Question:
Hi Stephanie:))) I know what you mean. I just posted here to Janers. When I pushed send to group it went from hotmail to my Rogers send box , which showed one email. So hmmm , not to be outdone I pressed send again and it said sending 8 messages. Now I see Janers made it to group but where did the other seven go and what were they? Now not only me has bad memory Bruce On. " here and there me thinks:)))
Response:
In article <QpKdnUNfGM7FA13cRVn…@rogers.com>, Bruce <rothnie2…@hotmail.com> wrote >Hi Stephanie:))) >I know what you mean. I just posted here to Janers. When I pushed send to >group it went from hotmail to my Rogers send box , which showed one email. >So hmmm , not to be outdone I pressed send again and it said sending 8 >messages.
When it says "Hit the send key" it does not mean with a 14lb hammer 
— Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!
Response:
Hmmm , thanks Andy:))) Bruce On. " tis so cold here I fear it was frozen "
Response:
I am on webtv and posted here a time or two and it got send back to my mail box saying undeliverable lol ((((((((((hugs)))))))))) Melody
Response:
Play it again , Melody Bruce On. "I know andy , weak but the best me can do , have frozen:))) "
Response:
I had a appointment with another neuro yesterday, via satellite. She told me I present symptoms of both ms and cns lupus. She ordered the test I had been dreading. She ordered a lumbar puncture. I had a lumbar puncture done 11 yrs ago due to a headache so bad I was incoherent. It was before anyone knew I had lupus, anyways they did not numb me or anything and they missed the first time so they had to do it again and the second time they did not numb me either. It hurt so bad I thought I was going to pass out, I was screaming as loud as I could hoping they would pull the needle or what ever it was out of my back, and I swore I would never have it done again. It traumatized me that much. I told the neuro of my experience, and she said I have to have it done so they can get me the treatment I need. The neuro is also questioning why my rhummey is not treating my lupus more aggressively. I was on that plaquenil but because I suffered horrid headaches he took me off it it. Now my rhummey does not want me on any type of chemo because I have no spleen, unless it is life threatening. The other neuro I was seeing I call him the mean one has had me on 3,000 mg of keppra a day, and seeing how no one knows why I even take it, this neuro wants me off of it. Which is totally fine with me, those pills are huge and taking six of em a day is not fun. My reg doc was in the room with me, so the neuro had my doc do some tests, like pretending I am walking on a straight line, she had me stand up and hold my arms up, I flunked the memory test. She tested the reflexes on my legs and arms and I had no reflexes on my right side at all then my doc flashed this light into my eyes I am not sure what test she was doing but she told the neuro she would have to dialate my eyes. Neuro told me that ms and cns lupus are very serious and that I will need to get treated right away. That scared me. Sometimes I feel like a ticking time bomb. I was so upset when I left I got sick. After the neuro was done seeing me she told me to leave the room and that she needed to talk with my reg doc in private. The nurse walked me out of the room so I asked her do I wait in the lobby or go home or what she said she didn’t know so I just went home. I had alot of questions for my doctor and no one even told me when to get a follow up. And the lumbar puncture I am scared I am going to go to the hospital see the needle and say I am outta here and freak out. My anxiety level is so high right now, I am scared plumb to death. And if neuro is right and I have the cns lupus and I have to be on chemo, will I be able to go outside, shopping, will I loose all my hair. Will I have to stay in doors all the time so I don’t risk catching a virus or getting sick? My girls school plays, will I be able to go to them? These are some of the questions I have and wanted to ask my doctor. My reg doc is really cool, she is not a rhummey or a neuro just a reg md but to me she plays all three roles my rhummey does not consult with neuro and when he sends reports to my reg doc its a miracle. I also have this cognitive thing going on witch neuro suspects is from a cns lupus involvement. If anyone can please help or offer support please, let me know. Neuro also said I have to have neuro tests preformed and I need to see a therapist. Thanks in advance (((((((((hugs)))))) Melody
Response:
Oh Melody! I haven’t posted in awhile, but I was so upset by your post I had to write to tell you that you are in my prayers. I can only imagine how this is all very frightening and overwhelming. I have not had experience with anything you are talking about except that I have had MANY spinal taps due to another condition I have. I know how terrifying they can be. My first one was pretty horrendous as well — an internist was doing it and nicked the nerves and it was quite painful. However — to give you some hope — since then I have had a number of needles in the back/spinals and NONE were like the first. From then on I insisted on an anesthesiologist (sp?) or my pain doc (who is an anesthesiologist as well) to do my spinal taps. They numb with lidocaine, which feels like a small bee sting in the back (not nice but bearable) and then the needle going in feels like a dull to moderate ache. That is all you should feel if a good anesthesiologist is doing it. I know each of us senses pain differently — but I swear