Question:
>Thanks for the info. Luckily they knew how to contact your adoptive family >so they could be informed and have you tested.
Yea, kind of neat, the childrens home society took care of all that. It does warm my heart. Hugs, Susan
Response:
>I was at Hopkins back in the late 70’s they ruled something out on me. >(Takayasu’s arteritis)
Sure glad that was ruled out!! Sounds like you had a great experience, or at least an interesting one. I hope they don’t expect me to find myself around, I will certainly need direction. I got lost in one of our home town hospitols once. It was kind of scary. Should be interesting. Hugs, Susan
Response:
>It was like all the ills of the world came together under one roof!
What a thought! >They were so thorough and so efficient and that was ‘in the olden >days’, so I can only imagine the way things would be now! High tech and >superior!
That’s what I’m hoping for. >You will be getting the best ‘Susie q’ so have no worries about it! Let >your doctor do the worrying and you do the travelling… look at it as >an ‘adventure’!
Yes, I will try to have fun and maybe they will find out that I am not so different after all! (Fingers crossed) Hugs, Susie Q-Ha
Response:
My experience with the Mayo was in Nov ‘70 and I too remember all kinds of different people from all over the world with everything that you can think of ‘wrong’ with them from horrible illnesses to cancers to genetic deformities! It was like all the ills of the world came together under one roof! A good roof to be under though… man oh man the care was phenomenally good! They were so thorough and so efficient and that was ‘in the olden days’, so I can only imagine the way things would be now! High tech and superior! You will be getting the best ‘Susie q’ so have no worries about it! Let your doctor do the worrying and you do the travelling… look at it as an ‘adventure’! Hugs from Shelagh http://continue.to/lupus "Beverley" <beverly.brow…@verizon.net> wrote in message
news:FAHba.19711$iq1.8203@nwrddc02.gnilink.net… – Hide quoted text — Show quoted text -> I was at Hopkins back in the late 70’s they ruled something out on me. > (Takayasu’s arteritis) Obviously if I had it I’d been dead by now so I guess > they were right! > Unless they have re-built it or built a new one it is a huge old hospital. > You are never seen by just one doctor but by droves of young medical > students. It was a strange experience for me but everybody was very nice. My > husband had to take me and leave me there alone. Our children were very > small. I was there for about a week. The staff was great and they always > asked if the students could be part of whatever. Often the students would > ask me questions or ask to examine me, too. I never minded but it was odd to > be such a center of attention. > Seems they had general rounds and then a different group did rounds with my > doctor. Then it seems I was wheeled off into the bowels of the hospital for > some sort of testing several times a day. I have no idea where I was as each > trip was long and twisted through long corridors. I remember asking one of > the transport people if they ever got lost. > Also I don’t think I ever saw so many people from all over the world under > one roof. > ACK – I’m late for work!! > Bev
Response:
Susan, Thanks for the info. Luckily they knew how to contact your adoptive family so they could be informed and have you tested. Hugs, Sherry "SAppl38220" <sappl38…@aol.com> wrote in message
news:20030312080205.22012.00000150@mb-fs.aol.com… – Hide quoted text — Show quoted text -> Sherry, > I tried dragging a link to this reply but it wouldn’t let me. I must not be > doing it right–shock. > Chronic Granomatous Disease is a disease where the body cannot fight bacterial > infections and they can become fatal if not treated quickly and aggressivly. > My 11 yr. old birth brother (Lonnie) passed away from it in 1984. My birth > mother must have been the carrier who passed it to me as a carrier and the > disease to Lonnie. When the u of m dianosed Lonnie at 2 mo. of age, they then > got in touch with my parents (as I was adopted) and then at 6 I was dx as a > carrier. > Kind of interesting and apparently very rare. One doc said there are only 300 > families in the world who have this genetic disorder. Mine is x-linked of > course but it can also be autosmal (sp) where a girl can have it too. > Just from my poor memory. > Hugs, > Susan
Response:
I was at Hopkins back in the late 70’s they ruled something out on me. (Takayasu’s arteritis) Obviously if I had it I’d been dead by now so I guess they were right! Unless they have re-built it or built a new one it is a huge old hospital. You are never seen by just one doctor but by droves of young medical students. It was a strange experience for me but everybody was very nice. My husband had to take me and leave me there alone. Our children were very small. I was there for about a week. The staff was great and they always asked if the students could be part of whatever. Often the students would ask me questions or ask to examine me, too. I never minded but it was odd to be such a center of attention. Seems they had general rounds and then a different group did rounds with my doctor. Then it seems I was wheeled off into the bowels of the hospital for some sort of testing several times a day. I have no idea where I was as each trip was long and twisted through long corridors. I remember asking one of the transport people if they ever got lost. Also I don’t think I ever saw so many people from all over the world under one roof. ACK – I’m late for work!! Bev "SAppl38220" <sappl38…@aol.com> wrote in message
news:20030311172049.27654.00000137@mb-mc.aol.com… – Hide quoted text — Show quoted text -> Thanks for the search J. > I’ll be doing a lot of reading in the next few wks. > Hugs, > Susan
Response:
>Chronic Granomatous Disease
My spelling really su**s–Chronic Granulomatous Disease-there thats right. I think.
