Discussions By Condition: I cannot get a diagnosis.

Lupus? Bechet's? Fibro? All in my head?

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: tmcespn
  • April 8, 2011
  • 02:49 PM

I am at a loss. I was in a car accident in Aug 2009, in Mar 2010 (no idea if it has been part of the cause). I then had a diagnostic laparoscopy for pelvic pain related to the accident. Showed that I have pelvic varices & prolapsed everything. Since that operation I have had systemic illness with severe apthous ulcers, 35 lb weight loss, extreme fatigue, difficulty concentrating & left arm & shoulder pain, among other things. I was initially diagnosed with Bechets but then Hopkins said no (however, when they saw me the sores weren't present & they did no testing). The pain in my arm is unrelenting & probably at present my biggest, most constant problem. Although the ulcers can be severe & ended me up in the hospital for 4 days in Sept 2010 because I couldn't eat, speak or even drink. I have seen every specialist. Endocrinology, GI, Gyn, neuro, rheum, ortho, dentist, oral surgeon, infectious disease, vasculitis sp. They all come up with nothing. Tests normal, I have had excisional biopsy of lesions in mouth that came back negative for immune assays and was unspecific but like "lichen planus", they've been swabbed & are neg for viral like HSV (although that's what Hopkins said to treat for). I have been on acyclovir, colchicine but the only thing that helps is prednisone. The only tests that have been off are CRP & sed rate & high lymphocytes & eosinophils. But now I am getting really concerned because I swear my left supraclavicular lymph node is big & hard, & there are a couple of other lymph nodes that seem hard & swollen. It seems my lymph nodes have been swollen for a year, & the doctors do notice but have chalked it up to the mouth ulcers. I am so tired of looking like the crazy lady @ the dr office drawing attention to every odd little thing I notice but my docs are @ a loss too. The pain in my left arm & neck has the same S&S as thoracic outlet syndrome. My hand turns white, numb & tingles. But the pain is constant, my ortho gave me a cortisone injection to my shoulder & that has helped with numbness & tingling but not pain in arm, neck, scapula, & ribs. I am tired of everyone looking at me like I'm crazy because all tests are ok. *Even my short term disability was denied because they say everything shows up "normal" so I have had to stop working as a RN in the OR, a job that is very physically & mentally demanding, and give up a very good salary to stay home without any pay & try to figure this out & get well. I don't know what to do. I am 36 yrs old & too young to feel like an invalid, I have been out of work now for over 8 weeks and i have exhausted my FMLA *& I really think if I go back to work I'm going to have to look @ some other areas in nursing. I need some advice on what to do next. Right now I go to PT (pool therapy) & do my best to just keep moving & looking for answers. I would truly be grateful for any ideas or suggestions. Help! Please I am trying to attach a copy of a pic of the mouth sores but don't think I can do it from my iPhone, any suggestions?

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    Sauplefal 4 Replies Flag this Response
  • I am at a loss. I was in a car accident in Aug 2009, in Mar 2010 (no idea if it has been part of the cause). I then had a diagnostic laparoscopy for pelvic pain related to the accident. Showed that I have pelvic varices & prolapsed everything. Since that operation I have had systemic illness with severe apthous ulcers, 35 lb weight loss, extreme fatigue, difficulty concentrating & left arm & shoulder pain, among other things. Any and all of those symptoms could be ME. Can be brought on after a virus or even a shock. Not saying that's that it, but some of the symptom treatments I've tried out might help.Painful mouth ulcers can be relieved by chewing raspberry leaves (if you can't find dried ones, then raspberry fruit tea is fine. Chew it up, or at least mix with spittle and press against affected areas for as long as you can - a couple of minutes at least. Cauterises the ulcer as far as I can see and helps it heal.Also dietary changes can help stop ulcers forming: cut sugar out of your diet altogether if you can - Plamil do a great sugarfree milk chocolate if you can't get through Easter without. Also try a complete illimination diet to see if anything else troubles you: yeast, wheat, gluten, dairy, vinegar - do without for a month and try one a day and see what reaction you get. I did this a few years ago and it did wonders and now I can eat all those things again in moderation and am fine.
