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Magnate
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Join Date: May 2007
Posts: 2,049
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Magnate
Join Date: May 2007
Posts: 2,049
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I am 55, and I live approximately 3 hours east of Mayo, which doesn't put me in Minnesota. My great grandfather is buried not far from Duluth, so I have family that settled Minnesota. My grandmother ended up on the 'Norweigan' side of the Mississippi river, LOL.
Many neuropathies are inherited.
Charcot Marie Tooth (CMT) and the HSNs (Hereditary Sensory Neuropathies) of which a new one hits the list every few months, are inherited. In addition, other diseases, which are inherited, such as Porphyria (autosmal dominant) result in neuropathy. There is a whole other category, 'Myopathies' which are named for muscle degeneration, but of which 49% can have PN. This group was at one time categorized and named into quite a few diseases by symptom. Recently, they have blown that all away, finding a variety of symptoms in families from very mild to very severe. Many of these myopathies go undiscovered because they are adult onset, median age 64, range 7 to 77. Unless the disease is severe and family realizes there is something going on, it goes undiscovered, misdiagnosed and remains, idiopathic.
Now, since the human genome has been mapped, all the diseases that used to have names are all being clumped into one, myopathy category until they sort out the abnormal protein accumulations and connect those to a gene. That will take a while.
Many people suffering from any of the idiopathic diseases, such as fibromyalgia, neuropathies etc, could, and I just say, could be in these categories of now un-named inherited neurological myopathies.
Many of them are autosomal dominant and not sex linked. Duchennes Muscular Dystrophy, a genetic, terminal illness, is a sex linked dominant disease with accumulation of a protein which they can link to a gene. There are others that are sex linked and gene linked.......HOWEVER
There are many that are not sex linked...they come from either parent, and are dominant. There are also recessive ones, but dominant ones cause the most havoc as they give a 50/50 chance of being passed on regardless of sex. To make matters more complex, symptoms vary from almost non-existant to very disabling within the same nuclear family groups.
Any one wanting more info can check out neuro.wustl. hereditary myopathies.
Again, they are rare, they do run in certain homogeneous ethnic groups. We are less aware of them here in the US as we are less in touch with extended family and genealogy past a great grandparent.
Don't expect to go to your neuro and have him act on this info....it is a really rough go to get it. You have to substantiate your need for further consideration. In other words, know a long family history, and have that history be from an affected area. Plus you need symptoms other than neuropathy. There is cutting edge research going on regarding this and it is no where settled. It only brings up more uncertainty. It is a hard place to be.
They can not do a test and say 'Yes, you carry the gene". We are years away from that.
I have always said, PN is a symptom.
A book??? Well, we will see. I don't know if I write that well.
And, I did not get to take home my pictures of me in the paper bikini...(Lord, my self esteem is bad enough-I did not want to see them!!!)
I have been in Sweden and experienced the midnight sun. We do not have that here where I live, although now and then we get some great auroras. Once when I lived 100 miles north of here, we actually ducked as it seemed they would hit us. Midnight sun does make an impression on you. Yes, I do get SAD. I have a light, and just cope. I think most of us in the northern tier states have a bit of trouble with the light swings...even though they are not as drastic here as in northern Scandinavia or Alaska. You just cope. It gets dark about 4:20- 4:15ish here...I think. I don't pay attention. It gets light around 7ish. Not too bad.
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