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1673890 tn?1304046765

Mysterious illness...doctors are clueless. Any ideas?

Hi! I am a 20 year old female and I have been sick for several months. It started this September and I am still not well. It starts with all of my joints becoming swollen, stiff, and painful to move. Then it was followed by extreme weakness to the point that I could not sit up long enough to eat dinner. I am also tired all the time and I get fatigued easily. Also occurring with the joint episode (which has happened twice now) is a weird throat sensation. It feels like I can't get a good breath. Like I'm breathing shallow and it's difficult to swallow. I also have a tightness around my neck, like wearing a turtleneck. I have unexplained weight gain. I've gained about 40 pounds in 3 years, the whole time eating healthy and exercising more than ever. My thyroid is fine. I've had a ton of lab work and a thyroid ultrasound. I have a lot of fluid retention and I now have excess skin above my eyelids (did not have that before September). My newest symptom is that my heels are bright red. I do have heel pain, but even when my heels are not hurting they are red. And it doesn't matter if I'm standing or sitting. I've had a brain mri as well as an mri of my cervical spine. Everything is normal. I've had tons of tests and x-rays done. Everything is normal. I have had 1 positive ANA, but when tested again I've had 2 negative ANA's, so the doctors declare the positive a false positive. My insulin level is the only thing that has been abnormal. It was supposed to be under 17 and mine was 58. My blood sugar is normal. Does anyone have any idea of what this could be? There are many more symptoms, but I just tried to hit the most important ones. Feel free to ask questions. I appreciate any advice or suggestions. Thanks!
9 Responses
Avatar universal
Good afternoon Kristen,
   What keeps coming to my mind is some sort of chemical exposure...The symptoms mimic so many other things, are random in nature depending on the exposure time and substance involved as well as the physical condition of person prior to exposure. Another complication to diagnosis is chemical injury is systemic, which means it hides and travels.
   Now I do know fibromyalgia very very well, it has tagged along with me for the last 25 years. Some of your symptoms such as ibs, diffused pain that travels with no evidence of swelling, heat, and a no show on any type scan or x-ray although you did say at the beginning of an episode there is swelling...Have you ever had your sed rate checked? Are you sure the pain is IN the joints? Fibro feels that way at times because of all the connective tissues and cartilege (spelling, My brain takes off sometimes), that holds everything together and fibro is a mixture of connective tissue and brain pain receptors malfunction. As for Cymbalta...NO< NO< NO<, maybe lyrica...and by the way how well do you sleep? What about you vit D level?
And just what was your TSH numbers, (thyroid stimulating hormone). Since you had the ultrasound and nothing showed there, it does not mean that it is functioning properly. Did the drs dig further to find out your T3&T4 as well as the T free3 and T free4?
Lymph nodes are in the armpits and other places as well, and are regulated by more that one organ. One of the regulators is the thyroid which is regulated by several other organs such as the hypothalamus and pituatary (yea, it left again), anyway the numbers can be one way one day and completely different a week later.
   You said that you noticed no difference between the places you would go and the symptoms...Depending on the cause of these unusual things happening to you, it might take a day or two for some symptoms to lessen and others to activate so it may help you to (and I DO), have a daily system of documentation, I have learned, when I feel it, write it down, Date, Time, Symptoms....I put it on my calender that has big blocks with the dates and I also use code letters....Big P circled in top corner means good size poo,
Smaller p circled in top corner is little poo and no p is no poo. I created a list at top where month is displayed as to what means what. A Big Big P somewhere in the middle of the blank area of the date is alot of pain that day. I also mark it when I take meds as some are on an every third day schedule or 1 x weekly, and as well I can gauge the use of things such as nebulizer (AGAIN) treatments.
   This ? is ask so that WE can FIGURE THIS OUT....Do you eat many foods MADE FROM FLOUR, like breads, pastas, cereals or many heat to eat foods?
   Please list any allergy type problems you know of such as pollens, dust or foods....
   With that, I will go for now...honey I sure do hope you feel better soon.
    Have a wonderful Blessed Day!           God Bless!!    loimmarmar      
Avatar universal
dear KristenPaige08,
did you test Uric Acid, BUN, kidney function.
1673890 tn?1304046765
Yes I did and they were all normal. Thanks for the reply!
Avatar universal
How are you? What other symptoms are present? This could indeed be due to autoimmune conditions and additional tests may need to be done for proper diagnosis. Infectious conditions may need to be ruled out also. Were there other imaging tests done such as MRI or  CT scan? A referral to a specialist such as rheumatologist or infectious specialists may help also. Take care and do keep us posted.
1673890 tn?1304046765

