Chitchat

aerwin wrote:

Ok the Hematologist can find nothing wrong with my blood work. SO Thank God we have eliminated all the bad stuff. So now it is just down to figuring it out. He said it could be strep , allergies , lyme disease a myriad of possibilties. I reall do need Dr . House. So IF I am not better by Mon. I go back to be tested for lyme and strep. But I went back to running today . He said I could. That makes a huge difference in my nerves. Seriously.

YAY!!!!!!!

I am so happy for you, Aerwin! Good blood is very, very good news!

I am sorry you still have the symptoms and no further knowledge about what it IS, but knowing it is not all the really bad stuff is just so good.

That you are feeling well enough to run is just GREAT!!!

I am also rooting for you to buy some frozen corn and some raw hamburger and just tell him to make his own meals.

Also rent some lovely fun pro-gay movies and play them constantly. Here is an Amazon.com list, Best Gay Films.
http://www.amazon.com/Best-Gay-Films/lm/18NTQHL1WRVYF

BA - HA That is too funny about the gay films. I think I will leave Brokeback Mt. on the coffee table. Y'all just don't how grateful I am I have nothing serious.

Sounds like your whole family had an amazing day yesterday! I myself would choose the train ride over the bike hike!!

Aerwin, I think you should rent the whole series collection of Will and Grace and put that next to your copy of Brokeback Mountain!

Well, my son Justin was at the neurologist today for testing - the EMG on his nerves. They also did tests on his muscles with needles. It took about 2 hours. The doctor spent a long time with him. It seems Justin has a very rare (only 2 in 100,000) nerve disorder. The short name for it is HNPP. It is genetic. Some gene missing I guess. They want to run more tests. An MRI for sure, but also some blood work-up which for whatever reason is so expensive and rare to have done that they are waiting to see if our insurance will OK the test. It is the only test that would prove 100% that that is what he has. But all the symptoms are classic and the fact that my husband has some of the symptoms also makes it seem pretty probably.

There is no cure and not really any treatment. Just changing his lifestyle - being very careful what he does, how he sits, what he lifts etc. and lots of physical therapy. It never gets better, it only gets worse. You need to just be very careful not to injure your nerves because with each injury you get less feeling back until you become completely numb for good.

If anyone cares to read about it, here is a good site for info.

http://ghr.nlm.nih.gov/condition=hereditaryneuropathywithliabilitytopressurepalsies

Here is another good one:

http://millercenter.uchicago.edu/learnaboutpn/typesofpn/hereditary/hnpp.shtml

It is a good thing to read because they actually think more people have it than on record because so many people just don't know they have it. We did not know my husband had it until today. He was never properly diagnosed. He suffers from foot drop and after repeated injury his feet are numb.

If Justin has children there is a 50% chance that they will have it also.

So, we are waiting to hear what all tests they will do next and when they are scheduled for. We still do not know if he will need surgery. The Ulnar nerve is very compressed and the MRI will show just how entrapped it is.

He actually has a lot of atrophy in his left hand and some in his right and a little in his right leg. His right knee is completely numb. He has no reflexes at all when his knees are hit with that little hammer.

Needless to say, we could use some prayers and good vibes. I so did not expect this report I really thought it was just a one nerve issue brought on by the woodworking. Now we are looking at a lifetime problem. I am in a bit of a state of disbelief. So is Justin. Right now he is sure the doctor is wrong and making more out of it than it is because he said he felt fine before he built the furniture. He just does not get that the amount of atrophy shows it has been going on much longer. But I do not wish to upset him in anyway, so for now I will let him think this way. Who knows, maybe if the insurance allows us to get the blood work done we might get good news. I just don't think so though. Too much is point toward the HNPP.

Wow, FC, that is huge. Hugs and best vibes to you.

Might it be that your other son's tiredness and feeling weak is a form of the same thing?

Gonna go read some more.

FC...........I'm so sorry you didn't get better news. The articles do say that reocurrences may be far between and that the symptoms he is experiencing now will lessen. I hope so anyway. If that is what it turns out to be, it seems it can be managed with the right care. I will continue to hold him in my prayers and thoughts.

FC, I am so sad that this could mean lifelong problems for Justin. I bet you are still in shock that what you thought was a simple injury has turned into something with no cure. ((((hugs for you, your family, and Justin)))

I will go and read up on this illness when my company leaves Sunday. I am in the same boat as Aerwin this weekend..entertaining folks I have no connection with and not much in common with. One is an alcoholic and the other is a gambler.

Good thought Frazzle wondering if Justin and Eric may have the same problem...since it is a genetic nerve disorder.

I am so glad to hear you are out of the woods for any serious problems Aerwin and feel better about everything.

Well, I won't be around much this weekend...Hope everyone takes care and does something they enjoy.

It seems like a few of us have house guests. I've had my son and family here for the week. There have been some hectic times with all the little ones here. I've noticed some behaviors that I really don't like to see in children so young, but I don't see them changing.

Everyone needing a hug.................(((((((((huge hugs)))))))))))

FC, I also thought about your other son and his symptoms too.

