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04/11/2008 08:05
lynzie
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 Herro, When you have a little extra time, please go to http://www.hasanyonetoldyou.com/ I found it to be beautiful and uplifting, and it is my message to you. Anyone else who may be reading this is welcome to ge there as well!!! It's my way of saying to all of you that I care what you're going through and that you are not alone. I hope that you all have a beautiful day!

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04/12/2008 07:08
suelynnes
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 Hi, I am just checking in. I have had a rough couple of weeks. My brother in law had a rare form of parkinsons that did in 4 years what it takes most 15 years to do. He threw bilateral PE's a couple sundays ago and died that friday. He is the first of my husbands 13 siblings to die, so things have been a little down here.

I had my IGF-1 drawn and it was normal for the first time in at least 11 years. I then noticed that my humatrope pen was running out early. It appears it was not calibrated correctly so I have been receiving a higher dose than ordered. I don't care so much, because I feel better for the first time in a long time. The muscle cramping is worse, but the fatigue is better as is the nausea. Thank you for the concern. I appreciate it. Hopefully the cramping will get better as well and I can at least feel a little more normal for a while. Susan

Post edited by: suelynnes, at: 04/12/2008 09:09
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04/12/2008 07:56
herro
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 Hello! glad to see you are hanging in there. does igf-1 cause cramping???does it cause nausea???or is it other way around, like if it is too low??


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04/12/2008 13:09
lynzie
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 I'm sorry to hear about your brother in law. It's never easy to lose a loved one, but I hope it helps a little to know he's not suffering anymore. It's good that you are feeling better physically, though! Maybe if the dosage you have been getting on accident is working well for you your doc will prescribe a bigger dose for you. Anything that gets rid of nausea and fatigue is a good thing, although muscle cramping doesn't sound fun . Is the medication causing the cramps? Is there anything they could do to help those? I really hope that you and your doc can get the meds figured out so you can feel good! Hang in there, hon!! Lynzie

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04/14/2008 06:39
suelynnes
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 Low IGF-1 does cause muscle cramping in strange places like I have, but my level is much better and the cramping is still pretty viscious so I am not sure that is what is causing it. All of the normal stuff was ruled out. I get them on the front of my calfs and the back, in my hands, back and face. It is called tetany and I sure wish someone would figure out what is causing it before it takes a crack at my heart.

Thanks for the condolences. I am doing ok and I know my husband will be ok. I think being so worried about me is really adding to his burden in life right now. We will just both have to hang in there and know brighter days are coming. Susan
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04/17/2008 13:11
herro
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 hope you and hubby are doing better. time does do wonders...i lost my brother about 3 yrs ago. it used to be really hard to look at his pictures but now i find it comforting. i made a collage of pictures from his whole life so now i can look and remember...maybe your hubby would like to do this, or you can do it for him. i had everyone in the family pick out a couple of their favorite pics for my collage. i made it poster sized and then had prints made for my family. just a thought..low potassium can cause muscle cramping. have you tried eating a banana every day??

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04/17/2008 13:33
suelynnes
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 My potassium, calcium, magnesium and phosphorus are all fine, the cramping is from 28 years of not making any growth hormone. The doc says it may take up to a year to see if the hgh replacement is going to work. In the mean time, after the brain MRi and the surgeons commments about how my insides looked like they belonged to a much older person, they decided to do more testing and the bottom line is I may be 53 on the outside, but my insides are equivalent to a 77 year old. The brain can't be reversed, but the cardiovascular and most of the organ problems can be if the hgh works. Sometimes I don't know if I should be happy they finally figured this out or just cry and get it over with. Also, they found out that is was SHeehan's syndrome that caused the anterior pituitary to stop functioning. I hemmorrhaged after my one and only pregnancy when I miscarried at 14 weeks. It took 2 d&c's about 4 weeks apart to stop the bleeding. I just hope I can regain some of what I have lost and hopefully the social security disability people will understand all of this as the docs are not going to let me back to work any time soon and I have already been off for 3 years. What a pain in the tush. Susan

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04/17/2008 13:52
herro
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 wow, hope your body can heal itself. hey, my grandmother is 98 this yr, my father is 80..so you still have some yrs left!!just keep hanging in there! my dad still chops wood, plants a garden, goes fishing and hunting,...whatever he wants. drs told him he should slow down cuz of his health issues but he said he's going to do what he wants. he would rather drop dead then sit around the house!!i believe in the power of your mind, it can help heal your body. i have applied for ssd too, i am on disability from where i was working. we would all feel better if we didn't have to worry about ss. i have worked all my life until this...isn't that why we paid ss taxes??

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10/09/2008 14:15
suelynnes
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 Hi, I haven't check in for a while. I went to Mayo Clinic and they confirmed everything that was wrong and then some. I have secondary addison's from the pituitary nonfunction. There is definitely no tumor, everyone now feels it is Sheehan's syndrome and the Hashimoto's that caused this. They also found that in addition to regular old fibromyalgia, I have polymyalgia rheumatica which is like an inflammatory arthritis. So, I am now on steroids galore in addition to the growth hormone, thyroid hormone and diabetic meds. I feel like a walking hormone pharmacy. Susan
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