Ok- so now things are normal for my daughter- thank God! Now all we have to focus on is getting her son (with many indications of an autoimmune- maybe GH problem but tests are conflicting) some help! He is only 5 years old, has autoimmune problems like arthritis, psoriasis and now his bones are literally dissolving! OMG!
And I went to a medical conference last week and was very fortunate to get some one on one time with one of the country's leading adult endo's to explain our family history and my personal medical "woe's". He said I needed better care and that it looked like someone had dropped the ball on my issues for decades! At what point do we take a side and believe anyone? I think the answer to that question is when we actually start feeling better! And that has not happened for me yet. But after speaking with him....maybe there is light at the end of the tunnel.
On a good note, another mom who I have been helping for 3 years now (her daughter is now 28 and was on GH as a child but the adult endo's don't want to "revisit" that possibility) is finally in competent care and after gaining weight, loosing hormone control on many fronts, sleeping non stop, loosing muscle etc....is finally- FINALLY getting back on the drugs she should never have come off of...There are some miracles in this world! YAY!
So for now- I keep trying to get up each day and hope that my heart rhythm holds up long enough for me to get to someone with good knowledge and skills! Here's to hoping!!!
And I went to a medical conference last week and was very fortunate to get some one on one time with one of the country's leading adult endo's to explain our family history and my personal medical "woe's". He said I needed better care and that it looked like someone had dropped the ball on my issues for decades! At what point do we take a side and believe anyone? I think the answer to that question is when we actually start feeling better! And that has not happened for me yet. But after speaking with him....maybe there is light at the end of the tunnel.
On a good note, another mom who I have been helping for 3 years now (her daughter is now 28 and was on GH as a child but the adult endo's don't want to "revisit" that possibility) is finally in competent care and after gaining weight, loosing hormone control on many fronts, sleeping non stop, loosing muscle etc....is finally- FINALLY getting back on the drugs she should never have come off of...There are some miracles in this world! YAY!
So for now- I keep trying to get up each day and hope that my heart rhythm holds up long enough for me to get to someone with good knowledge and skills! Here's to hoping!!!
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