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Re: To Barbra re: lupus, immune deficiencies etc. (Was re: test results)From: Barbra (anonymous@obgyn.net)Mon, 7 Jan 2002 03:21:56 -0600 (CST)
At Sun, 6 Jan 2002, Sonnet wrote: > >Barbara, I'd sure appreciate hearing more about what's going on with >your body and how this all ties in with your lupus. I know there have >been a few women on this board with lupus (I am personally convinced >that PCOS is at least in part auto-immune, which is why we all have such >trouble with lupus, Chrohns, some with MS, thyroid problems, etc.) > >I ask because I have had little to no immune system the past 3 years. I >have had glandular fever more than once as well as mono. (All the >Epstein Barr stuff.) I am sick just about constantly, I don't think I've >gone a full week in 3 years without having an infection of one kind or >another, even if it's just a little cold. Does this sound like what you >went through? What sort of problems did it eventually cause for you? How >would you have treated it differently if you could? > >Thanks! > >At Sun, 6 Jan 2002, Barbra wrote: >> >>I,too agree,that if I had been sent to the proper specialist when I >>first had complaints of PCOS..this lupus could have been avoided. >>My lupus was drug induced,as I always had glandular fevers,mono and a >>weakened immune system.The docs thought of me to be just a highly >>stressed woman and to seek the help of a shrink to help me deal with my >>so called 'hypochondriasis'. >>They said my symtpoms were puzzling and didn't fit in to their so called >>book of diseases. > >-- >Sonnet Fitzgerald, PCOS Association, Online Community Liaison. Email: sonnet@pcosupport.org > Hi Sonnet, Nice to hear from you again. I would be happy to tell you what is going on with my body....if only I knew myself. I will try and make this short and sweet,as I tend to ramble on endlessly about my chronic illness,to a point where it is getting to be an obsession. First,I want to answer your question on how I would have treated it....well,I would have first done RESEARCH on what symptoms that I was presenting with,to be certain that it was not all in my head.I then,would have seeked out a natural alternative,rather than resorting to the anti-depressants,for I was not depressed,but I was having alot of weakness in my legs.I would have brought in information and taken a stand with my doctor,I would not have been the passive women,thinking that all doctors were god and could wave their magic wand and make me better,I would have LISTENED TO MY BODY,NOT OTHER'S ADVICE! I really don't know where to begin and it is sometimes quite overwhelming for me to get into starting from scratch when all my symptoms began,but I will start with the immune system,as for that is what you had asked info on. I had mono(Ebsteen Bar Virus),first when I was five,then again at age ten,shortly after beginning my menses,then again at age 25.I constantly had bouts of terrible bronchitis and strep throat......hmmmm,,,maybe the heart thing there!Light bulb flash! After my mono at age 25,I became more tired and prone to every type of infection,of which I assumed was related to my job in Retail Management of a Furrier and then a Jewellery company.Always being around people,but aren't we all? That never bothered me,nor kept me away from my work.But,it did leave me extremely fatigued at times,where I could not manage much,and I would have heart palps from just washing a dish,or walking from one room to the next,despite I was physically fit and active.This never really got my attention,and I never seeked help of my MD at the time,till one day,I presented to emergenccy at age 30 with a heart beat of over 200,which I was told was an atrial fibrilation,and could be related to panic disorder.They said I was having a panic attack and then told me to go and see my doctor,so I did. He put me on clonazepam,for my anxiety,or so called anxiety.I just found out the last while,that I have a leaky heart valve,that is called Mitral Valve Prolapse that will present with symptoms of panic disorder.After the mono,I had always reoccuring tooth infections,,,,,they never put me on anti-biotics when they cleaned my teeth,and that is very serious with somone with MVP.It can lead to a leaking pericardium.....heart damage,etc.I didn't know..I went with the flow. SO, for several years,I took clonazepam for my anxiety,which was an actual heart problem. That masked my symptoms! I was still very active in my career and physically fit and all that stuff,but still would get strange things happening to me when I walked up stairs,or just doing something light.This always disturbed me,and I was always asked to come in yearly for a thyroid test(at the time,I didn't know why,but now know why),as I have all my medical records from the last decade and clearly showed thyroid abnormalities,but only a little high!You know those numbers where they say what is normal and what is slightly abnormal. Then in 1997,I was still employed and started to have strange sensations and weakness in my legs,especially my left leg.Went to my MD,and also was loosing weight despite that I was still eating the way that I had since I overcame being anorexic at age 11.He said I was loosing muscle mass and I was stressed and to go on stress leave,so I did. Till this day,I am still on STRESS LEAVE=)!!!!Anyhow,then my leg problems became more severe where I was loosing complete muscular control,falling and having semi-black outs.This is when I became really concerned,as did my MD at the time. I was suspected of having MS.I had to wait nine months to get an MRI done and proved normal brain function.I had a C spine up scan of my brain to rule out demyelinting disease. This is when my nightmare began.Even thru all the bouts of mono and minor infections,I was still