Response:
Ok Janers and Grace, I am convinced, skin and muscles do count. : ) *I* feel as though they do, but was unsure what others might think since there are some with kidney and other internal organs at risk. Thank you for taking the time to clear this up. The doc called later yest. evening and wants me in this morning for more labs.These labs take 2-3 wks to come back, so then he will schedule the adventure to JH. Hugs, Susan
Response:
I used to think: Skin? No big deal… compared to other Lupus issues, anyhow. But then I had a skin episode — first torturously itches hives everywhere. Then, dry, peeling skin, flaking everywhere — I was walking clouds of skin — it was so disgusting, and often really uncomfortable. I was utterly miserable and it took many months for it to entirely clear up. When it was on my face, my eyelids swelled up, and I didn’t want anyone to see me. When it hit my feet, they swelled up and then cracked… and I couldn’t really walk on them, and couldn’t fit in shoes. That’s past now, hopefully for good…. In any case, I would now never say "it’s just skin…" Grace.
Response:
Sherry, I tried dragging a link to this reply but it wouldn’t let me. I must not be doing it right–shock. Chronic Granomatous Disease is a disease where the body cannot fight bacterial infections and they can become fatal if not treated quickly and aggressivly. My 11 yr. old birth brother (Lonnie) passed away from it in 1984. My birth mother must have been the carrier who passed it to me as a carrier and the disease to Lonnie. When the u of m dianosed Lonnie at 2 mo. of age, they then got in touch with my parents (as I was adopted) and then at 6 I was dx as a carrier. Kind of interesting and apparently very rare. One doc said there are only 300 families in the world who have this genetic disorder. Mine is x-linked of course but it can also be autosmal (sp) where a girl can have it too. Just from my poor memory. Hugs, Susan
Response:
Hey Susan You are counting skin and muscles> Well hon, did you know that skin and muscles are major organs of your tiny little body? HONEST it is? If you have muscular problems, believe me those little buggers are everywhere. Your esophagus is a muscle, your heart, your liver your what ever. So see these are organs that make the body work. All in all YOU have NOTHING to feel guilty about. We all suffer in one form or another. So no guilt needed there. Now the skin? makes up for a wonderful covering of them MUSCLES that you so deservedly need to be treated with care. These added all together give us the picture of someone suffering in pain. And that my dear is why you should go to JH and get some help. It might be something your doc overlooked or something that this new doc will think to test. There is hope somewhere. HEY don’t you ever feel guilty of anything. We all our human and we all hurt. Some more than others but hey we are here for everyone. Skin and muscles and all LOL Janers beside that? Most of my problems are related to the muscular end and you don’t see me shutting up do you ???? hahaha
Response:
Thanks for the great story Suzie! I really needed to hear that right now. (By the way, I love your name, that’s what my family calls me) – Hide quoted text — Show quoted text ->Hey Susan, >Johns Hopkins has a reputation for being absolutely one of the best. >The only experience that my family had had was back I think in the twenties >(1920’s) >my grandmother went there after suddenly going blind from a fever >(typhoid?). >She stayed there for a month or so and came back with her full eyesight. >They’ve got my vote!! >Suzie >"SAppl38220" <sappl38…@aol.com> wrote in message >news:20030311140606.27208.00000150@mb-fd.aol.com… >> Hi