Discussions By Condition: I cannot get a diagnosis.

Unexplained fever, dizziness, lightheadedness

Posted In: I cannot get a diagnosis. 24 Replies
  • Posted By: jsieleman75
  • June 30, 2009
  • 01:52 PM

Hello. I'm hoping that someone has shared my same frustrating experience to help shed a little light on my issues.

I'm a 33, almost 34 year old mother of 2 boys, ages 7 1/2 and 13 months.

My 13 month old rarely slept more than an hour at a time until he turned 1 and therefore I have not had a decent nights sleep in a very long time. This is probably part 1 of my problem. I nursed until May 3rd, he turned 1 on May 22nd. Due to thrush, both in my son's mouth and on my breasts, I quit early so that we could kill the bacteria.

Going back to 1/22/09, the first time I went to the doc for my symptoms...

Generally, my temperature is somewhere between 96.7 and 97.2...always has been every time I take my own or go to the doc, since I was a little kid. So anything above that and I usually know something is wrong...I feel bad before I even know my temp is above that.

Anyhow, my temp was 99.8 when I went to the doc. My blood pressure was a lot lower than normal. I'm normally 120/80...it was 98/67. I went in because I was feeling dizzy, unsteady, lightheaded, my hands had gone extremely cold while at work and I thought I was going to pass out (I actually put my head between my knees sitting at my desk)...that is when they took my temp and said I had a fever. Strange for me...I'm never sick. I usually get the flu once a year and then I'm good the other 360+ days of the year, depending on how long the flu lasts.

My doc asked a bunch of questions and looked in my ears and said I had a murky fluid in them and they were infected...Ah, the reason I'm dizzy, a double ear infection!! YEAH ~ an answer!! Gave me a Z-pack and I was on my way.

This same senario has happened about 8 more times in the last 5 months...the lightheaded, dizziness, unsteadiness has not gone away, I live with it every day, I still get what I call "episodes" where it is worse...those are the times my hands either go cold or I get really warm and feel flushed and want to pass out or rather, feel like passing out.

After the so-called double ear infection, I came back to a different doc, mine wasn't available, as I was still having symptoms. I presented with a low-grade fever again...99.4. She said no infection left, but still fluid in my ears, gave me a different medication.

A few weeks later I had another episode. Temp was 99.2. Ears were fine. My blood pressure was elevated at 139/96. Went to the 2nd doc again, she drew blood and sent me for a CT scan. I was a hold and call. I was released with an antibiotic and a prescription of 15 days of fluconozole for the thrush.

A week or so later, my Mom and I were eating lunch and I had a horrible "episode" at the restaurant so much that I couldn't eat. I called the doc and they couldn't get me in until 3:45 that afternoon. It was 11:15am. I contemplated going to the ER...my Mom took me. They drew blood, pressed on my stomach, etc. They tested me for diabetes. He also thought maybe it was my gallbladder since I was eating when this happened. My gallbladder didn't hurt. It had nothing to do with me eating. It was dizziness, lightheadedness, feeling faint. I had a temperature of 98.6. Ultrasound of my gallbladder was done. Nothing found. Now while I admit that these "episodes" do make me anxious when they happen, it is not anxiety that brings them on. I have had anxiety before...I know what it feels like. These happen when I'm busy, I'm thinking about my work that I'm doing, etc. When I had anxiety, it was because I was thinking of what I should do, worrying, etc. This ER doc made me feel like an idiot and basically told me nothing was wrong with me and that I was probably just anxious. On my checkout papers it said they treated me for fever.

My husband and I took a trip to Florida at the end of May and I wanted to make sure my ears were fine before flying with all of this supposed ear infection junk so I scheduled an appt. with an ENT.

He told me that my ears were fine. I never had an ear infection if I didn't lose hearing. So this made me more confused. If no ear infections, than what? Do I trust my regular doc and the other doc in her office? They said I had ear infections and murky fluid in there...the ER doc said nothing was wrong with me...is nothing wrong with me? But I have a fever...

The ENT suggested my imbalance may be viral labyrithitis. If it didn't get better he wanted to schedule a balance test at the hospital. He tested me for BPPV, but I knew it wasn't that, as I had that a couple years ago and had physical therapy to teach me the exercises to correct it and I remember what the dizziness felt like. My eyes felt like they were jiggling in my head and this is different.

We left for vacation, I still felt dizzy and lightheaded.