the lead up is worse than the actual event. You may want to ask if you can have someone you trust with you to hold your hand and distract you through the procedure. Many times only a nurse is allowed to be there — but I would express your fears to her and ask her to be the support — someones hand to squeeze and someone to talk you through it. And lastly, I have found that deep breathing helps — I take a deep breath right before the first needle goes in — and I breath out hard through my mouth with pursed lips during the initial sting of pain (kinda like labor breathing!). Then I do slow controlled breaths (in through nose, out through pursed lips) during the rest when there is the aching. This helps relax your muscles and takes down on the pain. And lastly, one time I had way too many needles stuck in my back and I broke down and cried to my doc and he ordered Adivan to relax me before the procedure. This may be an option for you. I am so sorry that you must endure all of this. Please keep us updated on how you are doing. Let me know if there is anything else I can tell you about surviving spinal taps. Let us know when it is scheduled so we can all be sending prayers your way on that day. Stephanie "Lassy Lass" <MelodyMans…@webtv.net> wrote in message
news:23442-41BF5224-15@storefull-3218.bay.webtv.net… – Hide quoted text — Show quoted text ->I had a appointment with another neuro yesterday, via satellite. She > told me I present symptoms of both ms and cns lupus. She ordered the > test I had been dreading. She ordered a lumbar puncture. > I had a lumbar puncture done 11 yrs ago due to a headache so bad I was > incoherent. It was before anyone knew I had lupus, anyways they did not > numb me or anything and they missed the first time so they had to do it > again and the second time they did not numb me either. It hurt so bad I > thought I was going to pass out, I was screaming as loud as I could > hoping they would pull the needle or what ever it was out of my back, > and I swore I would never have it done again. It traumatized me that > much. > I told the neuro of my experience, and she said I have to have it done > so they can get me the treatment I need. > The neuro is also questioning why my rhummey is not treating my lupus > more aggressively. I was on that plaquenil but because I suffered > horrid headaches he took me off it it. > Now my rhummey does not want me on any type of chemo because I have no > spleen, unless it is life threatening. > The other neuro I was seeing I call him the mean one has had me on 3,000 > mg of keppra a day, and seeing how no one knows why I even take it, this > neuro wants me off of it. Which is totally fine with me, those pills > are huge and taking six of em a day is not fun. > My reg doc was in the room with me, so the neuro had my doc do some > tests, like pretending I am walking on a straight line, she had me stand > up and hold my arms up, I flunked the memory test. She tested the > reflexes on my legs and arms and I had no reflexes on my right side at > all then my doc flashed this light into my eyes I am not sure what test > she was doing but she told the neuro she would have to dialate my eyes. > Neuro told me that ms and cns lupus are very serious and that I will > need to get treated right away. That scared me. Sometimes I feel like > a ticking time bomb. I was so upset when I left I got sick. After the > neuro was done seeing me she told me to leave the room and that she > needed to talk with my reg doc in private. The nurse walked me out of > the room so I asked her do I wait in the lobby or go home or what she > said she didn’t know so I just went home. I had alot of questions for > my doctor and no one even told me when to get a follow up. > And the lumbar puncture I am scared I am going to go to the hospital see > the needle and say I am outta here and freak out. My anxiety level is > so high right now, I am scared plumb to death. > And if neuro is right and I have the cns lupus and I have to be on > chemo, will I be able to go outside, shopping, will I loose all my hair. > Will I have to stay in doors all the time so I don’t risk catching a > virus or getting sick? My girls school plays, will I be able to go to > them? These are some of the questions I have and wanted to ask my > doctor. My reg doc is really cool, she is not a rhummey or a neuro just > a reg md but to me she plays all three roles my rhummey does not consult > with neuro and when he sends reports to my reg doc its a miracle. I > also have this cognitive thing going on witch neuro suspects is from a > cns lupus involvement. If anyone can please help or offer support > please, let me know. Neuro also said I have to have neuro tests > preformed and I need to see a therapist. Thanks in advance > (((((((((hugs)))))) Melody
Response:
Hmmm — sorry about the three posts. Have NO idea how that happened. "Stephanie Townsend" <ler…@hotmail.com> wrote in message
