worried about my stepdaughter
Question:
thanks for all the loving thoughts re alana. yes, she has been seen by an endocrinologist, as well as a neurologist. the endocrinologist took her off her reglan to see if that might be raising her prolactin level, so of course, her gi symtoms are way bad. i don’t think there are any teaching hospitals near her. i am now in the awkward position of not wanting to badger her too much, because she is starting to resist a bit. and we all know what it’s like to be badgered to "try this/do that." i will proceed with caution. d
Response:
(((Diane))) 24/7 will continue…donnah – Hide quoted text — Show quoted text – > thanks for all the loving thoughts re alana. yes, she has been seen by an > endocrinologist, as well as a neurologist. the endocrinologist took her off her > reglan to see if that might be raising her prolactin level, so of course, her > gi symtoms are way bad. i don’t think there are any teaching hospitals near > her. i am now in the awkward position of not wanting to badger her too much, > because she is starting to resist a bit. and we all know what it’s like to be > badgered to "try this/do that." i will proceed with caution. > d
Response:
Sometimes diseases will only be classified by the doctor once a set of symptoms reach a certain level. Until then he says "all OK". Truth is the difference between one disease and another, or having a disease and not, is often a blurred boundary of a few symptoms and levels. In the meantime, while you don’t have sufficient evidence to classify a name, the reality is – all is not well. Don’t wait till something is named to take action, and likewise don’t be satisfied that nothing is found or given a name, therefore all is well, for that could be a serious mistake. regards David
– Hide quoted text — Show quoted text -> wow, Diane. thanks for sharing that. i will push harder for her to see a > rheumy, altho she has seen a neuro and the mri showed no lesions. at least not > yet. > and thanks for your prayers, all. > diane >I hate to tell you that’s how my symptoms started out down to the >high prolactin level that to this day has never been explained. They said >sometimes it can happen with the MS lesions in the right place and that’s >all they’ve said. Please encourage her to meet with both a good neuro and a >good rheumy. I will keep her in my thoughts and prayers. >– >Cyberhugs, >DianeW
Response:
Sending prayers for Alana…for strength and answers quickly! Hoping your hills are never too steep! Be well, Patty
Response:
I haven’t a clue. perhaps someone else will. If not, one suggestion I might make is see if you can get her to see some docs at a teaching hospital if there’s a decent one relatively nearby. Teaching hospitals have many specialties in one places who are accustomed to working with each other and it’s often the place to get to the bottom of a confusing illness. ((((Diane and stepdayghter))) — Nann remove the Gator cheer to email me "To array a man’s will against his sickness is the supreme art of medicine." …Henry Ward Beecher
Response:
>i am also >nagging her about getting a referral to a rheumy.
Keep nagging her Diane. She needs to get to the bottom of this, and a RD is the next logical step. (Or so it seems to me.) She may not be a child of your body, but she is obviously a child of your heart. I sure hope she gets some answers soon. Prayers coming her way. (You going to be able to make it to Iowa in July? Maybe? Maybe?) Char "Remember, I’m pulling for ya’. We’re all in this together." Red Green
Response:
Diane, we started a 24/7 prayer vigil for Alana..donnah – Hide quoted text — Show quoted text – > hi guys, > my son in law got my computer back in working order. hooray! but his wife, my > stepdaughter, is really worrying me. i swear, it’s as though she and i are > blood relatives. she has always reminded me of myself and now she is getting > symptoms that, IMO, point to an autoimmune disease, although there are none in > her family. please let me tap your collective wisdom to see if you have any > ideas what’s going on with her. > she is 28, an architect, who has had GI problems and UTI’s since she was a kid, > and off and on headaches for years. her headaches have changed in quality and > are pretty constant now. her blood work has all been normal except for an > elevated prolactin level. (normal is under 29, hers is 277). a pituitary tumor > was suspected, but has been ruled out (at least a large one has been ruled out) > by mri. most troubling is that she is now starting to ache all over, more > muscular than joint. her GP thinks it’s fibromyalgia, although that doesn’t > explain the prolactin issue. she is also battling nearly daily nausea now. she > also has what might be "fibro-fog" and is starting to have some trouble with > memory and stringing sentences together, although this would probably not be > noticeable to someone who doesn’t know her. it’s so hard to watch her going > down hill, as those of you with sick kids know. she lives a few hours from me, > so i only get to see her every month or so and the deterioration is marked. we > communicate a lot by phone and email, tho, because i can relate so well to the > "what the hell is happening to me?" feeling she’s enduring. > please send prayers and good vibes in Alana’s direction. i’ve encouraged her to > get on the fibro support group, but she is not interested in that. i am also > nagging her about getting a referral to a rheumy. > diane, worried.