We came back from vacation and I had another "episode" maybe a week and a half later. I went to my normal doc again. My fever was 99.4. My blood pressure was a little elevated at 128/86. I began crying because I'm so frustrated. I told her that I feel crazy other than having a fever. She even told me she would think it was anxiety if I hadn't had the fever. She drew up some different blood work than they did before and ordered an MRI. She also setup an appt. for me with a Neurologist.

Blood tests were all negative. I know they checked my Thyroid, Rheumatoid Arthritis and hormonal issues given I had a baby 13 months ago. They checked my white blood cell count 6.2 - normal. Not sure what else. They suggested it may be autoimmune and may put me on 5 days of steriods to see if I feel better. They may also want to rule out my kidneys, but haven't done so yet.

I had the MRI it was unremarkable other than showing I have sinus disease. She ordered me a 10 day supply of Bactrim.

I have no signs of a sinus problem. My nose is not full, does not drain down my throat or otherwise, I have no pressure behind my maxillary sinuses, nothing.

She wanted me to keep my appt. with the Neurologist. That is on 7/15.

I have been on the meds for 4 days and have no signs of improvement yet.

I do not like putting pills in my body and have been extremely medicated this past 5 months.

Sorry for the long post just wondering if anyone has had this...if it all could be caused by exhaustion or if you have any ideas of what is afflicting me.

Thank you so much for reading this and God bless you!!

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24 Replies:

