Discussions By Condition: I cannot get a diagnosis.

Help, numerous, vague symptoms x2 years...

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: 23ahm23
  • June 1, 2008
  • 03:13 PM

OK, here's the deal...I'm a 23 year old female. I felt myself to be in generally good shape and health prior to all this. I'm 5'5", 135 pounds. I've been suffering the following symptoms...
- Low grade fever (99-100), usually at night, approximately 3-4 days out of the week.
- Left sided abdominal pain, generally running along the whole side of the abdomen, several times per week, usually at night. I have had CTs and Ultrasounds which were grossly normal save a few lymph nodes. Also had a HIDA scan which showed "sludge" in my gallbladder, but no stones. Doctor's said that they would not take it out because the ejection fraction was not low enough.
- Night sweats to the point that I have to change clothing in the middle of the night. I've tried hot and cold showers before bed, not drinking anything warm before bed, windows open and closed, fans on and off, less and more blankets, nothing helps. I have had numerous blood tests and they all seem to come back just a little bit abnormal. My LH and FSH are extremely low (less than 0.1). My CRP and Sed rate are intermittently high, IGG and EBV were positive that I had had it at one time, but unable to tell if I have it currently. The doctors have thrown these to the side saying this is just normal for me.
- Coldness, numbness and pain in hands and feet ( I was diagnosed with Raynaud's when I was 15).
- Hypertension (I was diagnosed with this also when I was 15 and put on medication for it...after about a year, my Blood pressure went back to normal and I was allowed to come off of the medication. About a year ago with a routine check, my blood pressure was 160/115 so I was put back on medication for this)
- Palpitations. I wore a 30 day holter monitor which showed numerous PVCs and bigeminy with a couple episodes of trigeminy. Also my pulse was shown to be in the 160s at some point in about 1/2 the days I wore the monitor
- A new heart murmur (unknown type or grade). I did an echocardiogram which came back normal.
- Shortness of breath and chest pressure (this has only been going on about a month) accompanied with oxygen saturations averaging about 90%. I had PFTs done which showed both obstructive and restrictive lung disease. The thing is, my oxygen has always been at 100% ( I work at a clinic and check my vitals every 2 weeks to monitor my Blood pressure). Also a chest x-ray showed moderate inflammation in my lungs.
- 2 large lymph nodes in my neck that are not changing (getting bigger OR smaller). I've had a bone marrow biopsy which came back normal, so they said lymphoma could be ruled out.
- Edema in both hands and feet. This is also new within the past 2 months. I have a very low salt intake, hoping I will be able to bring my blood pressure down naturally, so i don't think that's the problem.
- Fatigue
- Dizziness. Worse when i move at all, better if I hold on to something and close my eyes.
- Skin sensitivity. I get all over rashes with any kind of heat or coldness. Every night getting out of the shower I have a red blotchy rash covering my body, also with any sunlight, or cold exposure...(could Raynaud's effect all over body??)
- Here's some personal and family history (sorry this is so long, but i want all the information there in case it will jar ANYONE to think of what this could be)
-Father - melanoma, grandpa - gum cancer, grandma - lung cancer, grandma - lupus and ovarian cancer, mom's entire side - htn,
- Also I have chronically abnormal pap smears (since 15I have only had 3 normal pap smears). They show up as CIN 1-2 usually. I have had numerous colposcopys and one LEEP.

Ugh, can someone PLEASE help me, I'm getting desperate!!