able to work and lead a normal life...these things really didn't bother me much at all,for I thought it was just part of life and really never sent me into a mode where I was disabled.Although,I will admit that I had a diagnosis of Endometrosis at age 28...really heavy bleeding and I would go into a fetal position for two days in bed with large clots and that would incapaciated me.I was only given advil for the pain and it did help the pain,but certainly not the heavy bleeding and clotting,although,my periods were always quite regular for me(about every 24-25 days was normal).I did have spotting after intercourse all thruout my marriage and gyn 's said it was nothing to worry about.Had several miscarriages and then last one at age 35,in my fourth month...after that is when I really started having all the problems.Possibly a correlation,I do not know????? After the last miscarriage,I had another D&C and that corrected the heavy bleeding and clotting,although,now I seem to see a distinct pattern of when I started to become quite ill. Okay,now back to the leg thing. After MS was ruled out---I was told that I was a hypochondriac,as I kept insisting that there was definitely someting wrong with my legs,as they were weak and changed colors.Doctor stated that it was normal response to when one stands for the legs and feet to turn red...well then they turned blue and purple...hmmmmm! Off to see a shrink.....he just loved trying me on his little samples of pills,of which I was highly sensitive to,and he knew it,so he kept trying me on others and others,to no avail...only more side effects that were unbearable. Leg problems persisted.....bowel problems started,,,liver enzymes elevated(told from the meds),more weight loss,but water retention like I looked like toxemic pregnancy,heart palps,dry mouth,which never till this day has returned to normal,dehydration from my diabetes insipidus which cleared up on it's own,skin that was like a chamois,sweating bullets,,,hypothermic(I didn't know when I was cold or hot,could not tell temps),rashes all over the place like little reddd dots,as if from a red pen all over my body and especially on upper torso...cracked tongue,cracks on the sides of my lips..fever for two years,unrelenting,......more and more and more,,,,I will make your poor head spin.
>From my doctor I have learned that there is a strong relationship No on really knows what started the leg problem,but it had gotten so bad,that I was bed ridden for two years.UNDIAGNOSED! I sought the help of a chiropractor and physiotherapist,who both agreed that I had Sciatica and a misplaced hip from a prior accident and I must admit that after treatments,I did find relief for about a week or two. But still,I was on the pills for depression and feeling worse by the minute,but at the time,I had no diagnosis.One specialist said it was a SOMATIZATION DISORDER!YEAH RIGHT ON! Like I can make my legs turn purple and spit out frothy pink stuff in the middle of the night(heart going into failure,fluid in my lungs). I will end this now,as it can get mighty confusing for you,as it still is for me,but I will tell you that when I resorted to Homeopathic meds...I improved alot.My heart is better,I am not muscle atrophing any longer,I look better,my hair and skin has never looked so good,my bowel habits have improved alot,but still not normal. I have not had many colds or infections since on the meds from my homeo,,I also take alot of natural herbs and vitamins and minerals,and it has helped me,,that I am sure of,but everyone's body is different. I had a serious heart condition where it was reversable,,,I attribute that to the homeopathic medss,as nothing else helped me and the doctors still thought I was anorexic and starving myself to death.It was not that I was not eating...but i was not digesting!Tests proved that enzyme production had ceased. I am not housebound any longer from this illness,although,there are times where I go into a phase where I am soooo weak.Then it changes. I stop homeo meds for a while to give the body a break...that is when I run into more trouble.My homeopath gives me an immune booster.....I can tell you the name of the med,but it is homeopathic remdedy..it is chyawanaprash! Apparantly,now my white and red blood cell counts are normal,and so is my thyorid. Worst problem is the heart palps,swelling in my belly and legs,,sore,weak legs,exhaustion and a wired feeling all the time,as if I were climbing the walls,but I cannot.I try and do something that was so easy for me to do before,like take a daily shower,that poses a daily challenge for me. I do not know how I will feel from one day till the next. Also,my diagnosis for lupus at first was undifferentiated,as it so difficult to diagnose.Usually takes more than a decade,according to most women in the support group that I attend.Finally,my rhematoid factor came back showing positive for lupus and that was a relief in a way,for I knew that this was not all in my head,although,it has greatly affected my mental and emotion well being and my future and my marriage and finances.It is ruining my life. I will leave you with that for now,as I know it is alot to swallow,but if ever you feel the need to talk,please don't hesitate to email me privately. I feel some sense of security knowing that there are others out there that suffer daily too,and it is not as if miserly likes company,but we need support. I have found a tremendous amount of support from this group of women with a strong will to live a normal life. I NO LONGER FEEL AS IF I AM A FREAK,OR A NUTCASE! I am a woman who is suffering and the pains that I feel,(physically and mentally),are so debilitating for me. I send prayers your way! Talk soon,I hope. (((((((hugs)))))))))
-- Sincerely, Barbra Camara
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