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jmf860 11-07-2008 10:37 AM

25 yr old female, "newbie" unexplained health problems
 
Hi everyone, my name is Jenn and im new to this site. Ive been having quite a bit of various health problems for the past 2 YEARS now and still.. no real real answers or diagnosis. Have been tested it seems for everything & anything, blood tests or bigger tests. mri, ct scans, xrays. u name it. It all started about 2 years ago i started takin bc pills, progesterone only bc pills because i used to have very bad migraine problems. so i took those for about a year straight & i seemed to be fine on them, but decided to stop takin them to see if my migraines would improve any being off of them because they seemd to b more frequent after i started b/c. so i stopped the bc pills all together. migrianes did subside after awhile of being off b/c pills but along came all my other problems. so i stopped taking bc pills, not to long after i got mono. so i was down & out from that for a good 3 months, i really dont even remember those 3 monthes of my life really. i slept through most. so i got over that and a few monthes later, i felt the same way again. re occurant mono usually doesnt happen but it either did or i had chronic fatigue syndrome or something cuz i was then downanother 2 monthes. so after i got over that, its now been one thing after the other.
now my symptoms are and have been over the past year or so, nauseau (almost everyday) not throwing up, i never throw up, just very nauscious. back pain here & there, right flank pain, left arm pain,numb tingling feeling, also in my left foot (not everyday, speradically) the feeling as if someone is sqeezing my stomach or back and wont let go, like a stiff dont want to move AT ALL feeling and pain, unfocused quite often, very fatigued, heart palpitations at times, re-current UTI's, (seen a uroligist, on medicine for that, well for when i have sex with my bf i have to take it). hip clicks everytime i raise it all the way up, then bring it back down, or during sex once in awhile. If i dance to much for like 10 minutes straight of "all out dancing" i feel REALLY nauscious like im goin gto throw up and have to stop dancing and drink alot of water and cool down. i sweat easily & now my latest thing to add to the list is ringing in the ears. right side more so then the other. thats been goin on for about a month now, driving me nuts! but have seen the ENT doctor, got an mri done of the brain last week, but didnt use contrast so now if its still bothering me in 2more monthesi have to go back and have another MRI done WITH contrast this time.
and i jus deal with it all, i dont no what to do anymore! :( i dont like taking pills, i would rather try or have everything all natural. i dont like pain medicine, nothing besides ibuprofen or something. the only thing i take is meclizine for my nauseau. ive had so much blood work done this past year, been to the E.R so many times, and stil nothing. my doctor says, u either have something we havent figured out yet in the medical world or dont have the resources to test it or u might have to figure it out on ur own or go to school to be a doctor and hopefully u might be able to cure yourself. :mad: its just aggravating when she tells me that. i do all i can, search this, search that, test this, test that... and NOTHING! besides they think maybe i have endometriosis?? so i go back to my obgyn on nov. 18th and talk to him about having the laproscopy procedure done. and i go back to my doctors on monday to get the results of my hormone levels & cortisol levels. (which ive been wanting done for a very long time now). and if the results of this come back "normal", then i dont no what i do from here, (besides the laproscopy). i cant give up because if i dont try noone else will, but im @ my wicks end & need some help & some answers. and yes ive been tested for lime, and my thyroid is fine, and all my blood counts seem normal, ive been tested for even crazy infectious disease type things as well for the "why not" theory and still nothing. scheduled to see the rheaumatologist in december.
Any thoughts or help would be appreciated!!!

bethsheba 11-07-2008 01:55 PM

Re: 25 yr old female, "newbie" unexplained health problems
 
Suggest you do some reading about lyme disease...whenever "nothing" shows up on tests, it should be considered. Keep in mind that most docs don't have the knowledge or the skills to diagnose this condition so seeing a Lyme Literate Medical Doctor is critical...(most tests are not sophisticated enough to pick up the bacteria at all stages of development.)

You live in a high risk state for Lyme.

shisslak 11-07-2008 05:56 PM

Re: 25 yr old female, "newbie" unexplained health problems
 
jmf860

Have you tried seeing a rheumotologist. I have been referred to one by my cardiologist. She mentioned that you do not have to have all the symptoms for an autoimmune problem but you may have some. A good rheumotologist will be able to test you for all kinds of strange illnesses including Lyme. Do some research on the doctors in your area. I notice that you live in CT which is where Lyme disease is said to have been discovered. Check out the teaching hospitals in the area. (University of Ct has a medical center). If you live in Southern CT by the New York border, than research some doctors in the New York City area.