news:EqydnR0B25G0HSLcRVn-jg@comcast.com… – Hide quoted text — Show quoted text -> Oh Melody! > I haven’t posted in awhile, but I was so upset by your post I had to write > to tell you that you are in my prayers. I can only imagine how this is all > very frightening and overwhelming. I have not had experience with anything > you are talking about except that I have had MANY spinal taps due to > another > condition I have. I know how terrifying they can be. My first one was > pretty > horrendous as well — an internist was doing it and nicked the nerves and > it > was quite painful. However — to give you some hope — since then I have > had > a number of needles in the back/spinals and NONE were like the first. From > then on I insisted on an anesthesiologist (sp?) or my pain doc (who is an > anesthesiologist as well) to do my spinal taps. They numb with lidocaine, > which feels like a small bee sting in the back (not nice but bearable) and > then the needle going in feels like a dull to moderate ache. That is all > you > should feel if a good anesthesiologist is doing it. I know each of us > senses > pain differently — but I swear the lead up is worse than the actual > event. > You may want to ask if you can have someone you trust with you to hold > your > hand and distract you through the procedure. Many times only a nurse is > allowed to be there — but I would express your fears to her and ask her > to > be the support — someones hand to squeeze and someone to talk you through > it. And lastly, I have found that deep breathing helps — I take a deep > breath right before the first needle goes in — and I breath out hard > through my mouth with pursed lips during the initial sting of pain (kinda > like labor breathing!). Then I do slow controlled breaths (in through > nose, > out through pursed lips) during the rest when there is the aching. This > helps relax your muscles and takes down on the pain. And lastly, one time > I > had way too many needles stuck in my back and I broke down and cried to my > doc and he ordered Adivan to relax me before the procedure. This may be an > option for you. > I am so sorry that you must endure all of this. Please keep us updated on > how you are doing. Let me know if there is anything else I can tell you > about surviving spinal taps. Let us know when it is scheduled so we can > all > be sending prayers your way on that day. > Stephanie > "Lassy Lass" <MelodyMans…@webtv.net> wrote in message > news:23442-41BF5224-15@storefull-3218.bay.webtv.net… >>I had a appointment with another neuro yesterday, via satellite. She >> told me I present symptoms of both ms and cns lupus. She ordered the >> test I had been dreading. She ordered a lumbar puncture. >> I had a lumbar puncture done 11 yrs ago due to a headache so bad I was >> incoherent. It was before anyone knew I had lupus, anyways they did not >> numb me or anything and they missed the first time so they had to do it >> again and the second time they did not numb me either. It hurt so bad I >> thought I was going to pass out, I was screaming as loud as I could >> hoping they would pull the needle or what ever it was out of my back, >> and I swore I would never have it done again. It traumatized me that >> much. >> I told the neuro of my experience, and she said I have to have it done >> so they can get me the treatment I need. >> The neuro is also questioning why my rhummey is not treating my lupus >> more aggressively. I was on that plaquenil but because I suffered >> horrid headaches he took me off it it. >> Now my rhummey does not want me on any type of chemo because I have no >> spleen, unless it is life threatening. >> The other neuro I was seeing I call him the mean one has had me on 3,000 >> mg of keppra a day, and seeing how no one knows why I even take it, this >> neuro wants me off of it. Which is totally fine with me, those pills >> are huge and taking six of em a day is not fun. >> My reg doc was in the room with me, so the neuro had my doc do some >> tests, like pretending I am walking on a straight line, she had me stand >> up and hold my arms up, I flunked the memory test. She tested the >> reflexes on my legs and arms and I had no reflexes on my right side at >> all then my doc flashed this light into my eyes I am not sure what test >> she was doing but she told the neuro she would have to dialate my eyes. >> Neuro told me that ms and cns lupus are very serious and that I will >> need to get treated right away. That scared me. Sometimes I feel like >> a ticking time bomb. I was so upset when I left I got sick. After the >> neuro was done seeing me she told me to leave the room and that she >> needed to talk with my reg doc in private. The nurse walked me out of >> the room so I asked her do I wait in the lobby or go home or what she >> said she didn’t know so I just went home. I had alot of questions for >> my doctor and no one even told me when to get a follow up. >> And the lumbar puncture I am scared I am going to go to the hospital see >> the needle and say I am outta here and freak out. My anxiety level is >> so high right now, I am scared plumb to death. >> And if neuro is right and I have the cns lupus and I have to be on >> chemo, will I be able to go outside, shopping, will I loose all my hair. >> Will I have to stay in doors all the time so I don’t risk catching a >> virus or getting sick? My girls school plays, will I be able to go to >> them? These are some of the questions I have and wanted to ask my >> doctor. My reg doc is really cool, she is not a rhummey or a neuro just >> a reg md but to me she plays all three roles my rhummey does not consult >> with neuro and when he sends reports to my reg doc its a miracle. I >> also have this cognitive thing going on witch neuro suspects is from a >> cns lupus involvement. If anyone can please help or offer support >> please, let me know. Neuro also said I have to have neuro tests >> preformed and I need to see a therapist. Thanks in advance >> (((((((((hugs)))))) Melody
Response:
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— Andy For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/> For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/> For my other interests <URL: http://www.kitzbuhel.demon.co.uk/> 