Axonal peripheral neuropathy: Finally, a diagnosis!

Truthfully, I am frustrated. I cried all day the other day.
When I was a child I took IVIG therapy until age 18. My neurologist passed away Sept 2022 and almost had IVIg therapy approved. Then the doctors in the practice said sorry you do not qualify. A doctor I trusted that I had seen since 2002-2022 to a new doctor. We believe it’s autoimmune but I haven’t tested positive for anything. Elevated CRP and sed rate sometimes elevated Ana but not all three together. My grandmother, mother and my cousin was born with juvenile rheumatoid arthritis. Been trying to get a referral done to University of Boston. Dr Anna Oaklander a research neurologist that’s hard to see. My neurologist would not fax clinical notes. I went and picked them up and faxed them myself. They have put a bunch of incorrect information into my medical records and they refuse to remove it. The brain mri shows I have never had a stroke but I get severe migraines that slurs my speech and the mri shows the migraines affecting my speach. Happened to get a migraine during the mri. I had bacterial spinal meningitis in 2002 that’s when I started having severe migraines. I also believe that’s when the neuropathy truly started. I had IV antibiotics and Picc line (line put in upper arm to administer IV drugs) for four months ( had to go in 24/7 if they did them three times a day I constantly threw up) then oral antibiotics for another two months. We do not know what has caused my neuropathy everyone has a cause. I am going to her for genetic testing and since it’s a research facility my adult kids 38/28 will be tested genetically to see if they have it. Currently after watching me struggle they do not want kids.
This has affected my family in so many ways. I always wanted grandkids but at the same time I can understand how they feel. They do not want to hand it down genetically. I am not diabetic and my hypothyroidism was diagnosed three years after the neuropathy. For pain the only thing I am not allergic to is OxyContin 20 mgs TID (three x a day) Oxycodone 15 mgs up to six a day. I have a rare sulfa, sulfite and sulfonamide drug allergy. My aunt has the same allergy. There’s only two antibiotics I can take. This is getting where it no longer works my medication been on the same dose over 10 years. Four left hip replacements and a actebulum fracture takes its toll. Then a right hip replacement. There is only one type oxycodone I can take kvk-tech and that I am not allergic to. My insurance will not cover it because the pharmacy is out of network that carries it. I have over 50 different drug allergies. I hallucinate on hydrocodone , morphine sulfate quit breathing turned purple and I can’t take fentanyl. The others gabapentin has a sulfa component and so does Lyrica. Currently, I have been diagnosed with foot atrophy ( loss of muscle) feels like I am walking on rocks. It makes walking hard. I have a friend that has neuropathy and when her feet started to atrophy the bones fell out of her feet no muscle to hold them in place. Then she ended up with an infection and had to have both feet amputated. It scares me watching her. It’s very painful. Texas is a non medical marijuana state. When we come back from Germany we are hoping to be in Colorado. I think I would like to get off the pain meds and go to medical marijuana since I am asthmatic it would have to be homemade edibles most people do not realize that some edibles have butane in them. Alcohol has sulfates in it so I can’t drink otherwise it triggers my asthma. When my pain gets bad enough and lack of sleep I start having seizures. When it gets to that point I have to take a lyrica (change the capsule to vegan and put it in a different capsule with two Benadryl take more than once my mouth blisters up and my face swells). I don’t have spinal stenosis but I do have lower back spinal bifida and ehlners danlos double jointed problems in my back.
They did the EMG/nerve conduction on my arms they say I don’t have neuropathy there but when cooking I can cut either hand and not feel it and look down and them to be bleeding. Plus I get severe nerve pain up and down my arm. My fingers get locked up and disfigured. The pain starts in my forearm. Not in the wrist. I ended up with stitches three times in one month. The doctor tried to accuse me of being suicidal until he sewed me up with no lidocaine. Did not feel it. I told him why numb something I can’t feel?They have done an mri on my neck no pinched or compressed nerves. My C6-7 fusion was caused my a seizure and injuring myself when I feel in the elevator also had to have a biceps tendon reattachment. The seizure was due to stress and lack of sleep along with the pain in my feet. This really takes a toll on a person. It affects you mentally and physically. I love to cook but now can’t stand up long enough. I loved canning fresh vegetables along with making homemade jellies and can’t do those things. I have learned to pace myself. For example I start Thanksgiving several days early and just heat up the day of. I leave my pies to the night before but dressing and turkey is already done. I have to cook cornbread and biscuits a couple days a head of time now. Do my grocery shopping two weeks early. That way I have time to rest in between. I use a scooter in malls and grocery stores. Airports I use the wheelchairs in the airport. I have had to learn to give in that I can no longer do it myself. My husband helps getting me undressed with pants and TED hose (compression hose) my legs turn purple and swell. The really bad thing spent over 5,000 dollars redoing my wardrobe and no one explained about swelling and neuropathy so none of the clothes fit. I went in two days from 160 size 12 to weighing 210.
So needless to say that was very frustrating to go from a size 1.5 to a size 3. I am holding on to them hopefully some point maybe the swelling will not be so bad. Already on diuretics because of the medications to stop the bradycardia and tachycardia of the cardiac autonomic neuropathy, gastroparesis ( can go days without eating because your not hungry), bladder problems. Just an fyi when it gets to that point go to the restroom every hour whether you have to or not. It keeps you from having accidents in public. Things I have had to learn on my own. I have learned to start carrying snacks where glucose does not drop too low. I normally carry granola and things in my purse. When I travel back and forth to Germany I carry no salted nuts and apples with me where I have something to snack on. I carry my own herbal tea and a Starbucks mug for hot water.

