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Old 04-10-2012, 07:39 AM
Susanne C. Susanne C. is offline
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Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
Susanne C. Susanne C. is offline
Member
 
Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
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Quote:
Originally Posted by Shezian View Post
Hi again

Is there anyone in here my age or younger?

Does it mean if l have PN younger I will in massive pain at a younger age?

How do you all deal with this?
It all just seems so negative from here.

Sorry but this is very depressing. I am normally a very happy person, but now l am worried and waiting for the sharp pains everyone is talking about.

Sue
Mine started in my early 30's with numbness in my toes, but actually the earliest symptoms were from childhood when I was impossibly awkward and clumsy. Mine is one of the hereditary neuropathies, and my extremely complicated parentage (adultery) meant that no one made the association between my half sister who wore leg braces and the fact that I couldn't run, skate, play sports, and only learnt to ride a bike with great difficulty. I also wore my shoes out on the sides, which I was punished for. I was made fun of by my family and other kids all those years.
I was afraid to mention the numbness to my doctor because all I knew about neuropathy was that diabetics got it and I was terrified of diabetes. When it reached my ankles in my mid 40's I finally brought it up. By that time my hands were also affected. I developed a severe infection from an unnoticed wound in my foot. The podiatrist who treated it refused to see me again until I had been evaluated by a neurologist. She, (the neurologist), was pretty certain it was CMT, but sent me to Johns Hopkins for second opinion and skin biopsy. I had more blood tests and one of the Athena tests for genetic neuropathies, HNPP, since I have pinched nerves. I decided, together with my neurologists, not to pursue testing.
So mine is slowly progressive and untreatable. I am 50 now. I walk with a hiking pole, and have difficulty driving more than a few miles due to cramping and weakness. I still have 3 of my 5 children at home, and my daughter has a new baby and needs my help. I taught high school English this year for the first time as I have been a stay at home, homeschooling mom all these years. It was a mistake. I am exhausted from getting up so early and dressing up and putting on makeup. I have to carefully plan my day and my resources.
I don't know if this helps. You seem to be in the early stages of being diagnosed. You may well have a treatable cause or one that responds to supplements. You can find workable pain relief, although you may never be totally pain-free. I am on 1800 mg. of gabapentin and low dose oxycodone as needed, which is more often lately, so I may need to switch to a patch or something. If yours is one of the untreatable ones, like mine, they usually progress slowly. Try not to panic. You will get some relief, some answers, and you will learn how to live with the disease if that is your lot. Yoga, stretching, walking, any non-stressful movement is helpful. I would not run until this is fully diagnosed. Any injury on top of your current symptoms will only complicate things. Good luck.
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"Thanks for this!" says:
Kitt (04-10-2012)