Response:
guess we are thinking along the same lines, Ari…you beat me to it..but it was my first reaction when I read Diane’s post…so many people scoff at the thyroid as being important including docs…donnah – Hide quoted text — Show quoted text – > I skimmed this post, so forgive me if you mentioned this, but why the > hell hasn’t she been to see an endocrinologist?????? > hi guys, > my son in law got my computer back in working order. hooray! but his wife, my > stepdaughter, is really worrying me. i swear, it’s as though she and i are > blood relatives. she has always reminded me of myself and now she is getting > symptoms that, IMO, point to an autoimmune disease, although there are none in > her family. please let me tap your collective wisdom to see if you have any > ideas what’s going on with her. > she is 28, an architect, who has had GI problems and UTI’s since she was a kid, > and off and on headaches for years. her headaches have changed in quality and > are pretty constant now. her blood work has all been normal except for an > elevated prolactin level. (normal is under 29, hers is 277). a pituitary tumor > was suspected, but has been ruled out (at least a large one has been ruled out) > by mri. most troubling is that she is now starting to ache all over, more > muscular than joint. her GP thinks it’s fibromyalgia, although that doesn’t > explain the prolactin issue. she is also battling nearly daily nausea now. she > also has what might be "fibro-fog" and is starting to have some trouble with > memory and stringing sentences together, although this would probably not be > noticeable to someone who doesn’t know her. it’s so hard to watch her going > down hill, as those of you with sick kids know. she lives a few hours from me, > so i only get to see her every month or so and the deterioration is marked. we > communicate a lot by phone and email, tho, because i can relate so well to the > "what the hell is happening to me?" feeling she’s enduring. > please send prayers and good vibes in Alana’s direction. i’ve encouraged her to > get on the fibro support group, but she is not interested in that. i am also > nagging her about getting a referral to a rheumy. > diane, worried. > — > Are you registered as a bone marrow donor? You regenerate what you > donate. You are offered the chance to donate only if you match a person > on the recipient list. Call your local Red Cross and ask about > registering to be a bone marrow donor. > spam trap: replace shyah_right with hotmail when replying
Response:
wow, Diane. thanks for sharing that. i will push harder for her to see a rheumy, altho she has seen a neuro and the mri showed no lesions. at least not yet. and thanks for your prayers, all. diane – Hide quoted text — Show quoted text ->I hate to tell you that’s how my symptoms started out down to the >high prolactin level that to this day has never been explained. They said >sometimes it can happen with the MS lesions in the right place and that’s >all they’ve said. Please encourage her to meet with both a good neuro and a >good rheumy. I will keep her in my thoughts and prayers. >– >Cyberhugs, >DianeW
Response:
Diane, how was her thyroid level checked? Was it just part of a regular CBC…if so, she needs to see an endrocrinologist and do the whole blood work they specifically run…donnah – Hide quoted text — Show quoted text – > thanks for that info, alex. no, she’s not pregnant. and her thyroid’s been > checked, but i will pass that info onto her anyway. interesting. > diane >Says that a Prolactin of 10 to 300 ng/ml may be a sign of pregnancy. >Is there a chance? >It also says that it could be an indicator of Hypothyroidism which is >often misdiagnosed as FMS because some of the symptoms are similar. >http://www.nlm.nih.gov/medlineplus/ency/article/000353.htm >Sending Good thoughts, >{{{{Alana}}}} >GramPaHugs, >Alex,
Response:
thanks for that info, alex. no, she’s not pregnant. and her thyroid’s been checked, but i will pass that info onto her anyway. interesting. diane – Hide quoted text — Show quoted text ->Says that a Prolactin of 10 to 300 ng/ml may be a sign of pregnancy. >Is there a chance? >It also says that it could be an indicator of Hypothyroidism which is >often misdiagnosed as FMS because some of the symptoms are similar. >http://www.nlm.nih.gov/medlineplus/ency/article/000353.htm >Sending Good thoughts, >{{{{Alana}}}} >GramPaHugs, >Alex,