Reply Flag this Discussion

14 Replies:

  • do u have any amalgam fillings?if yes find a pro dentist to guide u
    Anonymous 42789 Replies Flag this Response
  • Do you know lyme disease??Im sorry but i'm sure you have it.Even the things you have in your neck is caused by a co infection of lyme, bartonella...I had this on my legs.If you don't remember a tick, it's normal, only 30% do.Listen, the problem with lyme right now is that there is a lot of actions taken because the infectious doctor dont want to trat lyme and diagnose it properly.Look at the action of the attorney general of Connecticut against them: http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284Things will change, but now, if you want to be treated properly and not being said you're crazy or psychosomatic, you must see an LLMD: specialized doctor for lyme disease. He will test you with the good tests and will give you the good treatment, you are suffering for sure of lyme, and co infections that gives you this chills: Babesia.I know it's hard to believe that a tick can cause it, but it is. If you want to have support, see, and ask for help for a doctor, go join this forum, they will help you! http://flash.lymenet.org/scripts/ultimatebb.cgi?For infos on the symptoms: www.canlyme.com ,click symtoms.You can not have everything, lyme came slowly, but you have enough to say it's lyme disease. the good news is you will be treated and go out of this.You just need someone to support you, help you with meoney for doctor and tests, and after your meds will probably be covered...Fannie
    Fannou 111 Replies Flag this Response
  • - Hypertension (I was diagnosed with this also when I was 15 and put on medication for it...after about a year, my Blood pressure went back to normal and I was allowed to come off of the medication. About a year ago with a routine check, my blood pressure was 160/115 so I was put back on medication for this) Your age and your BP history is interesting. Im actually wondering if maybe you dont have high BP at all but rather have "white coat hypertension". Have you ever had 24 hr BP monitoring to see if it drops to normal levels or while sleeping? Where you getting high BP at other times other than at high stress times or at doctors visits? If not.. i do think you should have 24 hr monitoring done... to find out for sure if it is high BP rather than white coat hypertension. With all your issues too.. it is possible that you have a sympathetic nervous system (SNS) dysfunction going on (this is a problem which most doctors are not familiar with.. one needs a specialist for this). That could also affect BP and put it all over the place.. and also affect heart rate. Another reason why 24 hr BP monitoring would be a good idea. I myself have a SNS dysfunction.. but without the 24 hr monitoring which shows mine also goes low, doctors would of thought i had hypertension as my BP goes up to 167/138 at times and commonly is showing up as much higher than yours)................................ If in a place where there is lymes or if you could of picked that up.. I too think you should have some good lymes testing done................ are your symptoms worst after you have exercised??
    taniaaust1 2267 Replies Flag this Response
  • To tell you the truth I don't exercise very much at all. But the shortness of breath definately gets worse after any kind of activities. I haven't worn a 24-hour monitor for my blood pressure before, just one for a month to monitor my heartbeat. I'm getting extremely frustrated, because the doctors seemed to have just given up. I'm also running out of funds, the medical bills are starting to reallly stack up...I don't know what to do next
    23ahm23 1 Replies Flag this Response
  • Thyroid problem.....very common and doctors forget to check...just blood work...FT3, FT4, TSH (NOT JUST TSH BUT ALL TESTS!!!!) and antibodies for the autoimmune disease of the thryoid...You seem to have many symptoms so I strongy suggest you research this common problem...Mary Shomon's site at About.com is very good...she herself a thryoid patient...you may have pituitary involvement....thryoid problems can get complicated sometimes....please check out that site and see if thryoid problems may fit your description. Se a specialist called and Endocrinologist. The fact that LH and FSH are low also make me wonder about pituitary involvement.....Pituitary is the master gland and a small tumor (many people have then but they do not cause problems but in your case maybe do....) ....in this case you need to see an doctor who specializes in pituitary problems....probably neurology or neuroendocrinology....or something similar. Raynauds...isn't that an autoimmune disease? I know you may not want to hear this, but those with one autoimmune disease are more likely to develop another than those with none (I have autoimmune Graves Disease so I am in the same boat!)....so you may want to check for other autoimmune diseases as well which can cause a lot of vague symptoms....actually Mary Shomon wrote a really good book about all the autoimmune diseases and their symptoms....may be worth check up on other autoimmune disease as well ...and you do have autoimmune diseases in your family (lupus for one)..... Those adbnornal pap smears are a concern and if I were you I would want to get that under control....ovarian cancer in the family is fairly scary....my cousin just passed away from this...her grandmother on her father's side had it.....this is meant to scare you...don't mess around with that....see good Gynecologic Oncologist . Joan