I can feel your frustration because I went through two years of testing and more testing for my weakness and fatique and heart palpations. Part of my problem was I was taking the drug tamoxafin. Once I stopped taking this medication, some of my symptoms resolved. I have still have to make my appointment with the rheumotologist, however, recent family health problems have consumed my time.

aether4 11-07-2008 06:03 PM

Re: 25 yr old female, "newbie" unexplained health problems
 
[QUOTE=jmf860;3785836]not to long after i got mono. so i was down & out from that for a good 3 months, i really dont even remember those 3 monthes of my life really. i slept through most. so i got over that and a few monthes later, i felt the same way again. re occurant mono usually doesnt happen but it either did or i had chronic fatigue syndrome or something cuz i was then downanother 2 monthes. so after i got over that, its now been one thing after the other. [/QUOTE] Here's a good piece of the puzzle right here - you may have figured it out yourself.
Epstein-barr virus (mono) is a member of the herpes viruses - it does not go away. Once you have it you always have it, and most people do have it. It can reactivate in times of stress. Changing a medication like a birth control pill (off/on, switching) would be a stress your body would have to adjust to.
EBV is strongly suspected as a cause/trigger for chronic fatigue syndrome as well as many other diseases.
Have your doctors consider this route.

bethsheba 11-08-2008 04:04 AM

Re: 25 yr old female, "newbie" unexplained health problems
 
[QUOTE=shisslak;3786268].... A good rheumotologist will be able to test you for all kinds of strange illnesses including Lyme. ...[/QUOTE]

Tests for Lyme are so unreliable that some believe only a Lyme Literate Medical Doctor has the knowledge and the experience to diagnose Lyme...in other words the diagnosis is based on symptoms, not on tests.

Many people who have tested "negative" for Lyme have their symptoms disappear when they are treated for Lyme.

Bethsheba

jmf860 11-08-2008 06:30 AM

Re: 25 yr old female, "newbie" unexplained health problems
 
yes, i know that mono will forever b in my system, but they can tell by blood work if it was "active" again or not. and i know that it could b cfs, but do they really think that.. not really. or they brush it off. and even if someone does have cfs, what can really be done about that??

jmf860 11-08-2008 06:32 AM

Re: 25 yr old female, "newbie" unexplained health problems
 
i dont think they will treat me just based on the symptoms, i highly doubt that. the doctors go by medical science ya know, if the test dont show it must mean u dont have it! im sure u no how that goes. ive been tested for lyme lots of times, and i know CT is the high risk state for lyme, trust me! but ive never had one on me, pulled them off the animals in the house, but never had one on myself personally.

jmf860 11-08-2008 06:38 AM

Re: 25 yr old female, "newbie" unexplained health problems
 
yes, as i mentioned a i am supose to be seeing a rheaumatoligist (sp) in december, so hopefully they will listen and not just ship me out the door. and everyone keeps telling me about lyme, especially because i also have some leg pain, so ive been tested twice for lyme recently and nothing shows up. i know i live in a high risk state. plenty of people i know have had it this year, the animals always come in with ticks on them in the summer, but myself personally i have never had one on me. so idk.. someone else mentioned chronic fatigue syndrome since i do carry the mono virus (not active now) in the past. ill mention these things to my doctor again on monday, but i dont think shes going to believe that i have mono when the test comes back "negative". thanks~

bethsheba 11-08-2008 07:02 AM

Re: 25 yr old female, "newbie" unexplained health problems
 
[QUOTE=jmf860;3786671].... i know i live in a high risk state. plenty of people i know have had it this year, the animals always come in with ticks on them in the summer, but myself personally i have never had one on me. ...[/QUOTE]

How could you possible know for sure??...ticks can be as small as a poppy seed or the period on the end of this sentence. Ticks can hide in the hair, between the folds of the skin, on your behind! Over half of the people diagnosed with Lyme Disease do not remember being bitten by a tick...but those are only the people who have been "diagnosed"!! I suspect there are many more among the "undiagnosed" who don't remember a tick bite.

The fact that you've pulled ticks off of the animals in your house is a very big red flag that's waving even when the winds are calm.

And many people are misdiagnosed with chronic fatigue syndrome when they actually have Lyme...unlike cfs, lyme is treatable and often curable. Why settle for a chronic condition without investigating a treatable/curable condition first?

jmf860 11-09-2008 10:01 AM

Re: 25 yr old female, "newbie" unexplained health problems
 
im not going to not pursue the lyme disease thing. of course i am. i looked online about lyme literates and got a few number. there all pretty much 2 hours from where i live tho, which sucks. but ill call on monday and hopefully get in sometime soon. im def going to pursue it. im a health freak, always trying to find out as much as possible about whats wrong with me and what i can do to try n better my health. and i havent been diagnosed with cfs, not at all. ive just heard about it.. thought about it myself but never really looked to much into that.

bethsheba 11-09-2008 10:21 AM

Re: 25 yr old female, "newbie" unexplained health problems
 
[QUOTE=jmf860;3787730]... im a health freak, always trying to find out as much as possible about whats wrong with me and what i can do to try n better my health. ....[/QUOTE]

That's good to hear...even when you get a diagnosis of "whatever" keep searching for answers! Things change and so do diagnoses and treatments. If I had believed what the scientists and the doctors have told me over the years, I would be long gone......and I'm healthy!