Response:
Prayers are being said for you both. Duckie – Hide quoted text — Show quoted text – > hi guys, > my son in law got my computer back in working order. hooray! but his wife, my > stepdaughter, is really worrying me. i swear, it’s as though she and i are > blood relatives. she has always reminded me of myself and now she is getting > symptoms that, IMO, point to an autoimmune disease, although there are none in > her family. please let me tap your collective wisdom to see if you have any > ideas what’s going on with her. > she is 28, an architect, who has had GI problems and UTI’s since she was a kid, > and off and on headaches for years. her headaches have changed in quality and > are pretty constant now. her blood work has all been normal except for an > elevated prolactin level. (normal is under 29, hers is 277). a pituitary tumor > was suspected, but has been ruled out (at least a large one has been ruled out) > by mri. most troubling is that she is now starting to ache all over, more > muscular than joint. her GP thinks it’s fibromyalgia, although that doesn’t > explain the prolactin issue. she is also battling nearly daily nausea now. she > also has what might be "fibro-fog" and is starting to have some trouble with > memory and stringing sentences together, although this would probably not be > noticeable to someone who doesn’t know her. it’s so hard to watch her going > down hill, as those of you with sick kids know. she lives a few hours from me, > so i only get to see her every month or so and the deterioration is marked. we > communicate a lot by phone and email, tho, because i can relate so well to the > "what the hell is happening to me?" feeling she’s enduring. > please send prayers and good vibes in Alana’s direction. i’ve encouraged her to > get on the fibro support group, but she is not interested in that. i am also > nagging her about getting a referral to a rheumy. > diane, worried.
Response:
I skimmed this post, so forgive me if you mentioned this, but why the hell hasn’t she been to see an endocrinologist?????? – Hide quoted text — Show quoted text – > hi guys, > my son in law got my computer back in working order. hooray! but his wife, my > stepdaughter, is really worrying me. i swear, it’s as though she and i are > blood relatives. she has always reminded me of myself and now she is getting > symptoms that, IMO, point to an autoimmune disease, although there are none in > her family. please let me tap your collective wisdom to see if you have any > ideas what’s going on with her. > she is 28, an architect, who has had GI problems and UTI’s since she was a kid, > and off and on headaches for years. her headaches have changed in quality and > are pretty constant now. her blood work has all been normal except for an > elevated prolactin level. (normal is under 29, hers is 277). a pituitary tumor > was suspected, but has been ruled out (at least a large one has been ruled out) > by mri. most troubling is that she is now starting to ache all over, more > muscular than joint. her GP thinks it’s fibromyalgia, although that doesn’t > explain the prolactin issue. she is also battling nearly daily nausea now. she > also has what might be "fibro-fog" and is starting to have some trouble with > memory and stringing sentences together, although this would probably not be > noticeable to someone who doesn’t know her. it’s so hard to watch her going > down hill, as those of you with sick kids know. she lives a few hours from me, > so i only get to see her every month or so and the deterioration is marked. we > communicate a lot by phone and email, tho, because i can relate so well to the > "what the hell is happening to me?" feeling she’s enduring. > please send prayers and good vibes in Alana’s direction. i’ve encouraged her to > get on the fibro support group, but she is not interested in that. i am also > nagging her about getting a referral to a rheumy. > diane, worried.
