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Old 03-06-2015, 03:09 AM   #1
Nash
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Confused Desperately looking for help

Hi,
Nash here. Desperately looking for help related to suspected small fiber neuropathy. Below is the history.
1. Started off with gut infection and then recurring UTI in Aug 2013 (was on cipro, nitrofurantoin) post bad emotional trauma.
2. In October 2013, pelvic pain and bladder dysfunction with pain in right feet
3. After 20 day course of Cipro and Tinidazole for suspected prostatitis, in December 2013 I started having gastro issues with severe constipation with oversensitive, pins and needles left big toe started.
4. In Dec 2013 was on chlordiazepoxide and clidinium bromide for sleep and depression issue post gut issues.
5. For pain in leg and pelvic area, I was put on Gabapentin 300 mg once daily for a month in January 2014. EMG and MRI done in March 2013 came out normal except for suspected absence of Sympathetic Skin Response (small fiber) and L4-l5 moderate disc bulge. 24 Antibody autoimmmune came normal.
6. In Feb 2014, I was put on amitriptyline Hcl 10mg by Neurologist for nerve root irritation. In March 2014, I was put on Steroids 8 mg (twice daily) for a month and paroxetine HCL 12.5 mg (1/2 daily) stopped after few days as paresthesia worsened and was put on klonopin and escitalopram (1/2 daily) for pain and paresthesias with Levosulpiride twice daily for gut issue.
7. Clonazepam and escitalopram and Levosulpiride was stopped suddenly due to horrible gastro issue in May 2014 end. I was throwing out everything that I ate.
8. Then in June 2014, I was put on multiple antipsychotic drugs (like Clonazepam, escitalopram, Tianeptine 37.5 mg, Pregab 75mg etc.) for two months. Also was on antibiotics (ofloxacin, cefixime) for rectal infection due to fissure.
9. In August 2014 due to sharp burning like trigeminal neuralgia developed in face and Dr's advised to stop all medicines and was put on Amitriptyline Hcl 10mg again. Was also on bovine colostrum for fatigueness and history of recurring sore throats. Was on multiple supplements like Vit b12, carnitine, Alpha-lipoic acid and biotin etc for almost two months.
10. For horrible paresthesias (buzzing, vibration) that developed in palms and feet, I was put on Clonazepam 1/2 daily for 10 days. In September 2014, hypersensitivity developed in shin area with burning in shins whenever water touches that area. I was put on Duloxetine 20 mg twice a day. Vit b12 (methylcobalamine) 1.5 mg daily.
11. In October 2014, buzzing in upper back near left shoulder blade and then pain developed in that area on bending forward. Then odd rough dry sensation with mild burning with burning in finger tips developed in palms. Then burning progressed in soles and shin with worsening of odd paresthesias. Was on Steroids 8 mg twice daily again for 1 month for paresthesias.
12. Current symptoms:
• Odd rough dry, mild burning sensation in palms with burning in finger tips while typing
• Horrible burning in shin,feet, sole areas with tingling and buzzing in sole areas. Severe hot water like paresthesias near shin area more in right leg. Alternate hot and cold feeling in shin, feet, palm area. Pins and needles in finger tip and toes. Reduced after taking duloxetine 20 mg.
• Buzzing in upper back near left shoulder blade and horrible pain in same area on bending forward
• Hypersensitivity in shin (mild burning on when trousers touches that area). Hypersensitivity in face, forearms and legs in thigh (with burning pain in thighs on sitting), skin in entire body easily bruises, turns red on even mild mechanical stress.
• Horrible paresthesias (buzzing, tight water like in shin) in legs worst on sitting or bending knees. More on right leg. Pain in knees and elbows on little use.
• Fatigued with mild physical work. Recurring sore throats.
• Severe constipation since Dec 2013. Bladder dysfunction and pain in pelvic area while sitting.
• Hypersensitivity to food and other drugs.
Currently on homeopathy medicine for burning, Duloxetine 20 mg once daily and Pregab 75mg + nortriptyline hydrochloride 10 mg once daily.
Based on above symptoms and some research that I have please let me know whether it is;
1. small fiber sensory/autonomic neuropathy (could be post infection pudendal neuropathy), or
2. severe benzo/SSRI sudden withdrawal symptoms or
3. Fibromyaglia type II (neuropathy type driven by overactive sympathetic nervous system with involvement of limbic system) or
4. Cipro neurotoxicity or
5. ???

Neurologists are clueless about the condition and skin biopsy for SFN is scheduled after 2 months. No test available for Autonomic nerve fiber dysfunction. Other immune test and pathological test scheduled after few weeks. Recent EMG came out completely normal with presence of sympathetic skin response.
Kindly let me know if more info is required.
(Disclaimer: medicines mentioned in this post are not intended to substitute any medical advice. Kindly consult your doctor and take medicines only under registered medical practitioner’s supervision only)
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Old 03-06-2015, 08:19 AM   #2
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Welcome to NeuroTalk:

Thank you for the detailed list and history. You have been on several drugs that damage nerves.