FC I am saying prayers and sending good thoughts for you son . My house is CRAZY right now.

So did he inherit this condition? Surely there is some answer.

First off - thanks for the hugs and good thoughts. We need them.

Aerwin, yes it is inherited. My hubby has it. The full name of it is "Hereditary Neuropathy with liabilities to Pressure Palsies. Heredity is the only way you get it. At tis point there is no answer other than being very careful with your movements and therapy. For some there is pain and they can give you meds for that. But there is no cure.

Frazz, I asked the neurologist the same question. Could it be what Eric has and he said when he examined Eric (he looked very closely at all of Eric's limbs and tested his movements and strength) he did not see any signs of it. Doesn't mean it couldn't show up later in life like it did for my husband who had no noticeable symptoms until he was 51. In fact he went over Eric's records with me and wrote a prescription for a very mild antidepressant to help him sleep. I filled it, but Eric is not sure he wants to get started with taking antidepressants. The scary part about that is that my BIL suffers from depression - his body doesn't produce enough of "something" (I don't remember what it is called) but as long as he takes his meds he is fine. But Eric shows no signs of depression or anxiety attacks. BIL had such anxiety attacks if he was in a room with lots of people he would have to run out! That doesn't happen since the meds and now he loves parties! Take that Tom Cruise!

So Eric was going to read up on the medication and make a decision on whether he would take it. He is very health conscious and won't even eat processed foods right now! So if he reads things he doesn't like than I know he won't take them unless he reaches a point where he was told he had to.

When Justin got home from being out with friends (about midnight) he sat and talked with me. He is more excepting now that it may be true. He is very concerned with the thought of losing feeling and mobility in his fingers. He uses his fingers to play bass, all his drawing (he is gifted in that area) video games, texting - all those things teens do.

Sky, yes after the first injury to the nerve you usually get most or all of it back to normal. But after each injury you get less and less back until there is permanent damage so you need to be very careful. It is hard to be 17 and have to worry about how you sit and move for the rest of your life.

Have a nice day ladies. Enjoy your company as best you can!



ETA: FWIW, my 87 year old MIL has no feeling in her legs from the knees down. She now needs to walk with a 3 prong cane and will be giving up driving. She has seen 5 different doctors trying to get answers (over the last couple of years) and all they tell her is she has neuropathy "because she is old!" Can you believe they say that to her?! We are taking her out to dinner tonight for her birthday and I will tell her all we learned yesterday. I think she probably has the same thing and she passed it on to Rob and Justin.


AETA: Here is a paragraph that sums HNPP up very well:

Quote :

Hereditary Neuropathy with liability to Pressure Palsies or HNPP is a slowly progressive, hereditary, neuromuscular disorder which makes an individual very susceptible to nerve injury from pressure, stretch or repetitive use. When injured, the nerves demyelinate or lose their insulating covering. This causes episodes of numbness and weakness in the injured area, which are referred to as the ‘pressure palsies'. These episodes can be mild and more of a nuisance than anything, or so severe almost all movement in the affected limb is impossible. They may last several minutes to months. Because the symptoms can come and go, and most neurologists have not yet heard of or seen a case of HNPP, it can be very difficult and lengthy process to be diagnosed.

fc, I will hold your sons in my thoughts for positive outcomes. You've had a lot to deal with and you are one strong lady!

Aerwin, it's good to hear you feel good enough to run again. I think the running is therapeudic in itself. I know my doctor is all for it if it one's exercise of choice. I like running and stair climbing myself.

Quote :

.. his body doesn't produce enough of "something" (I don't remember what it is called) but as long as he takes his meds he is fine.

Serotonin?

Thank you Janice!

I am trying to be strong. It has been a tough year and few months let me tell you. Yesterday watching Justin get shocked repeatedly for 2 and half hours was upsetting and I kept wishing I could talk to my Dad about everything I miss him.

All I know Janice is that he has to take Lithium for a chemical imbalance. I am not sure which one he has trouble with it. He has been doing really well since taking the meds (though they made him really large) and I do not like to ask him much about it. I do know he never married or had kids because he was afraid of passing it on to his children. It is too bad because he loves kids and clearly adores my boys.

FC, you certainly have a heavy load...........I can't imagine 2 active teens having to endure the troubles they are facing. Being a mother you have to be strong and it isn't always easy. I'll keep you all in my thoughts and prayers.

FC I am certainly thinking and praying and sending good thoughts to you and your cute son. being a Mom I would be nuts. And I know you miss your Dad. I still miss my Dad and grandparents every day. Thank god i still have my Mum.

Unfortunately my glands have swollen up some again. I am also having terrible joint pain in my hip. I am still leaning toward lyme. Trust me I would be happy with that at tis point. Plus continue to keep me in your toughts and prayers.