    jack63kids 5 Replies Flag this Response
  • jack63kids: I'm sorry, maybe I'm having a "foggy" moment but what's "ME"? I appreciate the advice & will take it into consideration.Thank you--tmc
    tmcespn 1 Replies Flag this Response
  • jack63kids: I'm sorry, maybe I'm having a "foggy" moment but what's "ME"? I appreciate the advice & will take it into consideration.Thank you--tmcOh no - stupid of me, my bad - I'm so used to posting on ME sites - which stands for Myalgic Encephalomyalgia. Some folks get Chronic Fatigue and ME mixed - ME has chronic fatigue as one of its many symptoms, so easily confused, but Chronic Fatigue can have many triggers and causes. Also has been known as Yuppie Flu, which makes me laugh as I'm not young, I'm not upwardly mobile and, thanks to ME, I'm no longer a professional!Some of us can trace it back to a nasty virus, others not. It feels like having a flu-type virus when it's bad so I'm never sure whether early bouts were an actual virus or the ME hitting bad. Mine came on worst when I was under a huge amount of stress changing jobs, commuting from London to Poole and moving house when two long time house sales fell through. I beleive I had whatever causes ME in me before that time, but that's when it floored me and I was unable to get out of bed for more than a couple of hours a day for 3 months at a time. Slept 18 hours out of 24 easily, could have done more.It goes hand in hand with Fibro Myalgia too - many of us have it in various grades, but diagnosis can depend on what the GP takes as your more 'promenant' symptoms, which will depend on how you are at the time of seeing them, and our symptoms tend to be very varyible.anyhooo - hope that helped.
    jack63kids 5 Replies Flag this Response
  • Dear Tmcespan,First of all it is not all in your head.I was diagnosed with fibromyalgia about10 years ago i believe it was.I have been being treated by a doctor at the pain clinic here close to where i live.It is hard to diagnose however most drs go by trigger points.Suppossedly there are 11.So far i only have 8 i believe.As for Lupus i am not too sure how that is diagnose but i should think that one can be found in blood work seeing its much worse than fibro.They say fibro can be caused by either intense stress in your life,car accidents,many other things too.It is considered an autoimmune disease.I had a car accidents almost maybe 25-30 years ago i am now 56 years of age.at the age of 24 i one day woke up with a hive like rash from head to toe.Then a couple of days later pain started and i don't mean light pain i mean excrutiating pain from head to toe.I was bed ridden for 6 months.I couldn't even hold any kind of a utensil in my hand.Went to the er when i couldn't figure out what to do.Would you believe i went through every kind of test there was.and nothing showed up and i do mean nothing.according to them it was in my head the pain and they just thought i ate something to cause the rash.would you believe they had the audacity to suggest i be admitted to the psych ward for evaluation.As time went on and speninding endless sleepless nights.i was convinced to see the police depts physchiatrist only cause the position my father had he was a judge of the county courts in mineola nyhe knew the police and everything so he set it up seeing as thats what the drs suggest.So anyway this measley psychiatrist gve me a battery of test and had blood work done and sent it to the labs in ucla california cause what he had suspected came back positive and they didn't at that time have the testing ingrdients for this.It turned out i was diagnosed with Epstein barr,which now a days is commonly known as cfs chronic fatique syndrome.So i was recommended to a rheumatist dr and he treated me first with vivodin which was the only thing that helped.Then as time went on he went to something lower darvocet so for about20 years i took darvocet.Then i ended up having to wean myself off of that because as time went on between my marriage breaking up and having trouble with my son at the time had to kick him out.I lived with my parents and took care of my mom and dad till they died and had to move out of the house when they dide,So my sisters convinced me to move to north carolina.I went to school there and got a cna 1 and 11 liscense,went to work as one all that time i was off the darvbocet and taking advil.But after about 3 or 4 years of cna work it made things worse again pain wise.Went to a number of drs and they didn't believe me,until Praise the Lord till i got remarried to my second husband here in nc and moved to another town and found a dr at the pain clinic that i am going to now.He is the one that diagnosed me with Fibromyalgia,cfs,ibs.And he and my regular physician helped me and now on disability and not working.So as you can see it isn't in my head and niether is it in yours.Its realIts just a matter of finding a dr that will believe in it.which it is getting to be known more widespread nowadays so,I pray that you will find a dr to help you.sincerelysavdbygrace
