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Originally Posted by lined_in_silver
Susanne- thanks for sharing your story. It sound familiar. Its not often I hear of other pn'ers with burning in the thighs like me. Or muscle weakness, severe bi lateral carpel tunnel, etc. I'm leaning towards cmt lately. As a child I got frostbite super duper fast, and in my teens had a numb patch on my upper back and weird sensations in my thighs when I'd exercise-itchy and tingly.
Mrs d-yes, I have taken cipro a couple of times for bad uti's. Also been on macro bid about a dozen.
These familiar supplements sound worth an honest try. I took a bottle of L Carnitine and stopped because of the expense. How is toxin induced pn diagnosed?
Also, since my nerve conduction study showed abnormalities, does this mean it is large fibre? That's how they diagnosed carpel tunnel. I also have no ankle reflex and high arches.
I could be one of the lucky ones with large, small, and autonomic involvement. It sure feels that way. There's no symptom I don't have. Although the only numbness I have is in my hands in the morning if I don't wear my braces.
I'd hate to think that doctors are disregarding my complaints because of my age.
I'll keep watching the forums and try to use the info at my big appointment with the best neuro in Ottawa in December.
I'm wondering what the best way to get the point across to my pain doctor is that the pain is unbearable and really can be everywhere. He tells me to do Tai chi and reluctantly puts me on a low dose painkiller.
I found a great support group on Facebook, if anyone is interested. Its called " support for neuropathy "
Peace and kindness
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Do a little Internet research on talking to doctors about pain. I got badly burned on here trying to patiently explain to someone that they needed not to come off as a drug seeking maniac, which was how they came across on the forum, so I will not give advice personally, but doctors basically need to be convinced that your quality of life is affected. If you can take a family member to back this point of view up, that is better. Doctors are in a tough spot, they are not supposed to allow pain to be undertreated as it leads to more pain and debility,sometimes even heart failure or suicide, on the other hand they are strongly discouraged from prescribing effective medications. It is a delicate balance and we have to be very careful, making it difficult to have a meaningful doctor patient relationship.
I also used cipro and Tricor ( for high trycgycerides) and noticed a worsening of symptoms after each. The cipro was for a foot infection which had progressed to an emergency before I even noticed it. My balance did improve somewhat when I got off the Tricor.
I have had very high arches and absent reflexes since childhood. My eldest son, who also has CMT, has these symptoms as well. He has weak ankles and walks on the insides of his feet. I tend to walk on the outsides. You have enough symptoms to suspect CMT and an abnormal EMG is one of the tests for large fiber neuropathy. As the large fibers weaken the muscles die back which is where the progression comes in. My arms and legs are much weaker and I am unable to move my toes or the front of my feet at all. Trying results in muscle spasms.
If they determine that it is CMT it gives you some closure, but rules out pursuing treatment, so presents a dilemma. Good luck with your appointment, you are doing the right thing by learning all that you can first. I hope you have a compassionate and open minded doctor who knows how to listen.