Bethsheba

jmf860 11-10-2008 10:25 AM

Re: 25 yr old female, "newbie" unexplained health problems
 
thanks. i went to my doctors appt today with my family practioner (which is about every week or two literally that im there) todays appt was to discuss the results of my hormone levels that we recently tested for, and just as sure as i was that this would reviel something, (tested for progesterone, estrogen, cortisol and something else)... once again "NORMAL"! i thought for sure something wouldve been out of whack with that, cuz thats what we believed most of my problems were or are... hormonal. and nothing! i couldnt believe it. so i talked to her about the lyme literate doctors and possibly having it even tho the normal test that family physcians use to see wether or not a person has it or not, is not always accurate & that 50% of people with lyme are actually undiagnosed. so she asked for the # to the lyme doctor that i wanted to see and his name and she said she'll give him a call and see if he'll tell her exactly what it is that they test different so she can run whatever test it is here, threw her. so if i get somewhere with this and dont have to travel almost 2 hours, that will be great. hopefully he'll give her the info that they know & test for without any problems. so... thats that til next week, then i go to my obgyn and talk to him about having the laproscopic procedure done. asap. so frustrating. but thanks for listening and all ur input.

bethsheba 11-10-2008 10:57 AM

Re: 25 yr old female, "newbie" unexplained health problems
 
JMF,

Wow!!!! You're a dynamo~~not that I had any doubts, :D. I find it amazing to learn how very much you've accomplished in such a short period of time! Congratulations!!

It sounds like you were very prepared when meeting with your physician, and it sounds like you're working WITH someone who is willing to do whatever it takes! Great!

I don't know what the outcome will be, but I think you'll feel better knowing you've explored every possible option available.

Hopefully, you will refer to the posters on the Lyme boards with questions about your experiences...many on those boards have had negative test after negative test after negative test only to have symptoms abate or disappear with antibiotic treatment for Lyme.

If others were as aggressive as you are with their healthcare, the health care industry would be out of business....now that's a goal to shoot for, ;).

Take care JMF, and best wishes for finding your answers...but again, don't stop looking even when you've found them. People who stop looking have a tendency to repeat history.

Bethsheba

caringsister54 11-13-2008 06:26 AM

Re: 25 yr old female, "newbie" unexplained health problems
 
I had mono in 1991 (it hit during a vacation!) Anyway, was flat on my back for weeks unfortunately didn't have good doc and forced myself back to work after 19 days -- company doctor only allowed me to work 2 hours per day -- it took a year for me to get back to an 8-hour day. But because of my stupidity, Epstein-Barr is my lifelong friend now. I have Chronic Fatigue Syndrome.

Insomia (sp?), body aches and pain, onset of arthitis in hands, walking like a 90-year old anytime after 8 p.m., etc.

While it is incurable, you get a fake sense of being cured by not realizing you only adjusted or altered your lifestyle. I now have to juggle when I flip my mattresses vs. washing the floors. When I run up and down stairs doing backed up laundry to when I take the curtains down and do my windows. Just when I think I have it licked (ha ha), I do stupid things and end up 4 steps back all over again.

My doctor said to think of CFS as having a full tank of gas 24 gallons when you wake up in the morning. With each hour that passes, a gallon is gone. By the end of the night, you are so 'out of gas' that you become fatigued and ache.

Hang in there but know by your stress on the determination to find out what's wrong, you are stressing your system that forces the symtoms to becoem worse. You come across as someone whose not calm about this. While I realize that you are desperate and want a cure. If you become patient with yourself and don't let the unknowns frustrate you, some of the issue may be less.

Take Care

jmf860 11-14-2008 06:27 AM

Re: 25 yr old female, "newbie" unexplained health problems
 
thank you for ur insight. i know for sure mine is not all mono related. its way worse then just getting fatigued & aches. its indescribable what i go threw every month (which is whay they believe is endometriosis) but on top of that i believe now its something new. looking in the relm of lyme disease even tho it comes up as "negative" my knee is swollen for about the last month, its hurts .. not a crazy pain, just a moderate kind of always there feeling, then the fatigue & lots of other things. so i believe theres a few things wrong with me right now. i know from having mono things will never b "normal" again cuz it will always be in my system and when mono suffers get sick, they will always get sick a little more then the average person that dosent carry it, but i know thats not all my problem is. and if it seems like im one that gets upset "very easily" about there health. not really. everyone that has on going health issues is frustrated, if they aint... there lying!!! its been 2 years now and i am very frustrated and upset with doctors and tests and medical science but im a fighter and i will not just sit back & let someone say idk or stay sick with no answers. that aint happenin! i will keep on keepin on and hopefully one day figure this out. (and hopefully one day soon). good luck with you as well & thanks for sharing your story. -jenn


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