The time rolled around again for my yearly physical. My primary physician had changed. When I proceeded to explain my symptoms, which at this point had now affected my entire left foot and my right foot was beginning to show symptoms, he was all ears. He sent me to a neurologist who did nerve testing and blood work. He said I had PN and that my calcium was extremely low. I was then sent to an Endocrinologist who did further testing. It was then suggested that I see a specialist at Massachusetts General Hospital. I did, and was told I needed to have my parathyroids out. All 3 doctors at this point thought that the PN might be related to the extreme low calcium. Well, in 1998 I went to Massachusetts General and had surgery. We all have four parathyroids, but the surgeon could only find two. One was as big as a grape and the other was suspect, so he removed those two. The lab results came back that the grape one was malignant. I didn't need any sort of treatments after, because this type of cancer is self-contained. I felt great in the hospital during my recoup period - guess why? I was given morphine for pain - no cramping, tingling or burning in feet. You guessed it! I thought my problem was solved. Came home and did find that I was feeling much better mentally and a different overall physical feeling. But, the pain in my feet was still there - by this time it was really traveling to my right foot.
Well, back to the drawing board. My primary physician sent me to a neurologist specialist at Mass General. I have been under his care since the beginning of 1999. He has done every imaginable test there is. I have been poked, probed, jabbed, nuked numerous times, drunk all sorts of concoctions, MRI's, more CAT scans. He put me on Neurontin and I had reactions to it which included mental fuzziness and I started choking more times than one. Because of the choking he took me off of it. He started me on Tegretol, but that had bad results. I'm now on Celexa and Ambien so that I can sleep at night. It was a trade off for me - Neurontin helped somewhat but I was afraid that I would be alone one day, eat something, and my family would come home and find me dead! Does this sound a little too dramatic? Well, I was with a friend once and I took a spoonful of soup and she bruised my ribs making sure that I didn't choke to death. This happened on numerous occasions - too many to list.
We're up to July of this year. The doctor at Mass General did another blood test on my Vitamin B12. It had suddenly dropped from what it was previously in 1998. You know all the paper work involved with doctors? I didn't hear about this until two weeks ago when all of a sudden my doctor and I got a copy of his report that mentioned the low Vitamin. I just had my second Vitamin B12 injection. I'm doing this for two weeks and then meet with my doctor to see if I feel any better. Will it really be all this simple? I've gone nuts thinking the worse - waiting for reports. One blood test came back with an alleviated HU antibody and the neurologist told me to go home and take care of the "cancer". He also said that I should have it tested again in six weeks which I did. The HU antibody level after six weeks came back okay. Do you know what this antibody indicates? Small cell lung cancer! So, I live in fear when I have another test in 6 months that it was there all along - sometimes testing will show it before any symptoms appear - of course, PN is one of the symptoms. Oh, well..............
I'm at my rope's end. As of this moment, I can only walk around the house when I have things I can lean on or hold. If I go shopping with my husband or children, I have to use a wheelchair that the store/mall has. I hate those things. So, the doctor has recommended that I get a QUICKIE lightweight wheelchair. It's modern looking and I ordered one completely black so that I'll only draw attention to myself and not the chair! It's now on order and we are in the process of fighting with our insurance company over who's going to pay for it - after all, what is peripheral neuropathy!! Can't actually see it like a broken bone - can only explain the pain!!!!!
I have 5 grandchildren: 4 girls ages 10, 5, 9 month old twins and a 3 month old grandson. I have always had energy and was always on the go. I play the piano but have become limited because it's now in my left hand and beginning in my right. I can't write longhand, but can make do slowly with this keyboard. (I sure hope those injections help). So, I'm teaching my 5 year old granddaughter to play. I can't work in the garden or cook like I used to. I have to rely on my family and friends. So, pride has been one of my biggest obstacles. I try so hard to keep my sense of humor.
The pain is there and I can't do anything about it. When night comes and I know I'll be able to take that Ambien and sleep I find I can go a little longer with the pain. But, then I know that I'll wake up the next morning and it will just start all over again.
Thank you for letting me air this all out. It feels good. I've searched the Internet for months trying to find something/someone to give me hope. Telling you "like it is" helps a lot. So, I'll end here - after all, it's time for that Ambien.
Goodnight, all...
~Katica (Kathy)--o-katica@usa.net