    Joan5555 316 Replies Flag this Response
  • . My LH and FSH are extremely low (less than 0.1). ! While researching some of my new recent additional issues, i just came across a quote at another site on low LH and FSH so thought i'd came here and post it.. but i see another has beat me to saying something about it :) Conventional wisdom tells us that we’re born with a finite number of follicles in our ovaries that grow into eggs with the help of follicle stimulating hormone (FSH) and lutenizing hormone (LH), and when the eggs run out, we are in menopause. One of the ways we can gauge where our bodies are in this process is to test FSH and LH levels. When they are too low for a woman younger than 40, she may have a pituitary or hypothalamic issue. quote taken from http://www.womentowomen.com/sexualityandfertility/pof.aspx................ Why i asked you if your were worst after exercise (I was trying to find out if your whole "symptom complex" was worst after exercise).. is that i was wondering if you could have something like chronic fatigue syndrome (thou it's not normal to have proper hypertension with it.. from what you've said thou.. i dont think the testing you had was enough to say you have true hypertension). If it was something like CFS.. CFS affects the hypothalumus, pituatory and adrenal pathway. .. and in CFS your most of your symptoms very are common in it... (ive had swollen hands with it at times) http://wwcoco.com/cfids/bernesx.html Im not sure if this is your issue or not thou... due to if you do have proper high BP which would then make CFS unlikely ..and that oxygen satuation level you had, as far as i know..that dont usually show up on those routine tests??. (thou there IS oxygen issues in CFS..but it's the ultilizism and toxicity of it.. CFS is a low oxygen state.. We are in a lower oxygen state after exercise or excertion)...
    taniaaust1 2267 Replies Flag this Response
  • Have you ever been diagnosed with anxiety? Most of those symptoms can be the result of anxiety.
    Anonymous 42789 Replies Flag this Response
  • OK, here's the deal...I'm a 23 year old female. I felt myself to be in generally good shape and health prior to all this. I'm 5'5", 135 pounds. I've been suffering the following symptoms...- Low grade fever (99-100), usually at night, approximately 3-4 days out of the week.- Left sided abdominal pain, generally running along the whole side of the abdomen, several times per week, usually at night. I have had CTs and Ultrasounds which were grossly normal save a few lymph nodes. Also had a HIDA scan which showed "sludge" in my gallbladder, but no stones. Doctor's said that they would not take it out because the ejection fraction was not low enough.- Night sweats to the point that I have to change clothing in the middle of the night. I've tried hot and cold showers before bed, not drinking anything warm before bed, windows open and closed, fans on and off, less and more blankets, nothing helps. I have had numerous blood tests and they all seem to come back just a little bit abnormal. My LH and FSH are extremely low (less than 0.1). My CRP and Sed rate are intermittently high, IGG and EBV were positive that I had had it at one time, but unable to tell if I have it currently. The doctors have thrown these to the side saying this is just normal for me.- Coldness, numbness and pain in hands and feet ( I was diagnosed with Raynaud's when I was 15). - Hypertension (I was diagnosed with this also when I was 15 and put on medication for it...after about a year, my Blood pressure went back to normal and I was allowed to come off of the medication. About a year ago with a routine check, my blood pressure was 160/115 so I was put back on medication for this)- Palpitations. I wore a 30 day holter monitor which showed numerous PVCs and bigeminy with a couple episodes of trigeminy. Also my pulse was shown to be in the 160s at some point in about 1/2 the days I wore the monitor- A new heart murmur (unknown type or grade). I did an echocardiogram which came back normal.- Shortness of breath and chest pressure (this has only been going on about a month) accompanied with oxygen saturations averaging about 90%. I had PFTs done which showed both obstructive and restrictive lung disease. The thing is, my oxygen has always been at 100% ( I work at a clinic and check my vitals every 2 weeks to monitor my Blood pressure). Also a chest x-ray showed moderate inflammation in my lungs.