Reb.......RE: Genetic or hereditary? Jackie (was) Re: No Pred for me...... :-( RE: started Prednisone today

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Thanks for the explanation Reb. Hugs, Jackie J From: MSersLife [mailto:MSersLife ] On Behalf Of Reb DSent: Thursday, August 18, 2011 2:55 AMTo: MSersLife Subject: Genetic or hereditary? Jackie (was) Re: No Pred for me...... :-( RE: started Prednisone today I would think that all hereditary conditions are genetic, but that a genetic condition isn't necessarily passed down from predecessors. Does sound a bit like splitting hairs I suppose, but genes can mutate, without that mutation having been passed down. Once a mutation is in place it may or may not be passed down to coming generations (not all mutations *can* even be passed down, but some can). That's part of the secret behind evolution (and the other part is of course the roles played by selectivity in mating, like when peafowl females systematically prefer males with spectacular tail feathers, and by the changes in environment). OK boring science lesson ends here... Just put it like this instead: Not everything going on in our genes can and will be passed down. love/Reb .>> Hmm, that doesn’t make sense does it? If it’s in the genes then you’d think that’s how it gets passed down, so it would be hereditary. I’ll look it up and see what the difference is. Unless MARION where are you? What is your thinking about it? > > > > works for Kaiser Permanente and has the same health insurance. It’s basically an HMO, and they don’t do anything they decide isn’t necessary to investigate further. He has brought in lots of literature and the Dr’s letter that dx’ed him and they won’t even look at it. Or believe in it. Much like how it was when FM was in its early stages of people trying to get awareness that such a thing even exists.> > Sighs and hugs, Jackie > > > > From: MSersLife [mailto:MSersLife ] On Behalf Of Sharon> Sent: Wednesday, August 17, 2011 7:46 PM> To: MSersLife > Subject: Genetic or hereditary? Jackie (was) Re: No Pred for me...... :-( RE: started Prednisone today> > > > > > > > > I was told by a doctor that some diseases are genetic but are not hereditary. Seems wrong somehow, doesn't it? lol> > > > Can see the doctor you see for your Dercums?> > > > hugs> > > > Sharon> This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.> > > > > > > > > > _____ > > To: MSersLife > Sent: Wednesday, August 17, 2011 12:44 AM> Subject: RE: No Pred for me...... :-( RE: started Prednisone today> > > > Isn’t hereditary the same as genetic? Its one or the other. G-mother passes it to daughter, daughter to her daughter or son and so forth. Yes Tina does have the same areas of lumps that I do, and FM. I feel really bad for her because her husband tells her if she’d only lose weight she wouldn’t have the problems. Not so! Steve has lost 56 lbs and his FM is as bad as it always was if not worse. And Dercums makes it impossible to lose its fat. So we are kind of stuck. > > > > had his MRI today and it came back clear. They didn’t use any contrast, so we really don’t know if there might be some lesions there or not. His Dr. said she didn’t know what was causing his headaches or back pain, and so she put him on Wellbutrin and wants him to taper off his pain meds. He’s at a low dose as it is, and if he doesn’t have something to take the edge off he can barely walk, or function. She didn’t even address the Dercums with him. These are the times when I hate being disabled the most is when I can’t go to the Dr. appts with my kids and “educate†the Dr’s about what they seem to ignore. They just want to try all these alternative treatments, and most of them do not work for Dercums. Very frustrating. > > Hugs, Jackie > > > > From: MSersLife [mailto:MSersLife ] On Behalf Of Sharon> Sent: Monday, August 15, 2011 2:05 PM> To: MSersLife > Subject: Re: No Pred for me...... :-( RE: started Prednisone today> > > > > > > > That sounds awful, Jackie! So is Dercums is hereditary or genetic? Does Tina have any of the problems like you have?> > > > hugs> > > > Sharon> This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.