– Are you registered as a bone marrow donor? You regenerate what you donate. You are offered the chance to donate only if you match a person on the recipient list. Call your local Red Cross and ask about registering to be a bone marrow donor. spam trap: replace shyah_right with hotmail when replying
Response:
Of course Alana is now on my prayer list. Please don’t let the stress of worrying about her cause you to flare. Gwen
Response:
Hi Diane, http://www.nlm.nih.gov/medlineplus/ency/article/003718.htm Says that a Prolactin of 10 to 300 ng/ml may be a sign of pregnancy. Is there a chance? It also says that it could be an indicator of Hypothyroidism which is often misdiagnosed as FMS because some of the symptoms are similar. http://www.nlm.nih.gov/medlineplus/ency/article/000353.htm Sending Good thoughts, {{{{Alana}}}} GramPaHugs, Alex, – Hide quoted text — Show quoted text – > hi guys, > my son in law got my computer back in working order. hooray! but his wife, my > stepdaughter, is really worrying me. i swear, it’s as though she and i are > blood relatives. she has always reminded me of myself and now she is getting > symptoms that, IMO, point to an autoimmune disease, although there are none in > her family. please let me tap your collective wisdom to see if you have any > ideas what’s going on with her. > she is 28, an architect, who has had GI problems and UTI’s since she was a kid, > and off and on headaches for years. her headaches have changed in quality and > are pretty constant now. her blood work has all been normal except for an > elevated prolactin level. (normal is under 29, hers is 277). a pituitary tumor > was suspected, but has been ruled out (at least a large one has been ruled out) > by mri. most troubling is that she is now starting to ache all over, more > muscular than joint. her GP thinks it’s fibromyalgia, although that doesn’t > explain the prolactin issue. she is also battling nearly daily nausea now. she > also has what might be "fibro-fog" and is starting to have some trouble with > memory and stringing sentences together, although this would probably not be > noticeable to someone who doesn’t know her. it’s so hard to watch her going > down hill, as those of you with sick kids know. she lives a few hours from me, > so i only get to see her every month or so and the deterioration is marked. we > communicate a lot by phone and email, tho, because i can relate so well to the > "what the hell is happening to me?" feeling she’s enduring. > please send prayers and good vibes in Alana’s direction. i’ve encouraged her to > get on the fibro support group, but she is not interested in that. i am also > nagging her about getting a referral to a rheumy. > diane, worried.
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Response:
(((((((((((((((((((((diane)))))))))))))))))) how scary. i’ve just put alana on my list. kate
hi guys, my son in law got my computer back in working order. hooray! but his wife, my stepdaughter, is really worrying me. i swear, it’s as though she and i are blood relatives. she has always reminded me of myself and now she is getting symptoms that, IMO, point to an autoimmune disease, although there are none in her family. please let me tap your collective wisdom to see if you have any ideas what’s going on with her. she is 28, an architect, who has had GI problems and UTI’s since she was a kid, and off and on headaches for years. her headaches have changed in quality and are pretty constant now. her blood work has all been normal except for an elevated prolactin level. (normal is under 29, hers is 277). a pituitary tumor was suspected, but has been ruled out (at least a large one has been ruled out) by mri. most troubling is that she is now starting to ache all over, more muscular than joint. her GP thinks it’s fibromyalgia, although that doesn’t explain the prolactin issue. she is also battling nearly daily nausea now. she also has what might be "fibro-fog" and is starting to have some trouble with memory and stringing sentences together, although this would probably not be noticeable to someone who doesn’t know her. it’s so hard to watch her going down hill, as those of you with sick kids know. she lives a few hours from me, so i only get to see her every month or so and the deterioration is marked. we communicate a lot by phone and email, tho, because i can relate so well to the "what the hell is happening to me?" feeling she’s enduring. please send prayers and good vibes in Alana’s direction. i’ve encouraged her to get on the fibro support group, but she is not interested in that. i am also nagging her about getting a referral to a rheumy. diane, worried.