Thank you for your reply. I am still not doing very well. Some of my other symptoms are dizziness, stretch marks even when not gaining weight, headaches, knee pain, and just not feeling well in general. My symptoms also seem to cycle. Some symptoms will go away but as they go away other symptoms will come back. I had mono in 2006 and my current dr. thinks that may be related to all this. I've had 2 brain MRI's and 1 MRI of my cervical spine. I've also had a CT of my sinuses. I have been to a rheumatologist, a neurosurgeon (bc they found chiari malformation on my MRI, but he doesn't think that is causing any of my symptoms), an ENT, and 2 family practice doctors. All of my x-rays look fine, so they don't think rheumatoid arthritis. They also don't see enough evidence to think Lupus is the problem either. The rheumatologist said I had fibromyalgia, but the treatment he gave me (Cymbalta) made me 1000x worse. And after reading about fibromyalgia, I just don't feel like that fits me. And when I was diagnosed, I didn't even fit the criteria to be diagnosed. My current doctor has tested me for lyme and underlying bacterial/parasitic problems, all the tests were normal. Do you have any thoughts of which autoimmune conditions could cause symptoms like this? I appreciate your help and advice.
Avatar universal
    Hello honey, how are you doing now 7 hours after your last reply? I can hear the bewillterment in your typing. NOW, I'm going to ask you alot of ?s. Some, you may want to just ponder on within yourself, you know, VERY personal, but please answer all of them that you can. These are the kind that the drs do not usually ask...
  Was your complete blood count within normal values or were there two plus more results that were either under or over?
  How long have you lived where you do? If it has been extended as in years, has anything changed; for instance: water damage of flooded basement or roof leaked, new carpet installed, rehab of dwelling in any form,
   Do you work? Are things worse at work or home?  
   If you do not work think about when you go away for hours to days, are things slowly different?
   Are your teeth ever loose for a week or so then tight?
   Do you have a good bowel movement EVERYDAY?
   Is your urine clear with a color of pale yellow?
   Does it change shades from day to day according to how you feel?
   Have you ever found this...The urine sinks to the bottom and the top several inches of water is as clean as if just flushed?
   There are several things that go through my mind so please let us know more details as time permits you.       God Bless!!                      loimmarmar
1673890 tn?1304046765

I am still doing about the same. No major changes in the past few hours. And you are exactly right, I am completely bewildered! I just don't understand how I can feel so bad and even look sick and all of my labs be normal. Now to your questions...

1.My CBC was normal, I think the only thing that was low (which they told me not to worry about) was alkaline phosphatase.
2. I actually just moved last month, but since I got sick the first time in Jan of 2009 i have lived 3 different places (I'm a college student). I moved in April 2009 and we did have the carpet replaced, but that is it.
3. I currently do not work because I am too sick to work. I was attending school, but had to drop out this September. Things are good at home, I have a very supportive family and I am engaged to be married.
4. My condition doesn't seem to change depending on where I am. I have good days and bad days, but I have never had all bad days at one house and more good days at another house. (I go between my house and my parents house quite often)
5. I have never noticed my teeth being tight or loose, but I will definitely pay attention to that from now on.
6. Right now, yes i do have a bm every day. I used to have a horrible problem with constipation, but my dr. put me on diflucan for 2 months to kill the yeast in my intestines and he put me on probiotics. Ever since then I go to the bathroom every morning. It may be important to note that I have had problems with constipation since I was a child. I have been diagnosed with IBS, but that is also better now.
7. I would say my urine looks pretty normal. It only changes colors depending on how much water I've had. Of course its darker in the morning and more pale during the day. I've never noticed it sinking to the bottom, but I will be sure to pay attention to all of these details from now on.

