterial than traditional yogurt, but didn't know that it could help with some symptoms I have. So far my tummy is handling it well. :-)

I'm just looking up benfotiamine. Sounds like a miracle. I'm going to order some.

Yes, benfotiamine works really well. I take 150mg a day.
I use Doctor's Best.

In the "old" days, (before Neurontin) Thiamine was a common treatment for PN in the elderly. And it works, by enhancing some metabolic actions to help heal. (Neurontin does not).

So it was dropped in US in favor of the Neurontin which was being pushed by drug reps.

Meanwhile, in Europe, Benfotiamine was being investigated in Germany for diabetic PN. This form stays in the body a bit longer than thiamine which seems to appear in the urine (its odor an easy marker to notice) within hours of taking. The very first benfotiamine therefore came from Germany. And we used to have a poster, on our previous board home before we moved to here, who used it. He used to post about it. Back in late 1990's. Sadly to say he passed away from cancer in the mid 2000's, but he used to email me etc. He said it cost alot of money and hassle to import, to even purchase. (Over $60 for just a month's supply).

Now it is very affordable. I get my Doctor's Best from Amazon at a huge discount.

Start at least at 300mg a day, but after a while once you are primed up and your enzymes saturated, I think 150mg a day is a maintenance possibility over time.

You sure know your stuff! I ordered Doctors Best as well, but from Iherb. I live in Canada, but with shipping it was $20. ( My painkillers cost $26 a week )
I will finish the bottle before I make any judgements.
I am on Lyrica. But once my samples run out I will be switched to Gabapentin because it is cheaper and covered by the trillium program here in Ontario.
I will be sure to update with my progress. :-)

Hi Featherbullet, the first one I would suggest would be Kelly Howell. She has a website which is her name .com. She has all different meditation CD's. Take a look at the site and see if any of them may be for you. Her voice is very soothing.
Hope it works! hopeful:)

I found some long ones on YouTube by her. Her voice does put you in a trance!
No need to buy anything. I like that.

So I was finally actually diagnosed today with peripheral neuropathy by my neurologist. She said she was surprised by the results of my nerve conduction study because I am young and my blood work is fine.
I'm now being sent to a different neurologist who specializes in peripheral nerves.
I'm anxious to try the benfo...hasn't arrived yet!!

Do you know what type of peripheral neuropathy? Thank you.

No idea. All we know is that blood work has not provided an answer.
Do you have any ideas or questions that may guide me in the right direction? Thanks !

DNA blood testing might be in order. However, it is very expensive. The testing might be able to help identify which type of peripheral neuropathy you have. There are many types. Just a thought.

Hmm. I wonder if that's covered here in Canada. Most testing is. Thanks for the info. I will keep plugging away and pestering my doctors for more testing, because who knows how much worse this will get without proper treatment.

If it's an inherited peripheral neuropathy there would be no cure/treatment. It would be nice for you to know exactly what it is you are dealing with. I hope you get an answer.

I have a nagging feeling that my past medications have something to do with it.
In particular -macrobid and clonazepam
If that's what is was, then I will stop the clonazepam and hope my nerves regenerate in time

Just a reminder:

You cannot stop Benzos quickly...they have to be tapered very slowly. Clonazepam has a very long half life in the body, so
consult the withdrawal sites for ideas about how slowly to
taper. It may take months to do so successfully, and expect
symptoms to escalate at times as well.

Klonopin comes in various dosage sizes than lend well to a slow taper.
A generic may not.

from http://www.rxlist.com/klonopin-drug.htm

Macrobid has a moderate to a significant risk for a person with CMT.

Wow, so I just finally had a few minutes to look up CMT..and it sounds exactly like me.
the neurologist JUST pointed out my high arches too. Do you think that unusually low creatinine can be a sign of muscle wasting ??
My arms and hands are very weak and painful. However, my whole body is affeted, remember. It started with the nerves of my bladder spasming and then burning down my thighs with pelvic pain. I just want an answer . :(

With CMT I do know that you can have high arches, normal arches, or be flat footed. Or you can have a high arch on one foot and be flat footed on the other, etc. It depends what muscles are affected.

There are so very, very many types of CMT that it would be hard to say. And so many other peripheral neuropathies out there. DNA blood testing, very expensive, might give you an answer.

I know that low creatine can cause muscle weakness. However, with CMT we have muscle weakness, atrophy, etc. already. So it seems creatine does not enter into the picture for CMT. IDK

Just a note to explain:

Creatine is not the same as Creatinine.

Creatinine is the by product muscle metabolism.

http://www.nlm.nih.gov/medlineplus/e...cle/003475.htm

When creatinine is elevated...that is a problem. Mostly indicating kidney functions are not normal, and it is building up in the blood.

Have low creatinine therefore in testing is good.

Creatine can be taken as a supplement. Bodybuilders use it heavily, to build bigger muscles.

Thanks for the explanation. Interesting site. I should have caught that. Body builders can and do use Creatine. Interesting site:

http://www.menshealth.com/nutrition/...t-what-it-does

However, it will not build any muscle that is affected by CMT. Those muscles are atrophied (dead). Healthy muscles yes.

Thanks Mrs D. I definitely know that info... having worked in nutrition. I know that high creatinine is problematic, but abnormally low must also signify something. Why are mine working so hard? I have hardly any muscle-and they are quite weak and always always sore whether I have exerted them or not. I was just curious if there were any obvious ties to neuropathy. Obviously if none of my doctors have said anything yet, then there isn't.

I'm also well aware of the issues with clonazepam withdrawal. I only take .25-.5mg every other day. I used to take .25 daily. And tapered off of it with no problems. Now its only used ifI am too anxious to sleep , or something has triggered a panic attack.
I am still curious though if its long term use has contributed to my nerve damage. I guess I'll never know for sure.

Thanks guys.
I'll mention CMT to my doc. I wonder if DNA testing is covered by OHIP. I'll ask.
You have all been such a great help. And very speedy with responses. I hope to give back to the community some day once my situation is under control and I have advice to give. :hug:

http://www.ehow.com/about_5109748_ca...e-levels_.html

Thought so. Muscle wasting....

I wanted to add that I have overcome the bloating and pressure by eating gluten and dairy free . Oh , also eggs. It could be coincidence. My energy levels are pretty good.

Has anyone heard of Kratom for pain by chance ??