From: crystal WILLIAMS <timmycrystal@...>
Subject: RE: [ptc] Is PTC hereditary
To: ptc@yahoogroups.com
Date: Monday, April 27, 2009, 1:16 PM

Pseudotumor is not a fat person disease. I have been skinny my entire life. I was very thin when I was diagnosed 2 years ago. I am 5'4" and I weighed 125. I am still thin and I have had a shunt put in and revised 2 times. I am still battling this disease. It really makes me angry when people say it's a fat person disease. There are men and children that get this disease too. --- On Mon, 4/27/09, Ocean McIntyre <omcintyre@yahoo. com> wrote: From: Ocean McIntyre <omcintyre@yahoo. com> Subject: RE: [ptc] Is PTC hereditary To: ptc@yahoogroups. com, ptc@yahoogroups. com Date: Monday, April 27, 2009, 1:32 PM Shannan, When I was very young I was average sized. It was AFTER I started having issues that I started gaining weight. When I was in my teens I weighed 118 pounds at 5'3". Those years were hellacious! My IH actually improved a bit as I gained weight. And it has gotten continuously worse as I've lost weight over the last 5 years. My daughter was the same way. She was thin, energetic, atheletic.. until she started having headaches, double vision and being tired all the time. Now she's gained weight and even though we're being very careful about food and trying to get a good amount of physical exercise her weight isn't coming off.. I'm sure a large part of the weight problem in my family is based on genetics, but IH is definately NOT a fat persons disease! I know several IH folks who are technically UNDER weight and have shunts and still have issues. I would be much more apt to believe that there is a hormonal component to IH that effects some people in their weight. But of course, I'm not a doctor.. I'm just someone who's lived with this disease for the last 29 years. I'd also like to add that obesity is a disease on it's own. Not every overweight or obese person is that way because they constantly over eat. There are quite a number of people who have super effective bowel absorption and even when they eat LESS THAN 800 calories a day they still not only can't lose the weight, they will sometimes gain weight. Having lived a large portion of my life overweight or obese, and having tried to lose weight in pretty much every way only to have all the weight I lost plus some come back, and even after having a Duodenal Switch (which was the BEST decision I've ever made) and only being able to eat a fraction of what I was able to before.. it's the intestinal malabsorption that has given me the ability to lose weight and keep it off. It sucks that obesity is the one last area that it seems acceptable to humiliate and make fun of people. It's hard enough living life as an obese person without having people ridicule you on a daily basis. Just sayin' Ocean M. Shannan Bridgewater <shannan15434@ aim.com> wrote: >A fat person’s disease? I doubt you were obese at age 6 or that your daughter was obese at 7. I’m so sick and tired of people blaming obesity on diseases- why don’t they put the blame where it possibly belongs- diseases causing the obesity? > > > >From: ptc@yahoogroups. com [mailto:ptc@yahoogroups. com] On Behalf Of Ocean McIntyre >Sent: Monday, April 27, 2009 6:28 AM >To: ptc@yahoogroups. com; ptc@yahoogroups. com >Subject: Re: [ptc] Is PTC hereditary > > > > > > > > >I know the IHRF says that IH/PTC isn't hereditary, but there are some KNOWN families with this syndrome.. mine included. > >My mother had IH, my half-brother had IH (both deceased), I have IH and so does my 8 1/2 year old daughter. My daughter began having symptoms of IH at about age 7 and was diagnosed at age 7 1/2. I began having chronic symptoms at age 6 (had some symptoms beginning at age 5) which have only gotten progressively worse until I lost nearly all of my vision, and now have little sense of smell or taste, issues with nerve conduction and have suffered brain damage due to chronic super high ICP. I've been shunted, had ONSD/ONSF.. none of which helped. Oh, and I had bariatric surgery and lost over 200+ pounds which also hasn't helped one iota with the IH/PTC. > >My family's case has become a point of interest to my neuro-team because there are common links between those of us in the family with IH and because the normal treatments don't seem to work for us. All of the females also have PCOS, precocious puberty and extremely heavy cycles. We also have psoriasis and hidradenitis suppurativa (both are autoimmune diseases that effect the skin) and we have all had the impossible battled with obesity. My half-brother, on the other hand, was a very thin, slender, wirey guy.. tall and pretty much healthy his entire life until he developed a horrible headache while playing basket ball and then temporarily lost his vision. He was shunted 24 hours later to attempt to reverse vision loss, but even that wasn't a guarantee and he began having visual problems several months before he passed away, just a couple of years after being shunted. > >It's also suspected that my great-Aunt who went totally blind at age 31 probably also had IH. > >Hope this information helps you.. and rather than forking over a bunch of cash for an MRI (which generally shows nothing in IH patients, better to have her seen by an ophthalmologist. > >Best of luck to both of you! > >Ocean McIntyre > >jwtooblsd blessed <jwtooblsd@yahoo. com <mailto:jwtooblsd% 40yahoo.com> > wrote: > >>Hello, >> >> I was wondering if anyone knew/heard of PTC being hereditary? My 17yro has female issues and is presently on lupron shots, she has been having bad headaches. What through up a red flag to me, she said she has the swooshing sound in her ear and she is overweight. Her family doc put her on imitrex to see if it will help the headaches. If it does not, then I will be adament to get a mri. If anyone has any info, please let me know. >>Thanks, >>Janine/Texas >> >> >> >> >> >> > > > >No virus found in this incoming message. >Checked by AVG - www.avg.com >Version: 8.5.287 / Virus Database: 270.12.4/2081 - Release Date: 04/26/09 09:44:00