Now some other things I forgot to mention earlier...Another symptom I have been experiencing for the past month is a stinging sensation under my arms. It literally feels like a bee is stinging me in my arm pit. I have actually looked several times to make sure nothing is there. I don't have a rash/red bumps or anything. It is totally random. I am on prometrium (progesterone) bc my level was a little low, but that isn't listed anywhere on the side effects, so i don't know what to think about that. I also had terrible knee pain as a child and I was diagnosed with Jr Rheumatoid arthritis, but the doctors recently told me that I do not have that. All of my x-rays show no joint changes or damage, and I was very active as a child. I do not have the classic arthritis symptoms. My joints ache, but more at night than in the morning and they are never red and hot. I don't know if this recent illness could be related to that or not. If you have any other ideas or questions I would really appreciate to hear from you. Thank you so much for your reply!
1673890 tn?1304046765
Hello again! I'm sorry it has taken me so long to get back to you. What exactly do you mean by chemical exposure and chemical injury?

Yes I've had my sed-rate checked. The first joint episode in Jan of 2009 my sed-rate was 24 (supposed to be less than 20) and this time it was 20. However, when I went in 2009 my joints were way worse. This time I knew it was coming back so we went to the doctor. Idk if I would have waited for it to get bad if my sed-rate would have been higher.

I am pretty sure my pain is in my joints. The only ones that hurt every day or almost every day are my knees. (which i find interesting since I had knee pain as a child). Sometimes my knee pain feel like it goes from the bottom of my knee down my shin and to my ankle joint. Other than that, all other joints hurt just at the joint, as they swell just at the joint.

I sleep really well, but I am on progesterone which helps me sleep. But before all the meds, I always slept well. I do often have trouble going to sleep though.

My vitamin D level was low and I've been on 5000 IU Vit D daily for about 3 or so months.

I've had my TSH checked several times and the highest its ever been is 1.85 and lowest a 0.85 (on a scale that goes to 5) and yes I have had all of the other thyroid hormones tested as well. I can't tell you the number because the labs are at my parents house, but my current dr. did say I have reverse T-3 syndrome and I am on 50 mcg of T3.

I should tell you that I was majoring in nutrition and dietetics to be a dietitian before I had to drop this September. So I am pretty health conscious. I have tried going gluten free (even though celiac test was neg.) and I've tried dairy free. I've tried reducing sugar too. I do not eat many foods from flour. I do normally eat a sandwich for lunch, but I don't go overboard with the breads. However, lately I have been able to link my ibs episodes to when I eat pasta. And it's so weird bc it's not all pasta. For example mac and cheese from the box is fine, but homemade mac and cheese with different noodles =ibs. And so does spaghetti noodles. And bread is fine. So I don't know what could be in one noodle and not the other. I should also mention that the ONLY way I  have ever lost weight is to cut out all grains (which I'm not sure what I think about that). However, when I eat a cracker I gain it all back. As far as allergies, I'm not away that I have any. I do normally get sick in April, so I guess that's just seasonal allergies, but since I've had my tonsils removed I haven't been sick like that any more.

