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What to do? (HNPP - non genetic?)

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    What to do? (HNPP - non genetic?)

    I've seen 2 neurologists over the past year after my bi-lateral neuropathy (drop wrist in both hands, first the left, then 1 month later the right).

    After going 2-3 times a month to doctors they finally did an hnpp test but it came back showing nothing wrong but the neurologist still said it was his opinion that it was a rare non-genetic form of hnpp.

    Anyone ever heard of this?

    It's just hard because he said this will probably never go away, and randomly every once and a while I will wake up with the ulnar or radial nerves damaged again from sleeping on them or even my legs from crossing them. He told me to never hold up a cell phone to my ear again.

    And I can't even do pushups without the pain coming back for around 4-6 hours and I've never found anything to help with that kind of pain.

    Without my hands and not really having any job skills, I feel like I'm going to be stuck with SSI living in rough parts of town the rest of my life.

    You might want to check out this site:

    I have never heard of the non-genetic form of this.

    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


      The genetic tests aren't perfect, so it's still possible that is what you have. Is one of the neurologists you saw an expert in peripheral neuropathy? If so, make sure you follow-up and see that doctor a few times a year, so they can confirm this is what you have and nothing else ?creeps up.

      Sometimes people with diabetes will also get this, so make sure the docs watch carefully to see if you develop diabetes. Then treating the diabetes will help.

      Have you already gone to rehab? Occupational therapy? This can help so get a prescription. Wrists braces may help while your nerves are repairing themselves.

      So avoid push-ups and listen to the doc so you develop good sleeping habits (ex. sleep on back) so you don't compress nerves while you sleep.

      But of course you are not doomed to a life of SSI! What line of work are you in? Can you get some more school or training under your belt? I know this must seem scary and discouraging, but I have a feeling you are young... time to think outside the box. You can do so many things sitting at a computer screen these days... Hang in there.


        How about searching for charities that specialise in helping disabled people back to work?

        I've been too ill to do any kind of work for over a decade. I struggle just to feed and wash myself and keep my flat clean :/ So I can't suggest any names but Im sure someone here must know of a few. Which country are you in, it doesn't say on your profile?

        Also think of any or all of the minority groups you may belong to , e.g ehtnic, LGBT, immigrant, single parent etc. And try charities/orgs for them too. They may be able to give advice or financial support to pay for equipment or training that would help you back to work.
        Some governments offer financial aid and advice to people returning to work after long periods of unemployment. So ask your nearest job centre/labour exchange.

        To improve employment prospects, consider doing voluntary work for a while. Doesn't have to be full time, it's often just an afternoon or two a week. Helps build confidence and looks postive on your CV.
        Last edited by Bear_on_wheels; 22 Dec 2012, 2:24 AM. Reason: corrected typos


          Are you currently unemployed? If so, how long has your disability kept you unemployed? I'm assuming at this point you're in the US unless you say otherwise. How much schooling do you currently have?

          Listen to the Drs, don't do things that exacerbate your illness. Do you have any paralysis of your lower extremities right now? I'm thinking no since you've been able to do push ups? The lack of being able to do those doesn't mean much in overall functioning, I've been unable to do those for ages due to ulnar nerve damage.

          I do not have radial nerve damage though. But there are many here around the forum that have very limited functioning of their hands due to quadriplegia and still are able to work. Maybe if you can give more detail on your hand functioning people can offer specific suggestions to assist you. There is a wealth of knowledge here.
          Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

          I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.


            Thanks everyone, I'm reading and doing research now. Yea the neurologist said he was 99% sure it was hnpp but the blood tests didn't show it. I just hate to have to worry the rest of my life about my limbs loosing function. If I even lay on my side within 5 minutes my arm and three fingers goes numb. Even crossing my legs for a few minutes and it stops working.

            The job I was at went out of business and this started about 6 months later so they put me on SSI. So I found a cheap apartment I'm living in now. I just feel so helpless and useless. Even typing after a while makes my arms start acting up.

            (Yes, I am in the US, the legs haven't gone fully paralysed yet. Thanks for the advice Lin, I will look around more on this forum, my neurologist basically said there is nothing to be done, and that things eventually might start not working more often as I get older and if the nerve crushes completely it won't ever work again. I'm finding it hard to fall asleep on my back)

            Good Idea Bear, maybe there is some kinds of charities or groups that would help with that. My SSI is actually for bi-polar and they have programs to help people get back to work, but all the jobs require things that I cannot do. Some days of the week I might, but on others I can't use my fingers, that top of the forearm goes numb and won't pull up the fingers). And I have Aspergers (the bi-polar is probably a wrong diagnosis, just part of the autism spectrum).