All! >> Just got back from my scheduled Reumy appt. >> My Doc. wants to send me to Johns Hopkins to see a friend of his, I can’t >think >> of her name, but she is a leading dr on Lupus and CGD (an immune disease >that I >> carry) >> I am not sure why he is feeling he needs her help, I think that I confuse >him. >> He said that I am an interesting case, CGD just complicates things. He >will >> make the arrangements and call me next week. All I want is to feel >better, if >> she can help then I am all for it. (even though it is 2000 miles away. >sigh.) >> He just put me on more Pred. and took me off the Arava. >> Has anyone on this board gone to John Hopkins, if so please tell about >your >> experience. I am a little apprehensive. >> Thanks >> Susan
Response:
Susan, My mind has gone blank on me….as usual. Please refresh me on what CGD is. I think that it is wonderful that your mom will be able to go with you to John Hopkins. I sure hope that the doc will have some answers for you. All of us will be on pins and needles waiting to hear of the plans for your trip and the out come. Hugs, Sherry "SAppl38220" <sappl38…@aol.com> wrote in message
news:20030311210504.12228.00000120@mb-fn.aol.com… – Hide quoted text — Show quoted text -> >Good luck with the reading Susan, and I wish you alot of luck with your > >visit to the JH clinic/hospital? > Thank you. > I will surely keep everyone updated. I am not scared, just curious, and hoping > to find out why I have unusual symptoms and have my whole life. I am sure it > is because of my carrier status of CGD. I met a girl on the net who is also a > carrier in Canada and has been to NIH several times because she is showing > signs of the disease-bad infections and sores. Us carriers of this disease are > tracked throughout our lives and so are our children, my dd is also a carrier. > That is why I am so shocked it took this long to find out that Lupus goes along > with being a carrier. (kind of like a bad side effect–hehe) > My doc said that the Mayo doesn’t know enough about CGD, but that sure would be > closer, I live in Duluth MN. > >Think positive and ‘keep that chin up’! (my dad used to say that when he > >knew one or more of us 7 girls were scared about something… a good > >memory) > My chin is firmly in the *up* position. > Your a dear. Thanks again > Susan
Response:
Hey Susan, Johns Hopkins has a reputation for being absolutely one of the best. The only experience that my family had had was back I think in the twenties (1920’s) my grandmother went there after suddenly going blind from a fever (typhoid?). She stayed there for a month or so and came back with her full eyesight. They’ve got my vote!! Suzie "SAppl38220" <sappl38…@aol.com> wrote in message
news:20030311140606.27208.00000150@mb-fd.aol.com… – Hide quoted text — Show quoted text -> Hi All! > Just got back from my scheduled Reumy appt. > My Doc. wants to send me to Johns Hopkins to see a friend of his, I can’t think > of her name, but she is a leading dr on Lupus and CGD (an immune disease that I > carry) > I am not sure why he is feeling he needs her help, I think that I confuse him. > He said that I am an interesting case, CGD just complicates things. He will > make the arrangements and call me next week. All I want is to feel better, if > she can help then I am all for it. (even though it is 2000 miles away. sigh.) > He just put me on more Pred. and took me off the Arava. > Has anyone on this board gone to John Hopkins, if so please tell about your > experience. I am a little apprehensive. > Thanks > Susan
Response:
>Good luck with the reading Susan, and I wish you alot of luck with your >visit to the JH clinic/hospital?