- 2 large lymph nodes in my neck that are not changing (getting bigger OR smaller). I've had a bone marrow biopsy which came back normal, so they said lymphoma could be ruled out.- Edema in both hands and feet. This is also new within the past 2 months. I have a very low salt intake, hoping I will be able to bring my blood pressure down naturally, so i don't think that's the problem.- Fatigue- Dizziness. Worse when i move at all, better if I hold on to something and close my eyes.- Skin sensitivity. I get all over rashes with any kind of heat or coldness. Every night getting out of the shower I have a red blotchy rash covering my body, also with any sunlight, or cold exposure...(could Raynaud's effect all over body??)- Here's some personal and family history (sorry this is so long, but i want all the information there in case it will jar ANYONE to think of what this could be)-Father - melanoma, grandpa - gum cancer, grandma - lung cancer, grandma - lupus and ovarian cancer, mom's entire side - htn, - Also I have chronically abnormal pap smears (since 15I have only had 3 normal pap smears). They show up as CIN 1-2 usually. I have had numerous colposcopys and one LEEP. Ugh, can someone PLEASE help me, I'm getting desperate!!Have the doctor check you for TB.I had shortness of breath,fatigue,bad nights sweats,dry cough,pain in my back and side,weight loss.It took me at least 12 months and 3 doctors before they did a TB test and started treatment which fixed me right up.Good luck
    Anonymous 42789 Replies Flag this Response
  • Oh my goodness!! your symptoms sound ALOT like mine..... you MUST see a rhuematologist!! i have something similar to lupus called adult onset Still's disease. i have the fevers (l0ow grade), the night sweats, rash due to sensitivity, hot , and cold...... i could go on. i also DO NOT have a positive rhuematoid factor but i have HIGH sed rate. if you need anymore info or have any questions I would be happy to help...my email is olive76@sbcglobal.net....
    olive76 2 Replies Flag this Response
  • There was a Mystery Diagnosis story that sounds very similar to yours on about a young woman who runs marathons. I can't remember what the answer's name was but it turned out to be a genetic disorder that could be managed nutritionally. She suffered for decades before figuring it out. Maybe you can get someone with a DVR to record the shows for a while until you find it or you can e-mail Discovery Health for a transcript. Sorry I can' t remember- I'm having cognitive issues-:rolleyes:. Hope that helps.
    dizzy lizzie 192 Replies Flag this Response
  • Have you ever been diagnosed with anxiety? Most of those symptoms can be the result of anxiety. Too many people get their health issues put down to anxiety or depression esp when doctors cant work out what is wrong. Anxiety doesnt cause ones hand and feet to swell nor will it cause night sweats. (i dont know whether anxiety would possibly affect LH and FSH either).
    taniaaust1 2267 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • I have VERY similar symptoms. I am only 22 years old and have been sick and getting worse for 2 years now. They think it's Lyme but I've been on anti-biotics for 9 months now and have little if any improvement. This is the site of my symptoms. (http://www.mdjunction.com/forums/lyme-disease-support-forums/introductions-personal-stories/7363-desperate-for-an-answerplease-read) I am desperate for answers as well so please respond if you have some of the same! Feel better...Michele
    Michele611 8 Replies Flag this Response
  • OK. Lyme disease is pretty low down the list. I would think about other things first.Your high BP is unusual. Do you have a monitor at home you could use? It may be white coat syndrome, and monitoring at home would help us get a realistic result. You do seem like an anxious person (no offence), and it is possible that many of your symptoms relate to high levels of anxiety/stress. Have you tried relaxation therapy (read about it on the net, you can do it for yourself). Thai Chi/yoga might help you relax too. Failing that, your doctor might be able to refer you for some psychiatric help with regards to managing your stress/anxiety levels.However, you mention that you work in a lung clinic. How much TB are you exposed to? Have you had a BCG vaccine? When was the last time you had your TB status checked? TB can cause night sweats and lymphadenopathy and might impact on your lung function. It is possible, although unlikely, that you have an endocrine tumour of the lung, although surely this would have been picked up by now (sorry if it sounds scary, I think it's unlikely, but I'm just being complete).One very rare cause of high BP in a young person is a phaeochromocytoma, although again, they should have screened for this. Look it up on the net for more info.Hope this helps, good luck!
    happyprince123 33 Replies Flag this Response
  • http://forums.wrongdiagnosis.com/showthread.php?t=29657...Please visit my story. I am a 22yr old female with Lyme and very similar symptoms. Contact me! :)
    Michele611 8 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.