I thought I'd tip-toe in and post an introduction.
Up until 5 years ago, I was a busy, healthy mom of 4, expecting her fifth child. I was then diagnosed with a mediastinal non-hodgkins lymphoma during pregnancy. I underwent 6 rounds of chemo, delivered the baby, had radiation and made the attempt to move on with my life. I thought the worst was behind me and that any neuropathy in my legs that I had from the vincristine in the chemotherapy would ultimately improve. Vincristine associated neuropathy usually improves and often completely resolves in the first year after treatment.
Instead, my neuropathy continued to progress.
What started in the feet and calves as cramping and burning continued to intensify. A year later, I started experiencing coldness in my left index finger. It can get cold as an ice cube out of the blue. I didn't associate it with neuropathy until I started experiencing burning/tingling in my hands (glove distribution).
I still wasn't terribly concerned ... and I was busy with 5 children.
1 year ago, I suffered attacks of what was later diagnosed as trigeminal neuralgia. I had never heard of this and was completely shocked. I have a bilateral case (side switching but never at the same time) and diagnosis and tx occurred after I was admitted one night to a neuro floor. It was horrible.
Still, I figured that I had *bad luck* and that treatment with tegretol would work for it (it does for the most part when I am consistent). At this point, I began experiencing burning sensations, electric shock sensations on my tongue. I'm not kidding. I thought I was going crazy. I also began experiencing intense bitter taste and lost the ability to taste certain things, like cherry in diet cherry coke. It's totally and completely without a doubt the weirdest thing I have ever experienced and I feel like a freak for talking about it. I just *know* people think I'm nuts! This problem is not resolved by the tegretol and is only helped by using the Mayo mixture and at times a lidocaine gel on my tongue. I saw ENT and they indicated that the mucosa on my tongue showed evidence of change/damage and that it was consistent with peripheral neuropathy.
Then ... came the ears ... bilateral eustachian tube dysfunction that either is or is not related ... no one can decide ... but it is coincidental that it happens at times of increased tongue/facial symptoms. Still, I'm willing to think that it is unrelated.
Now the burning in my feet/calves has progressed up my legs and arms.... and ...well ... ummm ... into my ... groin region.
My EMG only showed large fiber involvement in my calves (which could be consistent with damage from the vincristine)...all of my bloodwork was normal with the exception of low B12 which was not too low, but has been corrected with monthly injections.
I'm 40 and I feel 70. I used to be vibrant, outgoing and busy with my kids and now I ache, have burning limbs, feel tired and I ... frankly ... I feel like I'm going nuts. I feel like every doctor I see thinks I'm nuts. I feel so upset that no one has a good explanation for all of this.
I saw a new neurologist this morning who is going to do a repeat EMG since my symptoms are worse and it has been a year ... and who will be doing punch biopsies. He says he has "never heard" of anyone have any combination of symptoms like this.
I just feel so embarrassed and frustrated. I want it all to go away. I have tried anti-depressants, therapy ... and am now on neurontin and tegretol. The neurontin is good for the neuropathy if I am regular about it, but I find that it affects my ability to concentrate ... and I am busy with my children. I really can't afford to not be at my best for them.
I guess ... what I need is to either hear a few people say "I've been where you are, don't feel like a complete loser" or to just be sympathetic. There is really no one in my life that I can talk with about this. My husband just worries and we don't really have a good support network as far as family goes.
Thanks for hearing me out!
Kris