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The docs wanted to put my husband on Neuronton when PN pains made it almost impossible for him to walk. He has problems with almost all meds and when he learned the side effects, we did not even get the RX filled! He had already been taking the supplements mentioned here, but the therapeutic block which was supposed to help had made the PN worse. I found out about Neprinol from the QXCI forum. An MD recommended it. He did not sell it, but found it more effective than other forms of Nattokinase. It has other enzymes in it, too. It took several months, maybe because he had to take a reduced amount, but it got rid of all the PN pain.

how????? i am being prepared for a lifetime of pain

I've been a part of this group for the last four years. I came here unable to walk. Now I'm walking, back to work, even taking a Yoga class three times a week! I've lost 40 pounds and plan to lose 60 more.

I have my days, and my weeks. I know that if I don't keep stress in check, it will check me and put me in pain for a week or so. I've figured out I have about a 3 day delay in my cycles. If I "splurge", and push myself, it will hit me within 3 days.

My doctors did pretty much "nothing" for me except tell me I have Small Fiber Idiopathic Peripheral Neuropathy. Ran lots of tests on me and sent me home with lots of medications that made me unable to function at work. I lost my job and was even more depressed! This group taught me what I needed to get back on my feet. (Even after I fell a few times and tore my rotator cuff and couldn't use my right arm for 3 months!)

I followed Bob's diet advice.. (Wings 42) and I take Vitamin B supplements. I eat Spinach and Salmon three times a week. I hardly ever eat red meat... I put Flax seeds into my morning smoothies and have learned to say no to a lot of things I used to love. By taking control of my own life.... I've taken control of my disease! (I'm still sad that I can't wear a pair of red high heels!) At least I can walk now... and I couldn't say that 3 years ago!

The people on this board have not only helped me pull myself up with my Neuropathy, but also from the Depression that comes with being diagnosed with a disease!

Thank you all! And for you Newbies... there is hope.. don't give up! YOU have to be your own advocate!

Steve, sent you a PM. What is the TOS Forum?

Jay

I was reading this and I am a first time user on this site, and reading what you wrote really gives me hope, I have suffered several years, and no one could find anything to help me. and I have heard of coq10. I was curious about trying it and if it would really work. Now I will see about trying it since it has worked for you. Thanks

We should always be careful not to expect miracle cures for anything. Unless we are doctors (with paid up malpractice premiums! lol) we should also be careful of what we are telling folks. Lizajane, as I assume you are not a professional doctor, could it be that the doctor was right after all? It seems to me that there always is that possiblity, as well as the possiblity that he was wrong. If something seems like a particular Dx, doesn't always mean it is.

Hope is a good thing, unreasonable hope is a dangerous thing.

Jay

Thanks so much! I went to the Neurosurgeon God today and left with my usual disgust and order for a new MRI.

Once again, God Bless You all for sharing. At least I know I am not completely crazy yet.

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jsrail: I've just read your note suggesting that maybe the doctor who said I never had neuropathy was correct. I understand the fear that hope can become a belief in miracles, but really, I'm not a miracle.

I have a real sensorimotor neuropathy, with autonomic involvement. Over the past 10 years or so there were periods of great sickness and symptoms, and periods that were better. But the trajectory, putting it all together, was slow and steady improvement.

I always felt best when I was on antibiotics for my chronic sinus infections, and many of us here noted some sort of correlation between infections and neuropathy. When my sinuses were infected, my neuropathy was worse; when I was on antibiotics, I felt more well on all parameters, including neuro.

My EMG/NCS are not as good as the test results I described in the post you responded to, but still, I am much much better.

In the end, my diagnosis is still confusing, but now there is even more hope.
I have tested positive for lyme, and markers of chronic lyme are all positive.
I have been on antibiotics since February, and I can now count 3 full weeks of wellness, including improved neuro function. I have signs of autoimmune illness, but the general thinking is that there was a trigger for the autoimmunity, and it was probably the lyme bacteria.

I can expect at least 12 months of treatment, and I'm finding it easy to tolerate while seeing a doctor who is very experienced in caring for complicated patients as well as chronic lyme.

I have no idea how many of us with "idiopathic" neuropathy have lyme, but anyone who has neuropathy should be tested for it.

I did improve, and hope it continues.

Best to all..