Thank you for your suggestion about the symptoms diary. My mom keeps telling me to keep one. I just find it so hard to write every little thing down because I feel like I would be writing non-stop. But I like how you have initials for different symptoms. I'll have to create me a system that works, Thank you so much for your reply. I really appreciate you trying to help me.
Avatar universal
Hello there honey and how are you feeling lately? I lost touch with you as I was new to this site and did not know till later of the Watch list, but I'm getting more savvy now about using the site....I know what to say but did not know where to find you!!!!    NOW I DO!!!
It has almost been a month since I posted here in This Forum and the only way I found you again was; the quest to find out where that Best Answer thing came from...It was you....hopefully you are feeling better now and have some more answers from the drs and testing.....When I mentioned the Gluten and or casin...I was referring not to celiac, chrones ...but something called....LEAKY GUT SYNDROME.....It can cause ibs and the build up of the gluten(GRAINS) and casin, (DAIRY PRODUCTS),...since you were studying to be a dietition...GREAT...I can talk and you will understand well.............Leaky gut is a condition not reconized by traditional drs,...Environmental drs know..It is thought that it can and does create havoc in the bodies of children who develop autism and the answers are still out there for debate.
Now, I do first hand know about autism and the MOTHER WARRIORS against it...My grandson shows symptoms of it and my daughter has become one of those Warriors...she has been to conferences in cal as well as getting all the books...she is now three years into finding cause as well as cure.....And my grandson is MUCH IMPROVED..I learned first hand.....He was tested extensively as well as the parents...to find the causeation......
   Now it is thought that exposure by the MOTHER to chemicals such as Mercury (Found in many fish, because of OUR habits of disposal and dumping things) as well as the amalgamid(spelling) fillings in the teeth, as that is made with mercury, hence the Silver color,
(that is now in the process of changing)...but in many the damage has already been done....also under investigation and suspision (brain again) and much controvercy are, immunizations and their potential cause of conditions such as what I speak of here.....autism and other malities of our CHILDREN!!!!
I AM NOT SAYING YOU HAVE autism....NO.... YOU ARE AN ADULT and do not have the signs of that but now let me explain......
   As you probably know...certain foods can and do cause reactions in some people....
  If you think of the colon as a Hose...it holds our poo, and as it travels through.. that is where the vitamins, nutrients and minerals travel through the ja ju num (that is in the lining of the colon), and feeds our bodies...think of it as a garden hose....now gluten and casin are natural CHEMICALS....If I could just draw a picture right now.....think of what a picture of a piece of bread looks like and as well, one of the bottles of milk (like the milk man would deliver...((THAT SHOWS MY AGE ...L.O.L.)) anyway...now imagine that the garden hose has holes all along it, (small ones for the vit, min and nutrients to travel through), but through some type of toxic exposure....these holes became bigger than normal....Now when the natural chemical from the bread (or gluten), and milk (or casin), go to travel through...They found the bigger holes, so that now they do not have to break down further...less work, YEA, lets go through here....Easier!!!! During your learning, I do not know if you got to the blood, brain barrier section prior to dropping out, but if certain natural or man made chemicals get to the brain...it can cause the receptors in the brain to malfunction, which in turn can throw the body off so much that it seems as if there is no end to bad and unusual symptoms...
   LONG STORY SHORT...(yea right), When I stopped all gluten and casin...my body went nuts at first...(it was getting rid of all that bad stuff in there.)...then things started to change when it came to bms, I started to GO...everyday....I had Never done that!! Also the symptoms of the FROZEN shoulder that I had been experiencing for about a year, (maybe caused by the 13 hour brain surgery to repair the sub-araknoid hemmorage in "05")(( I learned that many who have had brain surgery get a shoulder that will not move very far and IT HURTS)), any way after 1 1/2 months of eating this new way....I COULD MOVE IT...and I found out quite by accident....I went to put my hair in a pony...and after I did I went WOW!!!!and within several hours I learned that I could reach around and pull up my underware and NO PAIN...next thing you know I could scratch my back with that arm as well as reach out and pick up my coffee w/ NO PAIN...now 7 months later....full movement, No more pain other than the Normal fibromyalgia stuff I've shown for the last 25 years....WWHHHHHHOOO!!!! I am still eating this new way and find other things getting better...This sounds funny, but the poo SMELLS different, and yes, better...I do not believe I just said that...Anyway..the original toxic exposure for me was to natural gas and the leak in my apt for 3 1/2 years and which during that time, i had pnemonia and was put on life support for 6 days in "97...during those years I had cervical cancer w/ surgery, hair falling out, skin turned gray and lesions that would grow 2-3 days after the smallest break in the skin on the hands, (to this point...over 200 drs in 3 states have no idea what the cause was)....I know it was the gas...It changed my blood...Imagine when the drs ask you to go have a specific test done 3 xs because they could not get enough D.N.A. from it to do the test and then the dr says "your lungs are dissolving"...you ask "WHY", and the response is "I don't know"!!!!
   With all that said...TOXIC EXPOSURES can be awful to the body and the time between exposure and onset of symptoms is not always right away...Now that my body has become suseptable...and or INJURED, other things will set off the symptoms in a moment and as well the moldy basement that was in the last apt (in which I was exposed to for 5 years) caused the re emergence of symptoms and conditions....Those are the things I was referring to when I mentioned in another post to you about exposure and you had ask what I meant by that....btw...a sed rate of 12 or less is the normal #s one WANTS.. Sed ..gauges the inflamation in the body and blood..The #s you gave for the tsh...when mine were that low and then through the t free 3 and 4, it was found that GRAVES was responsible for that and that can be caused by guess what....exposure... I do have a website about all this as well as writing a book and yes the law suit...However I may NOT share that here for everyone to see...(ALTHOUGH....I WANT TO!!!))) I will not break the rules so if you want more on that...just ask and I will post to you alone and no...I DO NOT SELL ANYTHING THERE....JUST THE FACTS as I found out...THE HARD WAY... Keep well and in touch...Have a wonderful Blessed Day..  GOD BLESS!!!!    loimmarmar
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