> > > > > > > > > > _____ > > To: MSersLife > Sent: Sunday, August 14, 2011 11:39 PM> Subject: RE: No Pred for me...... :-( RE: started Prednisone today> > > > Yes you can, but the surgeon has to understand that they are not typical lipomas. If they don’t get the full lump, the surrounding tissue and root, it will grow back and develop others. That’s what happens, as it did with . They assumed he just had regular lipomas and took 2 out that were pressing on his lower spine, and 3 or 4 grew back. It’s actually a disease of the fat so any fatty areas can be infiltrated and form these lumps. But you don’t have to be overweight to have Dercums. Liposuction has been tried but is not recommended for those who have FM. If a lump is particularly painful and pressing on a nerve or causing loss of function then some people have opted to have them removed knowing that it won’t stop others from forming in other areas. It’s not unusual for someone to develop over 300 lumps, ranging in size from a grain of rice to a softball. My biggest one is about the size of a walnut and its right in the center below my sternum. If they get into the lungs or heart it can be fatal. All the symptoms of FM go along with Dercums, only you can’t exercise and once the fat becomes disease you can’t get rid of it. The lumps then spread into the tissues and form strings of pearls nodules. My ribs are like that and are probably the most painful. It’s hard to know if it’s those flaring or the MS hug when I have breathing problems and the tightness around there. > > Not a fun illness to have. I would say Dercums recognition is at the stage FM was in the 80’s. No one believes that fat can hurt, and can’t be exercised away. > > Sorry about the length. Long explanation for a short question. Hugs, Jackie > > > > From: MSersLife [mailto:MSersLife ] On Behalf Of Sharon> Sent: Sunday, August 14, 2011 1:39 PM> To: MSersLife > Subject: Re: No Pred for me...... :-( RE: started Prednisone today> > > > > > Now I understand the ban on prednisone for you! If the Dercums lumps get too painful do you have the have them surgically removed?> > > > hugs> > > > Sharon> This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.> > > > > > > > > > _____ > > To: MSersLife > Sent: Sunday, August 14, 2011 7:41 AM> Subject: No Pred for me...... :-( RE: started Prednisone today> > > > Hey Sharon! Predisone is a no no for the Dercums as it causes the lumps to grow, or develop new ones. I use to get cortisone shots in my shoulders, and hips years ago and they really helped with those joint pains, but now I’ve learned that the cortisone may be responsible for the Dercums. So the Dr. who is doing the research says to stay away from Pred. I surely do not need any more of these painful lumps. We found a couple more on my good arm

that may be the cause of the pains in my wrist and hand, pressing on nerves. There isn’t anything to stop them from forming in all areas. [sigh] > > Hope you continue to get better! J> > Hugs and love, Jackie > > > > From: MSersLife [mailto:MSersLife ] On Behalf Of Sharon> Sent: Saturday, August 13, 2011 7:08 PM> To: MSersLife > Subject: Re: started Prednisone today> > > > > > Thanks Jackie. Yes I am feeling better. Prednisone is a miracle for me I swear. What are the ill effects of the drug for you? > > > > hugs> > > > Sharon> This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.> > > > > > > > > > _____ > > To: MSersLife > Sent: Saturday, August 13, 2011 7:32 AM> Subject: RE: started Prednisone today> > > > Sharon I sure can relate. I’ve been having some of these same issues. I can only guess it’s from our high humidity, because its not as hot here as it is there, but humidity makes it seem hotter. I’m just now getting over some TN. Its in my right ear and down that side of my face. I can’t take pred. so I just have to wait it out. Hope you are getting relief now that you’ve been on it for a few days. > > Hugs. Jackie > > > > From: MSersLife [mailto:MSersLife ] On Behalf Of Sharon> Sent: Thursday, August 11, 2011 3:10 PM> To: Group> Subject: started Prednisone today> > > > > > Over the past week it has been harder and harder for me to walk. It feels like walking through jello--only worse. I am dragging bad. Then yesterday the TN pain came back with stabs in the right side of my ear. So I am on Predisone. > > > > I am counting on feeling fantastic by tomorrow:)> > > > hugs> > > > Sharon> This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects.>