            So frustrating, so many obstacles physically and mentally.

            It's hard to be around new people, especially in small area's. I am 30, I got my 4 year degree in Psychology/Criminal Justice, but with the Aspergers I couldn't handle work for long. I managed to work at a bookstore for a little over a year but they went out of business. But I couldn't eat in front of the people there and they said I made them uncomfortable.

            I like animals. I just wish I could have a laid back job where if I was feeling bad or my arms/legs were acting up I could stay home. I can stay on SSI and work, but I would only get to keep $85 of my pay, after that they take half. So really I would just want to get off the SSI if I could, and I think they let me keep the medicaid.

            I mean I guess I can try emailing the dog shelter in my town, that's all I know to do. I wish I had land and a shelter for 50+ animals but I have no money.
            Last edited by wmc82; 23 Dec 2012, 5:06 AM.


              Do you know of Temple Grandin? I think you'd enjoy her books if not, she's autistic and an animal scientist. I also have aspergers. Interesting that you think your bipolar diagnosis is incorrect, I've been diagnosed as well and think its incorrect. For me though I feel the issue was the medication caused the severe swings in mood. I can see certain similarities in the symptoms and AS ones as well. I started on psych meds at 17 but I was living in a dysfunctional abusive househould. I think the meds did me more harm then help over the years and am much more stable now without them.

              My roommate has AS as well, he and I met at a mcdonalds there for the wifi. After a while we began to have short conversations and noticed the aspie in each other. He's said that people say he makes them uncomfortable as well but I don't see it. I think thats a big difference between the way symptoms are perceived by others in males and females, in males people tend to make the incorrect assumptions that a person may be dangerous.

              I have a genetic disorder thats progressive so I can relate about the fear towards the future and what function can be lost. My peripheral nerve damage was caused by dislocations caused by the genetic disorder.

              You should look into volunteering with area rescues as well as the dog shelter. Do you have any pets? Can you foster at all? Do you like all animals? I ask that one because sometimes its easier to foster exotic animals in an apartment, landlords can be more relaxed about caged animals. I've fostered herps and rats for a local exotic rescue. And you can do a lot of volunteer work for them from home, especially since rescues don't operate out of buildings the same way as a shelter. So you could do things such as type up educational materials, take emails or phone calls, work on their webpage or petfinder account, etc. Volunteer work can also help when looking for paid work since you'll have references and look like you've been busy.

              I wish I had land and money myself! I was actually working on opening a dog shelter a couple years ago before finances went down again along with my functionality. I'd still like to do so, I was going to start out just fostering a few dogs myself before expanding to other foster homes. I had a HUGE yard and permission to use the empty lot next door which my roommate and I had spoken to the owner about purchasing at some point. I was going to build a kennel so I could foster more animals by rotating the fosters in and out of the house (I have 2 dogs myself already, so I could foster 4 dogs instead of 2 by breaking it up this way.) Someday I'll do it. I can't foster at all where I'm currently living, I hate that. I can't wait to afford to move out of here. My current roommates are helping me while I go through a rough time financially.
              Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

              I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.


                My suggestion would be to go find another doctor. In my experience, neurologists tend to diagnose according to their speciality. And, as I was told in an earlier post, neurologists tend to be more interested in "the hunt" than in treatment. I went to 6 different doctors...each one recommending the next...until I finally went to the Mayo.

                And, going to the Mayo was probably also a mistake because once they declared I have SPMS, the two doctors I've seen since have each beguin the conversation with "well, the Mayo says you have MS...why are you here?".

                Keep looking...find a doctor that will treat you instead of suggesting you just wait around for it to get worse.


                  I am no expert on this so keep this in mind. If a parent or parentrs are still living and you were diagnosed as an Aspies before age 18 you might want to go to the nearest Social Security office and ask about getting social security based on their earnings. It would be more than SSI and, I think, move you to Medicare with Medicaid depending on the amount.

                  Please remember that even animal shelters need steady employees. Do explain that you don't mean to make others uncomfortable but part of the autism spectrem disorders like Aspies includes not processing social cues correctly. It is just a part of your disability. On the other hand most dogs love people with Aspies.
                  Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                  Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.