Thanks Sky. I was up late reading a forum for people with HNPP to discuss what all they have gone through with it. It was depressing Some can't work anymore. I am very worried. I will try to stay positive because there are others that are doing fairly well. What upset me is there was one lady whose only early symptom was trouble sleeping and muscles feeling sore. Well, that is Eric's symptoms that the doctor couldn't find any other answer for. At the time there was no reason to consider HNPP. Now I wonder if there is anyway I could get the blood test for him too, that is if the insurance company OK's Justin getting the test. You know, until two weeks ago it seemed I had two perfectly healthy sons. I cannot believe this has happened.

Aerwin, I am sorry your glands swelled up again. I will continue to keep you in my thoughts and prayers. I've got quite a list going right now as I have a cousin dealing with a serious health issue right now also. I'm starting to feel like I've been hit by a truck

FC I am thinking of you and your sweet boy. I am going to think in the end everything will be ok and someone can have an answer that will help him permanently.

PHEW my company went whitewater rafting today . I had to stay here with the pups.

FC and Aerwin.................or anyone else who might need one....

Oh thanks! That is so adorable! Hugs back at ya!

I didn't know whether to put this in politics or chit-chat, but HOLY SHIT! Right?

Judge Orders YouTube to Give All User Histories to Viacom

Probably politics... scary.

My particular form of scare...one of my ancient tooth crowns (from 8th grade) fell off and broke the tiny bit of tooth holding it underneath.

SO today I am @1150 poorer (or more in debt) and I have no clue how much tomorrow, to get the crown put back on, will be.

This is on top of my car not passing the smog test two weeks ago which wound up costing me about $1000 to fix.

OBAMA!!!! PLEASE WIN!!!!!

So sorry about your crown and car Good luck with both. Crowns are expensive. I should know, I have about 8 of them For some reasons the nerves in my molars died and I needed a bunch of root canals and crowns. A bridge too. Now those a lot of money! How can such little things cost so much?

My insurance, which I will now thankfully have, starting September 1st, doesn't apply for anything until after that. But, unfortunately, I am having to completely and terrifyingly max out my three credit cards. No more time left, no more money, savings, cash, credit, left, nada.

Except that I have a good denial system, I am actually sort of in the same boat as the abrahammy people who have no place to go for $50, except I need about $3,000. But on the other hand, I am white and just-in-the-nick-of-time full time employed, so one way or another, I do believe I can find ways. but still:

I try not to make too huge a deal about what hideous financial straits I am in.. but AGHGHGHGH!!!! YIKES!!!! FUCK!!!!!


I really mean it that a democrat needs to be in place. Another republican will make costs go even higher, and make it so no possible breaks come to me. This is not some fantasy political belief..it is that a person like me will never benefit from republican policies. I am not saying others with different lifestyles won't (i.e. married with kids and home ownership and some job security over the years, stocks, that sort of thing) , but i sure won't.

p.s. It occurred to me that most likely those who own homes but bought them recently will suffer more profoundly from continued bushian repulican leadership (and how is McCain different?), too, but I have outrageous rent, not mortgage payments, so I do not know the ins and outs.

p.p.s. Harkening, circuitously, back to GE's post about google turnign over personal viewer info to Viacom, and other fears. both of the dentists I saw today (dentist and root canal guy) routinly have you put your social security number on required forms that the receptionist and anyone else behind the counter can get.

Do any of you know legal ways to get treatment while NOT giving them your social security number (also not signing the thing that basically says that even if they do something murderously incompetent that you waive the right to a judge or jury trial?)

My hubby says you are not required by law to give out your SS #. He doesn't, but sadly that number is needed on doctor forms because that is how a lot of the insurance is sorted and applied. So you are kind of stuck when you go to the doctor.

I know people can still sue for medical issues even if you sign the form. It is done all the time. We have just had two major cases here in the Chicago area where two people died during dental procedures (not to scare you). They signed the forms and the families were still able to sue and win their cases. But my guess is if you don't sign the forms some doctors won't perform the procedures. You can try though if you would rather not sign and see what happens.

So sorry this is happening before your insurance kicks in What a pisser!

Trust me, it is no picnic out there right now for those of us with large homes and HUGE property taxes and HUGE utilities bills and HUGE food bills with growing boys and HUGE car insurance payments for cars for them to get to their jobs and college and HUGE college costs and now HUGE medical expenses and you couldn't sell your house right now even if you wanted to because nobody is buying houses! Not a picnic at all

I know it ain't no picnic.

Things really suck in this country right now and I just don't know the answer or how and when it all can get fixed. I am in major bummer mood right now. My business is hurting because moms and dads are losing jobs so the kids can't come and the kids I've watch for moms who don't work but needed a day or two to get errands run, doc appointments etc. can't afford to come either. I'm going to have to advertise to try and find new kids and to run ads in the bigger papers to get the info out to the most people is not cheap The once a week small papers are not so bad, but the daily papers that get to all neighboring towns is crazy expensive!

The kids I watch from Oklahoma - their dad lost his job again. They are giving up and moving back to Oklahoma and they have their house on the market for less than they paid for it a few years ago and they STILL have not had ONE couple come through and see the house in the 5 weeks it has been on the market. Summer time and yet not one family has looked at this gorgeous home that is priced low to sell quick. Scary stuff.