Nitrofurantoin, Cipro, ofloxacin, and Tindazole.

The GI gut flora, must also be damaged and this leads to all sorts of additional problems.

So you should investigate a good probiotic, available where you live. Kefir is a good start. It usually has more beneficial bacteria than traditional yogurt. You may have to find a more expensive probiotic online.

When beneficial GI organisms die from antibiotics, then digestion gets all messed up. Bad bacteria cause gas, bloating and diarrhea. Avoiding sugar and fructose may help with healing if this is your problem.You might have to go gluten free too, to reduce inflammation in the intestines.

We have a neuropathy forum here:
http://neurotalk.psychcentral.com/forum20.html

Continue with the methylcobalamin and make sure it is on an empty stomach for best absorption.

I'd make sure you take a good therapeutic multivitamin too. One with good amounts of Vit A. A damaged GI lining leads to poor absorption of vitamins and other nutrients. Dry skin can be a sign of Vit A deficiency. Do not exceed 8000IU of retinol, however which is the original form for A....betacarotene has less potential for toxicity.

If you are vegetarian you could also be low in zinc and some amino acids like methionine.

Looks like you have been on lots of medications, and these only try to control symptoms and do not allow healing or fix any nutrient needs at all. Your diet and replacing some lost nutrients may be much better for you in the long run.
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Old 03-06-2015, 02:16 PM   #3
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Welcome Nash.
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Old 03-06-2015, 03:39 PM   #4
Nash
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Thanks mrsD for your reply. I had tried Yakult for few weeks but I had to stop it as I developed side effects with other drugs. Would try it again and also try excluding gluten from the diet.

Really appreciate what all the moderators are doing to help!
Hope to find some clues on nerve regeneration in case of toxic neuropathies similar to the latest breakthrough research study done at Northwestern University on nerve regeneration in case of painful diabetic neuropathy using Hepatocyte growth factors.
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Old 03-06-2015, 03:44 PM   #5
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http://www.newsmax.com/Health/Health.../05/id/628524/
New Gene Therapy Eases Diabetes-Related Pain
Thursday, 05 Mar 2015 04:12 PM

http://onlinelibrary.wiley.com/doi/1...3.186/abstract
Double-blind, placebo-controlled study of HGF gene therapy in diabetic neuropathy
Annals of Clinical and Translational Neurology
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Old 03-06-2015, 03:47 PM   #6
Nash
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Thanks Lara for posting the link as I was unable to do so due to certain restrictions.
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Old 03-06-2015, 06:50 PM   #7
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Hi Nash,
You mention at the start of your Post about a 'bad emotional trauma'. Then you have all this dumped on you.
This may sound like a stupid question, but 'How are you, mentally?' Have you managed to address this initial emotional trauma? Do you have the support you need at home/medically?
Far too many of us who suffer severe chronic pain also have Depression issues which make everything worse. If this is the case, know there is the beginnings of a Support structure here.

Dave.
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Old 03-07-2015, 03:01 AM   #8
Nash
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Hi Dave,
Thanks. Well, I really do not know whether emotional trauma was the trigger or neurotoxic drugs. Neurologist are saying Cipro side effects are unlikely as it has taken several months for the side effects to show up and they tend to show some improvement over some time. They are blaming brain (amygdala, insula and hypothalamus) for almost global progressive symptoms.

Also, there is increasing no. of study now suspecting that certain 'personality traits' driven by history of horrible anxiety, fear, stress and depression which affects the command and control system of the autonomic nervous system in the brain and make ppl vulnerable to neurological disorders. So focus is on avoiding stressors and on positive aspects of life and remain optimist about advances in regenerative medicine to help one day cure and just not treat this painful disease. Would continue to update in forum as soon as I come to know about in case of any promising path-breaking research on regenerating nerves.

Regards,
Nash
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Old 03-07-2015, 03:11 AM   #9
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Hi Nash, I just wanted to mention that someone has started a post regarding the VM202 in Peripheral Neuropathy forum if you're interested

http://neurotalk.psychcentral.com/thread217053.html
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Old 03-07-2015, 05:41 AM   #10
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Doctors rarely if ever will admit to drugs damaging patients.

And you have had 4 that are in the literature as neurotoxic.
The others in your history are not helping you much and have
Major side effects. That yogurt you use is not good enough--
It has only one strain in it.

New research is showing that the many types of GI organisms
we have are what keep us healthy.

It is time for you to find another doctor!
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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