Response:
No advice, sweetie, but Alana will definitely be added to our prayer list. I worry about my two kids as well. Rob has often exhibited clear signs of FMS, but as a 23-year old guy, there’s no way he’ll admit it until he has to. Anyway, both you and Alana will be prayed over regularly. We love you! DeeTee DeeTee and Bob Taggart http://home.earthlink.net/~bdtaggart/
– Hide quoted text — Show quoted text -> hi guys, > my son in law got my computer back in working order. hooray! but his wife, my > stepdaughter, is really worrying me. i swear, it’s as though she and i are > blood relatives. she has always reminded me of myself and now she is getting > symptoms that, IMO, point to an autoimmune disease, although there are none in > her family. please let me tap your collective wisdom to see if you have any > ideas what’s going on with her. > she is 28, an architect, who has had GI problems and UTI’s since she was a kid, > and off and on headaches for years. her headaches have changed in quality and > are pretty constant now. her blood work has all been normal except for an > elevated prolactin level. (normal is under 29, hers is 277). a pituitary tumor > was suspected, but has been ruled out (at least a large one has been ruled out) > by mri. most troubling is that she is now starting to ache all over, more > muscular than joint. her GP thinks it’s fibromyalgia, although that doesn’t > explain the prolactin issue. she is also battling nearly daily nausea now. she > also has what might be "fibro-fog" and is starting to have some trouble with > memory and stringing sentences together, although this would probably not be > noticeable to someone who doesn’t know her. it’s so hard to watch her going > down hill, as those of you with sick kids know. she lives a few hours from me, > so i only get to see her every month or so and the deterioration is marked. we > communicate a lot by phone and email, tho, because i can relate so well to the > "what the hell is happening to me?" feeling she’s enduring. > please send prayers and good vibes in Alana’s direction. i’ve encouraged her to > get on the fibro support group, but she is not interested in that. i am also > nagging her about getting a referral to a rheumy. > diane, worried.
Response:
Diane – I hate to tell you that’s how my symptoms started out down to the high prolactin level that to this day has never been explained. They said sometimes it can happen with the MS lesions in the right place and that’s all they’ve said. Please encourage her to meet with both a good neuro and a good rheumy. I will keep her in my thoughts and prayers. — Cyberhugs, DianeW
– Hide quoted text — Show quoted text -> hi guys, > my son in law got my computer back in working order. hooray! but his wife, my > stepdaughter, is really worrying me. i swear, it’s as though she and i are > blood relatives. she has always reminded me of myself and now she is getting > symptoms that, IMO, point to an autoimmune disease, although there are none in > her family. please let me tap your collective wisdom to see if you have any > ideas what’s going on with her. > she is 28, an architect, who has had GI problems and UTI’s since she was a kid, > and off and on headaches for years. her headaches have changed in quality and > are pretty constant now. her blood work has all been normal except for an > elevated prolactin level. (normal is under 29, hers is 277). a pituitary tumor > was suspected, but has been ruled out (at least a large one has been ruled out) > by mri. most troubling is that she is now starting to ache all over, more > muscular than joint. her GP thinks it’s fibromyalgia, although that doesn’t > explain the prolactin issue. she is also battling nearly daily nausea now. she > also has what might be "fibro-fog" and is starting to have some trouble with > memory and stringing sentences together, although this would probably not be > noticeable to someone who doesn’t know her. it’s so hard to watch her going > down hill, as those of you with sick kids know. she lives a few hours from me, > so i only get to see her every month or so and the deterioration is marked. we > communicate a lot by phone and email, tho, because i can relate so well to the > "what the hell is happening to me?" feeling she’s enduring. > please send prayers and good vibes in Alana’s direction. i’ve encouraged her to > get on the fibro support group, but she is not interested in that. i am also > nagging her about getting a referral to a rheumy. > diane, worried.