    savdbygrace 2 Replies Flag this Response
  • Im a ME patient of 14 years. Thou I agree with the previous poster that it could be ME, Im currently doubting it basing this on the info given in your post (ME causes A LOT of different symptoms and could cause all your symptoms except I havent heard of a hand going white in ME.. only white fingers due to Raynauds in ME). I'll explain further why I doubt ME (as i think with your symptoms you could end up risking a false ME diagnoses if the doctor isnt very familiar with ME). There are quite a few symptoms in ME which are usual to have in the illness... you just dont have those symptoms (unless you didnt mention them here.. which would make it hard for people to say what you have). I'll post some of the normal ME symptoms which point to its probably not ME due to the things you dont have (the percentages are based on studies done of percentage of that symptom in ME patients) Fatigue, often accompanied by nonrestorative sleep, generally worsened by exertion: 95-100% Nausea: 60-90% Irritable bowel syndrome (diarrhea, nausea, gas, abdominal pain): 50-90% Chronic sore throat: 50-90% Fevers/chills/sweats/feeling hot often: 60-95% Low blood pressure: 86% Sleep disorder/disturbance (insomnia, unrestorative sleep, unusual nightmares): 65-100% Photosensitivity: 65-90% Disequilibrium, spatial disorientation, dizziness, vertigo: 60-90% Seizure-like episodes: 70%** (seizures: 2%) Anxiety: 70-90% Mood swings, excessive irritability, overreaction: 70-90% ............ weight loss can occur in ME but only 20-30% of ME patients get loss. (50-70% of ME patients get weight gain). Swollen lymph nodes do commonly occur in ME. Your symptoms thou could well be fibromyalgia thou fibro doesnt cause mouth ulcers, weight loss and swollen lymph nodes, Fibromyalgia commonly occurs coexisting with other illnesses so fibro is a likely diagnoses as part of your issue. Symptoms in Fibromyalgia are fatigue, concentration issues (in the fibro communities they call it Fibro fog), pain, tingling There are "tender points" in Fibromyalgia in which can aid a diagnoses if you do have fibro. http://www.prohealth.com/fibromyalgia/basics.cfm?anchorid=24&#-24....... Due to your mouth ulcers and all the other symptoms you have, I suggest a second opinion with someone who specialists in Bechets if possible. Doctors are unfortunately wrong with things. ...... Be aware that if you cant possibly work.. it is possible still to get onto Disablity with unknown conditions. I doubt very much its in your head.. so keep on looking for the full answers. Seeing someone who specialises in fibro would be a good idea cause if you have it, you will then know to look out for some illness which coexists with it.
    taniaaust1 2267 Replies Flag this Response
  • Im a ME patient of 14 years. Thou I agree with the previous poster that it could be ME, Im currently doubting it basing this on the info given in your post (ME causes A LOT of different symptoms and could cause all your symptoms except I havent heard of a hand going white in ME.. only white fingers due to Raynauds in ME). ...Due to your mouth ulcers and all the other symptoms you have, I suggest a second opinion with someone who specialists in Bechets if possible. Doctors are unfortunately wrong with things.tania,Thanks, that's much more useful on ME and Fibro Myalgia than I was - good list, I'd not seen the percentages before, that's really helpful. I was more intent on the individual symptoms that I've had some success in treating. I get painful mouth ulcers - or rather I did before dietery changes - and treated the more painful side of them with raspberry leaves. I was stunned how it sorted out the pain and lessened them.Generally,I don't think I'm alone in getting ulcers - and not just in my mouth - with ME and it's not necessarily indicative of Bechets, though could be, it's a definite symptom. I'd definitely check that out though with a specialist and ask the Bechets Soc for some guidance, I've heard they are very good and could help pointing you towards a diagnosis.Good luck!Jack
    jack63kids 5 Replies Flag this Response
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