Thank you. I will surely keep everyone updated. I am not scared, just curious, and hoping to find out why I have unusual symptoms and have my whole life. I am sure it is because of my carrier status of CGD. I met a girl on the net who is also a carrier in Canada and has been to NIH several times because she is showing signs of the disease-bad infections and sores. Us carriers of this disease are tracked throughout our lives and so are our children, my dd is also a carrier. That is why I am so shocked it took this long to find out that Lupus goes along with being a carrier. (kind of like a bad side effect–hehe) My doc said that the Mayo doesn’t know enough about CGD, but that sure would be closer, I live in Duluth MN. >Think positive and ‘keep that chin up’! (my dad used to say that when he >knew one or more of us 7 girls were scared about something… a good >memory)
My chin is firmly in the *up* position. Your a dear. Thanks again Susan
Response:
Thanks Janers, You are *so* sweet. I know there are "sicker" Lupies out there who could really use this option. I am feeling a little guilty since my major organs are not involved, (unless you count skin and muscles.) But there is a reason that my doc is doing this and I am hurting alot and *do* want to find out why. I guess this lady doc works at NIH and Johns Hopkins so he said it could be either one. When I find out more I’ll be able to make arrangements. My Mom is going with me and DH will stay home to take care of the store. We will see. Hugs Susan – Hide quoted text — Show quoted text ->Hi Susan >John Hopkins is a very well renowned hospital. I have no dealing with them >personally but it is what people have said. >I know the distance for you would be alot but at least getting the opinion >of a good doctor is never a bad idea. That way she can work with your >doctor at home to help him or her understand you case better. >I hope you find out more, and at least if you have to stay over there, >contact the hospital and ask them IF there is a place where you can be >right there at the hospital. Cleveland has a hospitality house we could of >used so try that route. Save you hotel and motels if you have to be there >MORE than one day. >Hang in there, it is going to be better. Need anything, let me know >hugs >janers
Response:
Thanks for the search J. I’ll be doing a lot of reading in the next few wks. Hugs, Susan
Response:
Good luck with the reading Susan, and I wish you alot of luck with your visit to the JH clinic/hospital? I know they have a terrific rep. so that should be comforting. I was referred to the Mayo in Roch. Minn. when I was 18 years old and it was a very scarey time for me… but at my age now, I think I would better tolerate the different environment and all the docs to see and stuff… it might even be wise to think of it as an adventure?! Think positive and ‘keep that chin up’! (my dad used to say that when he knew one or more of us 7 girls were scared about something… a good memory) — Hugs from Shelagh http://continue.to/lupus "SAppl38220" <sappl38…@aol.com> wrote in message
news:20030311172049.27654.00000137@mb-mc.aol.com… – Hide quoted text — Show quoted text -> Thanks for the search J. > I’ll be doing a lot of reading in the next few wks. > Hugs, > Susan
Response:
Hi Susan John Hopkins is a very well renowned hospital. I have no dealing with them personally but it is what people have said. I know the distance for you would be alot but at least getting the opinion of a good doctor is never a bad idea. That way she can work with your doctor at home to help him or her understand you case better. I hope you find out more, and at least if you have to stay over there, contact the hospital and ask them IF there is a place where you can be right there at the hospital. Cleveland has a hospitality house we could of used so try that route. Save you hotel and motels if you have to be there MORE than one day. Hang in there, it is going to be better. Need anything, let me know hugs janers
Response:
SAppl38220 wrote: > Hi All! > Just got back from my scheduled Reumy appt. > My Doc. wants to send me to Johns Hopkins to see a friend of his, I can’t think > of her name, but she is a leading dr on Lupus and CGD (an immune disease that I > carry)
<http://www.google.com/search?q=CGD+autoimmune+%22Johns+hopkins%22&btn…> If you want to look throught some of those to see what they’re about. Hugs J – Hide quoted text — Show quoted text -> I am not sure why he is feeling he needs her help, I think that I confuse him. > He said that I am an interesting case, CGD just complicates things. He will > make the arrangements and call me next week. All I want is to feel better, if > she can help then I am all for it. (even though it is 2000 miles away. sigh.) > He just put me on more Pred. and took me off the Arava. > Has anyone on this board gone to John Hopkins, if so please tell about your > experience. I am a little apprehensive. > Thanks > Susan
Response:
Hi All! Just got back from my scheduled Reumy appt. My Doc. wants to send me to Johns Hopkins to see a friend of his, I can’t think of her name, but she is a leading dr on Lupus and CGD (an immune disease that I carry) I am not sure why he is feeling he needs her help, I think that I confuse him. He said that I am an interesting case, CGD just complicates things. He will make the arrangements and call me next week. All I want is to feel better, if she can help then I am all for it. (even though it is 2000 miles away. sigh.) He just put me on more Pred. and took me off the Arava. Has anyone on this board gone to John Hopkins, if so please tell about your experience. I am a little apprehensive. Thanks Susan
If you like this post and would like to receive updates from this blog, please subscribe our feed.