Question:
Hi, I was wondering if anyone who wants to would like to share their initial symptoms. The symptoms they had when they first starting getting sick. I’m sure there are people out there besides myself who would be interested. Thanks, Maureen
Response:
Fatigue from hell. I was working 4 days a week. Nursing is a little demanding but this was something else. I would ache and hurt all over. Barely able to do anything when I got off work. I would hit the recliner for awhile just to try and regroup. Then I would konk out and when I would wake up, I felt like I could not move. I mean I hurt. Then when I finally did get to sleep after tossing and turning due to discomfort, well Holy moly, I could not wake up. Felt like I was run over by an 18 wheeler and left as Road Kill LOL. This went on for months and months. Saw rheumy too after a positive ANA. I had episode in there of a hospitalization of fever, for which they found a small rash just above my tail bone. "diagnosis" shingles. so the temps continued. rhemy says awe YOU got arthritis. Leave to adapt. Adapt I tried but it got worse and Well this was just the beginning in 93 of "what ever happened to janers Rn. DUH hugs to all janers
Response:
Severe joint pain. All of a sudden, with no warning whatsoever. I remember I woke up in the morning and felt like every joint in my body – from my jaw to my big toes – was on fire. .:* feel smart again <a href="http://www.mentalfloss.com">mental floss</a>
Response:
"Maureen" <BlueEyedMoeNOS…@telus.net> wrote in message <snip>
wondering if anyone who wants to would like to share their > initial symptoms. </snip>
First symptoms ever were regular monthlies (no not periods! lol, fooled you!) …. monthly cystitis, in fact hemmoragic cystitis.. and it didn’t quit till 4 years later after progressing to involving my kidneys with fevers of 105 degrees for 4-5 days a month, each time involving a hospital stay with batteries of labs and xray tests. BTW that is how I got sent to the Mayo clinic… the doctors in Vancouver … after a special conference revolving around me!!… couldn’t come to a conclusion or Dx and sent me onward to the _Pros_ (ha ha choke and gag) They too didn’t want to dx me cause of age and sent a memo in privacy to my spec. with their diagnosis of my sle in its’ early stages of renal involvment as a young woman -l8 years old- who shouldn’t be told about it as the prognosis was ‘grim’) All that and no answer _directly_ … my parents were furious as they had paid the $$$full$$$ shot or close to! — from Shelagh Co-ordinator Of Valley-Lupus – Invisible in Plain Sight http://www3.telus.net/valleylupus/index.html Subgroup of BC Lupus Society and Lupus Canada Email: valleylu…@telus.net
Response:
- Hide quoted text — Show quoted text -Shelagh wrote: > "Maureen" <BlueEyedMoeNOS…@telus.net> wrote in message <snip> > wondering if anyone who wants to would like to share their >>initial symptoms. </snip> > First symptoms ever were regular monthlies (no not periods! lol, fooled > you!) > …. monthly cystitis, in fact hemmoragic cystitis.. and it didn’t quit > till 4 years later after progressing to involving my kidneys with fevers > of 105 degrees for 4-5 days a month, each time involving a hospital stay > with batteries of labs and xray tests. > BTW that is how I got sent to the Mayo clinic… the doctors in > Vancouver … after a special conference revolving around me!!… > couldn’t come to a conclusion or Dx and sent me onward to the _Pros_ (ha > ha choke and gag) > They too didn’t want to dx me cause of age and sent a memo in privacy to > my spec. with their diagnosis of my sle in its’ early stages of renal > involvment as a young woman -l8 years old- who shouldn’t be told about > it as the prognosis was ‘grim’) All that and no answer _directly_ … my > parents were furious as they had paid the $$$full$$$ shot or close to! > — > from Shelagh > Co-ordinator Of > Valley-Lupus – Invisible in Plain Sight > http://www3.telus.net/valleylupus/index.html > Subgroup of BC Lupus Society and Lupus Canada > Email: valleylu…@telus.net
Shelagh, I am thinking about taking a trip to Mayo in Minnesota. When did you go? I don’t want to waste my time if it’s just the same crap as I am getting here. (It’s all in your head… Low positives aren’t worth my time, etc etc.) Isn’t insurance supposed to cover it? Sorry I’m so inquisitive. I just am still deciding if it’s worth it (I’m coming all the way from NY!) TIA -Sharon — Clear your mind, relax and float downstream. To email me, remove NOSPAM
Response:
<snip>"SPerloff" <SPerl…@NOSPAMyahoo.com> wrote in message > I am
thinking about taking a trip to Mayo in Minnesota. When did you > go? I don’t want to waste my time if it’s just the same crap as I am > getting here. > </snip>
Hi Sharon, I was referred there at age 18 cause of all the renal involvments and they couldn’t figure out the whys and hows and come to any firm conclusions. I was pretty ignorant of ‘health’ anyway except to know that I wasn’t feeling as good as my 6 sisters and it was so strange to be so different always. The mayo is like a huge factory and you are a little cog put through a processing mill of doctors who poke and prod and question and test and at the end you have a big consultation with all the specialists reports and get your answers / diagnosis or NOT. They are very cold and professional but supposedly the best in the world (at least at the time I was sent) but I was not impressed and they didn’t even want to label me with lupus cause I was ’so young’ and ‘too young’ to have a prognosis of 5 years to live (which was the going rate 30 odd years ago!!) So they gave my spec. at home the ‘heads up’ on what they found and watched me like a hawk over the next while… of course it was too late for my daughter, my spine and my heart valve (and raynauds and sjogrens)…. by the time I was let in on the dx (10 years later!!!) … so as you can imagine I am not high on the place and wouldn’t recommend it to anyone but at the same time…. if you are really stuck where else can you go?! Good luck with your decision.. it will be a tough one to make … from NY too! I travelled all the way from BC even then and it was 3 jets, one to Seattle, one to somewhere (st. Paul?) in Minnesota, and then a smaller one into Rochester where the clinic was. I don’t envy you this decision and I am so sorry to be so negative. Damned if you do and damned if you don’t… ?! from Shelagh Co-ordinator Of Valley-Lupus – Invisible in Plain Sight http://www3.telus.net/valleylupus/index.html Subgroup of BC Lupus Society and Lupus Canada Email: valleylu…@telus.net
