HNPP, My story: Mr. G, Wales, UK
Im 38 years old, I was diagnosed with HNPP in may 2012.
It all started in summer 2011 when i was weight training 5xdays per week, both my arms had turned numb from fingertips to elbows, but I didn’t worry I just assumed a trapped nerve from lifting heavy weights.
A few weeks later the dumbell started slipping out of my left hand, it didn’t worry me but I knew something was wrong, especially when I couldn’t turn on the shower at home or the taps.
Then i went to a cash point and I couldn`t pull the card out so my wife made me go to A and E. They took an xray then immediately sent me to Walton Hospital Liverpool telling me they were better equipped to deal with this type of thing as they put it!.
I went to Walton Hospital, Liverpool in November 2011 where I had nerve conduction studies and an EMG, the doctor then told me something was going on as I had trapped nerves in both arms and legs , by this point I had lost all my motor skills in my left hand. She told me she thought she knew what was wrong but didn`t want to scare me, that really helped lol! She also told me my legs were affected to which I told her they were fine, to be told , sorry but they wont be.
A letter came saying after reviewing my nerve conduction studies I would best be dealt with by a neurologist who then preceded to send me for the genetic bloodtest for HNPP, it came back positive, I received the letter confirming it on 22 may 2012.
In a way it was bittersweet, at least I knew what was wrong with me and it could have been worse but was still gutted that I had a disease even my own GP had never heard of.
Next step genetics, who explained it all clearly how my children could inherit it, and made all the referrals I would need which included a neurological physiotherapist ,an orthotist, someone who specialises in the use of devices to help support weakened joints.
My eldest has tested negative, she’s 16, my younger two remain untested, my girl, 12 and my boy 7 years old.
By now my legs had started hurting and my feet had developed a burning /stabbing pain which had become unbearable, I remember in Drayton Mannor park with the family having to sit regularly and just watch as my feet were in agon, remembering back to when the doctor told me I would have problems in my legs.
I visited my GP who prescribed me gabapentin (neurontin) which did not work, he then tried a combination of lyrica and tramadol which did the trick.
By now I had joined the facebook group HNPP HELP ,which has been a godsend and met some amazing people on there.
My left hand had started recovering and I foolishly bought a multigym only to find 4 weeks later my hand was useless again, it has never recovered since and I am very limited what I can use it for, if you keep damaging the nerves they will eventually be permanently damaged.
The disease has been quite progressive for me turning me from an active person to virtually someone scared to exercise because of the damage already caused.
I cannot walk far being a combination of leg pain and weakness, my legs tremble and so do my arms if I lean on them, I have a very noticeable tremor and on my left hand my little finger and ring finger will not extend, they are curled in.
Pain, ah, the baine of my life, I experience it all over from muscles that ache to nerves that cause sharp shooting, burning pains, I get fasciculations all over my hand which are also a sign of serious nerve damage, maybe axonal my GP said.
Cramps are a nightmare too, oh it`s lovely this disease doesn’t like to leave you without nothing.
The pain meds I now use are pregabalin (lyrica), tramadol and oramorph for breakthrough pain if it gets really bad. I use clonazepam which helps with the painful cramps/spasms.
Physio gave me crutches, which you really should not use but I have been left with little choice and a wheelchair if I need it, at times my wife thinks it would be easier if I did use it but at 38 years old I will hold off as long as I can.
My hobbies now include gardening, wildlife and I have 3 dogs so plenty to do lol!.
I have a beautiful wife who I love dearly and 3 gorgeous children, I often wonder if I’m a burden to my wife and even if the shoe was on the other foot i would never consider her a burden but still, I can’t help the way I feel. Some days I love life, other days not so much but the good times outweigh the bad.
I hope people reading this will understand how variable HNPP can be, some are affected mildly, others a bit more, and even then you have good days and bad days, I’ve had to change my life because of HNPP but I believe it has made me a better person all round, able to now appreciate the little things that matter, and lastly I pray everynight that all my hnpp friends will be as comfortable as they possibly can be, hope you enjoyed reading my little bit of life.