Response:
Of course prayers and hugs You may want to stress to her that a good RD may well figure out the root of her problem, even if it isn’t arthritis. They are less likely that another doctor to just roll their eyes when a female patient complains "I just ache all over." Only a fraction of autoimmune disease is clearly genetic. It might well run in her family but others haven’t had the same triggers she may have had. I’ve seen explanations that autoimmune problems are not so much from an overactive immune system as from an overstimulated one. And that infection, etc can cause that kind of damage to an otherwise normal immune system. — Jo Firey "Life is not measured by the number of breaths we take, but by the moments that take our breath away."
> hi guys, > my son in law got my computer back in working order. hooray! but his wife, my > stepdaughter, is really worrying me. i swear, it’s as though she and i are > blood relatives. she has always reminded me of myself and now she is getting > symptoms that, IMO, point to an autoimmune disease, although there are none in > her family. please let me tap your collective wisdom to see if you have any > ideas what’s going on with her. > she is 28, an architect, who has had GI problems and UTI’s
since she was a kid, – Hide quoted text — Show quoted text -> and off and on headaches for years. her headaches have changed in quality and > are pretty constant now. her blood work has all been normal except for an > elevated prolactin level. (normal is under 29, hers is 277). a pituitary tumor > was suspected, but has been ruled out (at least a large one has been ruled out) > by mri. most troubling is that she is now starting to ache all over, more > muscular than joint. her GP thinks it’s fibromyalgia, although that doesn’t > explain the prolactin issue. she is also battling nearly daily nausea now. she > also has what might be "fibro-fog" and is starting to have some trouble with > memory and stringing sentences together, although this would probably not be > noticeable to someone who doesn’t know her. it’s so hard to watch her going > down hill, as those of you with sick kids know. she lives a few hours from me, > so i only get to see her every month or so and the
deterioration is marked. we > communicate a lot by phone and email, tho, because i can
relate so well to the – Hide quoted text — Show quoted text -> "what the hell is happening to me?" feeling she’s enduring. > please send prayers and good vibes in Alana’s direction. i’ve encouraged her to > get on the fibro support group, but she is not interested in that. i am also > nagging her about getting a referral to a rheumy. > diane, worried.
Response:
hi guys, my son in law got my computer back in working order. hooray! but his wife, my stepdaughter, is really worrying me. i swear, it’s as though she and i are blood relatives. she has always reminded me of myself and now she is getting symptoms that, IMO, point to an autoimmune disease, although there are none in her family. please let me tap your collective wisdom to see if you have any ideas what’s going on with her. she is 28, an architect, who has had GI problems and UTI’s since she was a kid, and off and on headaches for years. her headaches have changed in quality and are pretty constant now. her blood work has all been normal except for an elevated prolactin level. (normal is under 29, hers is 277). a pituitary tumor was suspected, but has been ruled out (at least a large one has been ruled out) by mri. most troubling is that she is now starting to ache all over, more muscular than joint. her GP thinks it’s fibromyalgia, although that doesn’t explain the prolactin issue. she is also battling nearly daily nausea now. she also has what might be "fibro-fog" and is starting to have some trouble with memory and stringing sentences together, although this would probably not be noticeable to someone who doesn’t know her. it’s so hard to watch her going down hill, as those of you with sick kids know. she lives a few hours from me, so i only get to see her every month or so and the deterioration is marked. we communicate a lot by phone and email, tho, because i can relate so well to the "what the hell is happening to me?" feeling she’s enduring. please send prayers and good vibes in Alana’s direction. i’ve encouraged her to get on the fibro support group, but she is not interested in that. i am also nagging her about getting a referral to a rheumy. diane, worried.
Response:
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