Response:
Here’s my story: In 1990 I had low platelets (thrombocytopenia), so my bone marrow was tested and it was found that my body produced the platelets but my immune system was destroying them. I was tested for lupus at that time but didn’t meet enough criteria for a diagnosis. I was treated with high-dose prednisone and got well in time. Then in 1996 I developed the typical butterfly rash. Hubby also noticed I had been napping more than usual around this time. I had learned about lupus when I had the bleeding disorder and the symptoms seemed to fit, so I saw a family practice doc, was referred to a rheumie, and got diagnosed. I’m lucky that it was all pretty cut-and-dried and that the docs listened to me when I told them I thought it was lupus. I feel so bad when I read the stories of people who suffer for ages without treatment until they finally get a diagnosis. Karena ke…@aol.com
Response:
First symptoms were hair loss, mild fatigue, and bruising (black and blue marks on legs). Good luck. JBAB
Response:
"SPerloff" <SPerl…@NOSPAMyahoo.com> wrote in message: It was nice to
feel a bit like the old me again. It’s > been so long. I hope the Mayo thing works out,
</snip> Doctors just don’t seem to get it unless they have seen it, done it or been there themselves! With a lupus dx that is a tough one because of the obvious. I really hope you get some answers if you go to the Mayo… you can’t be any worse off by going that is for sure! Good luck to you with your decision and I really hope you keep on feeling better!! ((hugs to you)) from Shelagh Co-ordinator Of Valley Lupus – Invisible in Plain Sight http://www3.telus.net/valleylupus/index.html Subgroup of BC Lupus Society and Lupus Canada Email: valleylu…@telus.net
Response:
In article <0Gsj9.25757$EA.980…@news0.telusplanet.net>, "Maureen" <BlueEyedMoeNOS…@telus.net> wrote:
First symptom was pericarditas that put me in the hospital. While there the fever started and incredible fatigue. Since we had just come back from a business trip to Grenada they thought it was some kind of tropical disease. It still took them 4 years to come up with diagnoses. ruth – Hide quoted text — Show quoted text -> Hi, > I was wondering if anyone who wants to would like to share their > initial symptoms. The symptoms they had when they first starting > getting sick. I’m sure there are people out there besides myself > who would be interested. > Thanks, > Maureen
Response:
- Hide quoted text — Show quoted text -Shelagh wrote: > <snip>"SPerloff" <SPerl…@NOSPAMyahoo.com> wrote in message > I am > thinking about taking a trip to Mayo in Minnesota. When did you >>go? I don’t want to waste my time if it’s just the same crap as I am >>getting here. > </snip> > Hi Sharon, > I was referred there at age 18 cause of all the renal involvments and > they couldn’t figure out the whys and hows and come to any firm > conclusions. I was pretty ignorant of ‘health’ anyway except to know > that I wasn’t feeling as good as my 6 sisters and it was so strange to > be so different always. The mayo is like a huge factory and you are a > little cog put through a processing mill of doctors who poke and prod > and question and test and at the end you have a big consultation with > all the specialists reports and get your answers / diagnosis or NOT. > They are very cold and professional but supposedly the best in the world > (at least at the time I was sent) but I was not impressed and they > didn’t even want to label me with lupus cause I was ’so young’ and ‘too > young’ to have a prognosis of 5 years to live (which was the going rate > 30 odd years ago!!) > So they gave my spec. at home the ‘heads up’ on what they found and > watched me like a hawk over the next while… of course it was too late > for my daughter, my spine and my heart valve (and raynauds and > sjogrens)…. by the time I was let in on the dx (10 years later!!!) … > so as you can imagine I am not high on the place and wouldn’t recommend > it to anyone but at the same time…. if you are really stuck where else > can you go?! > Good luck with your decision.. it will be a tough one to make … from > NY too! > I travelled all the way from BC even then and it was 3 jets, one to > Seattle, one to somewhere (st. Paul?) in Minnesota, and then a smaller > one into Rochester where the clinic was. > I don’t envy you this decision and I am so sorry to be so negative. > Damned if you do and damned if you don’t… ?! > from Shelagh > Co-ordinator Of > Valley-Lupus – Invisible in Plain Sight > http://www3.telus.net/valleylupus/index.html > Subgroup of BC Lupus Society and Lupus Canada > Email: valleylu…@telus.net
Thanks for all the info, Shelagh. I’m so sorry your experience wasn’t a good one. And the ‘cold’ docs are the pits! Just what we need when feeling so icky (and scared.) I do agree that I’m damned either way I go. So maybe it’s worth a shot. My fever was down today. I’m so happy! Woke up with a 97.7f, and came home from school tonight with a 98.7f. Usually, after school it’s 100f. But I still feel horrid. Had a brief moment of mental clarity though (just a bit less muddy, may be more accurate.) It was nice to feel a bit like the old me again. It’s been so long. I hope the Mayo thing works out, or maybe I’ll finally run completely down, and end up in the er, where my pcp seems to think I should be if there’s anything wrong with me. (In other words, he thinks there’s nothing wrong with me because I haven’t had an er experience to go along with all the symptoms.) Thanks again. :) -Sharon — Clear your mind, relax and float downstream. To email me, remove NOSPAM
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