H.N.P.P. Treatments.

[StevieRush74]

I have H.N.P.P. and i'm 38yrs of aged, i've had severe palsys and pain for 20yrs but wasnt Diagnosed with H.N.P.P. until i was in my early 30's. With progressional and degenerative changes in symptoms i have found the following complaints...
1.    Painfull needle-like stabbing pains in legs, arms, shoulders, wrists and hands.
2.     Numbness in legs, arms, shoulders, wrists, and  hands that can last from 10min to upto 6months (in my experiences).
3.      Sleep disorders like Insomnia, nightsweats, nighttremors.
4.     Extreme lethargy, fatigue that can cause long term palsys (pain, numbness) during lenthy sleeps.
5.     Depression, anxiety, ptsd.
6.     Muscle Cramps, and  Lactic acid discomfort on legs only, without over exerting or too much walking/repetitions.
7.      Repetitive motor activities causing Palsys (pain/numbness).
8.     Muscle mass Degeneration. (Mainly legs, less in arms)
9.      Sciatic nerve pains,discomforts.
10.    More difficulty with fine motor activities ( buttons, zips, phones, writing, picking up, tieing shoe laces etc).

I have noted these symptoms as my most common, and most present.
I am posting this to try help others and help find good treatments, counceling, physio therapy, information and local specialist for sufferers of this restricting genetic mutation as well as myself.
Feel free to contact me regarding any of the above whether you are a doctor, neurologist, sufferer (Escpecially) as very little is known about H.N.P.P.
Question :- What are the Best and Most Availiable treatments for H.N.P.P.??......
Alternative ideas welcome, as are old home remedies and personal findings!!!
Hope to hear from you, Stephen.



This discussion is related to Auditory Neuropathy/HNPP.

[Justine70]

Hi Stephen, finally someone who understands what I'm going through :-) . When i have looked up information most of what you disscribe is never mentioned but I also suffer from most of what you discribe, so I never thought I would find someone else suffeing in  this way, even my neurologist report to my doctor painted my life like a walk in the park :\ Unfortunately I'm pretty tired at the moment so I will have to get back to you. It feels so good to be able to say that and know you'll understand. Thanks so much for posting Steven

[fourbambinos]

my ex partner has been diagnosed with h.n.p.p is it likely mine n his children will carry this through genes as my 16 year old has some of these symptoms .? and my 12 year old ?

[S. Kaul, MD]

Hey Stephen!
Well, though we have some research going on with gene therapy for HNPP, currently there is no cure for the condition; and management is largely symptomatic and preventive with splints, orthosis, protective pads, muscle bracing etc. Hopefully we can have a breakthrough in science in the next few years.

Take care!