I also use a pain cream that has ketamine, gabapentim, long lasting type lidocaine, Baclofen it has a bunch of stuff in it. When I pick up my new prescription from the pharmacy there’s people on the website that want the information. I sleep with socks on but I can’t stand covers to touch them. The socks are loose and thick. My hands and feet get really cold and the rest swsweats at night.

Good evening @ray666. You have done some letting go @ray666. And as I read between the lines, it appears that you are still making adjustments to the substitutions.

I thought about that for a while and don't think I am quite there yet. I let go of my "trekking". From the daily practicing up on my mountain to the weeks we spent trekking around the states, and other countries, there is still some sadness and even loneliness. My commitment to becoming a Mayo mentor has filled a number of hours every day and introduced me to wonderful folks from around the world. I have also learned a great deal more about my SFN by spending time with 2 MFR sessions a week.

However @ray666, I seem to be having more trouble with letting go of activities that require acuity of mind. For me, mild cognitive decline is a downhill trip. If you are experiencing some aging mental issues, are you impacted by the length of time it takes you to refresh your memory, re-read technical material, and remember what you learned yesterday?

May you be free of suffering and the causes of suffering.
Chris

Good morning, Chris (@artscaping)

You read well between the lines! You're right: I'm still adjusting. Voice recording is a fair substitute for acting, but it sure ain't the same. What I miss most are the PEOPLE! Theater is a community activity. Voice recording is a solo activity. I feel that acutely. That surprises me, too; I've always been a loner. Although I have a partner, we maintain two houses, two miles apart. Although she and I are together evenings, in many ways, effectively, I'm still living alone. That never bothered me much. If I were in rehearsals for a show, mornings I'd be up and out of the house bright and early for another day's rehearsing. If we were in performance, I'd have my days for domestic things; then evenings, I'd be at the theater. In both instances, I'd be with PEOPLE! That's changed now. PN took away the acting and, with it, the PEOPLE. I do what I can to keep myself "peopled": I've got a writers' group, and nowadays, because our weekly get-togethers have enhanced value, I take extra good care of my role in the group. The same goes for friends: I'm extra careful not to let too much time go by between get-togethers or, if necessary, phone calls. In other words, now that I'm not acting, I do all I can to keep myself "peopled."

If we're lucky enough to survive into our "upper years" ("upper" is different for each of us), we find ourselves having things "taken away" from us. Alcohol was taken away from me when I was barely into my 50s (and good riddance!). Running was taken away from me when I had a total knee replacement in my mid-60s. And now, thanks to PN, acting has been taken away from me. Taken away, taken away, taken away! Just listen to me. If I didn't know myself better, I'd think I was complaining. 😀 I'm not! Things get taken away. Other things come along to replace them. Life is cyclical in that way. Good times come, followed by bad times, followed by good times again. A handful of words from Leonard Cohen's "So long, Marianne" has always stood me in good stead: "… it's time that we began/To laugh and cry and cry and laugh about it all again."

Will something else soon be taken away from me? Don't make me laugh! 😀

May you, too, Chris, be free of suffering and all its causes.

Cheers!
Ray (@ray666)

The best thing I have found is Keep Moving. I try and take a good walk in good tennis shoes almost every day.