  • I also forgot to mention they did an EKG and all was well with it too. Thank you! :confused:
    jsieleman75 11 Replies Flag this Response
  • I am by no means a doctor, but a couple points you made did stick out to me. I am currently recovering from a post-viral neurological disease (ADEM) that was diagnosed as an inner ear infection due to the dizziness and low grade fever. However, it hit quickly, and did not recurr over time like yours, but I do think some of the symptoms seem similar and the neurologist could give some insight. My brain stem was affected, which increased my blood pressure and heart rate, which the doctors could not explain at first when they believed it was an ear infection. If your BP was dropping at first, that could surely explain the fainting feeling. Maybe a neurologist could have some insight about these array of symptoms that may seem unrelated. I got steroids too, but it took a very high dose a couple times to get rid of it. I hope you get the answer soon! Good luck and God bless!
    Anonymous 42,789 Replies Flag this Response
  • You might have BPPV. You can read all about it and the new treatment for BPPV at www.dizzyfix.com.
    Anonymous 42,789 Replies Flag this Response
  • I am by no means a doctor, but a couple points you made did stick out to me. I am currently recovering from a post-viral neurological disease (ADEM) that was diagnosed as an inner ear infection due to the dizziness and low grade fever. However, it hit quickly, and did not recurr over time like yours, but I do think some of the symptoms seem similar and the neurologist could give some insight. My brain stem was affected, which increased my blood pressure and heart rate, which the doctors could not explain at first when they believed it was an ear infection. If your BP was dropping at first, that could surely explain the fainting feeling. Maybe a neurologist could have some insight about these array of symptoms that may seem unrelated. I got steroids too, but it took a very high dose a couple times to get rid of it. I hope you get the answer soon! Good luck and God bless! Hi there - just wondering how you got the ADEM diagnosed. Was it found on an MRI or just by visiting with a Neurologist, or how? Thanks so much for the info!!! I truly appreciate it!! I have my appt. with the Neurologist tomorrow at 8:45a.m. :o
    jsieleman75 11 Replies Flag this Response
  • Hi there - just wondering how you got the ADEM diagnosed. Was it found on an MRI or just by visiting with a Neurologist, or how? Thanks so much for the info!!! I truly appreciate it!! I have my appt. with the Neurologist tomorrow at 8:45a.m. :o There is no one test for ADEM, but on MRI with contrast, it shows lesions on the brain. I also had a spinal tap that have some findings that are different than MS (no OC bands, and a few other things but I'm not positive what they are). Also, ADEM presents with fever, headache, vomiting, virus *not always all* unlike MS. They share many symptoms though. However, ADEM hits quickly and hard usually, and I believe you have suffered for awhile. An MRI may show something though that would help find out what's going on. Good luck & God bless!
    Anonymous 42,789 Replies Flag this Response
  • Hello. I was wondering if you ever found anything out about your illness. I know someone who has had the same symptoms as you and they've gone through every test imaginable and nothing has showed up. A response would be appreciated. Thank you.
    Anonymous 42,789 Replies
    • September 21, 2009
    • 09:44 PM
    • 0
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  • Hello. I was wondering if you ever found anything out about your illness. I know someone who has had the same symptoms as you and they've gone through every test imaginable and nothing has showed up. A response would be appreciated. Thank you.hidid u find any reason for your illness. I am also suffering from same problems and doctors are not able to diagnose the reason for it. thanks,Sakshi
    Anonymous 42,789 Replies
    • September 24, 2009
    • 09:06 AM
    • 0
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  • hidid u find any reason for your illness. I am also suffering from same problems and doctors are not able to diagnose the reason for it. thanks,SakshiI've had these same symptoms for ten years and they started out as Bed spins but progressively got worse. The panic and anxiety from the fear of passing out is the worse part. I still suffer from the dizziness occasionally. I believe I have some form of Vertigo that comes and goes when it pleases. It reoccurs after a visit to the dentist or hair salon because my head has been tilted back to far. The best advice I can give to anyone who has low grade fever and dizzy spells and nothing else is to take a strong antihistamine like Chlortab to dry up any ear fluid, Zyrtec can cause the dizzy spells but it helps with allergies. Counter the dizzy spell with Dramamine(the old kind) Dimenhydrinate. I usually take 1/2 a pill at first sign of dizzy. Stay away from Caffeine and drink more water. Try to stay calm during the episode ( I listen to spa radio on my iphone to relax me). Take Ibuprofen or Tylenol for the fever. If you have been to the doctor several times and they can't find anything you might try just using some old fashion mind control - this is a sign of anxiety, depression, and stress - get some rest, take control of it! don't let it control you. Diet and excercise help out - try using the Wii fit if you dont usually excercise. This advice is only for those who have been diagnosed with no definite medical condition. Oh, I almost forgot - cell phones and computers can flicker and cause dizzy spells so take a break from surfing the internet on them. Women over 40 - go have a stress test on your heart and get checked for high cholesterol this can be an early sign of heart disease. HLROCKER
    Anonymous 42,789 Replies
    • September 29, 2009
    • 03:41 PM
    • 0
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  • What you posted is almost 100% similar to what my wife is having for about 3 yeras now to date (April 2010).My wife has three kids (9 years, 6 yrs and 3yrs). The first two were born naturally and the lasy born by caesarian section. The recovery from the C-section was prolonged and painful.Some time in 2007, my wife started feeling dizzy and tests done were inconclusive. She was put on multi-vitamins and iron to improve her HB. Still her hands were cold and dizziness continued.In june 2009, we saw a gynaecologist after my wife complained of dizziness, cold hands and and prolonged chocolate brown menstrual bleeding. He did a uterine scan and picked a pocket of fluid and recommended hysterectomy as he believed the pocket was a post C-section complication. The gynaecologist even cited his wife as a person who has similar problems which were resolved by hysterectomy. We asked for time (now about 9 months) to consider the solution. Today I am sure that he might have been right. My wife is now having fever regularly post mensturation associated with dizziness and some halucination. She has been on very powerful antibiotics for over a month now on suspicion of septic sinuses with no help.Being a veterinarian, I suspect she is having some form of toxic shock originating from the mentrual blood retained in the 'pocket' in the uterus supporting bacterial growth. This bacterial growth, I suspect, releases endo and exo toxins into the blood causing the fever, dizziness and other associated signs! Is this not a form of toxic shock syndrome (TSS) from Staph aureas? We are visiting the gynaecologist tomorrow to find out if this is possible!
    Anonymous 42,789 Replies Flag this Response
  • I just came happen to find this post because I have the exact same thing. I also feel VERY tired and flush, like I might pass out. All blood work was great, they also tested me for strep and mono, both were negative. They said I look very healthy on paper, but I am very sick to my stomach, tired, weak, faint, dizzy, and freaked out. I do suffer from anxiety, and agree totally with what you said. I know when my anxiety is bugging me, and I know it can make things worst, but this feels different, besides, I don't think anxiety can cause a fever.Any word on what happened with your tests? I know it has been awhile since this thread was started.
    Anonymous 42,789 Replies Flag this Response
  • What you posted is almost 100% similar to what my wife is having for about 3 yeras now to date (April 2010).My wife has three kids (9 years, 6 yrs and 3yrs). The first two were born naturally and the lasy born by caesarian section. The recovery from the C-section was prolonged and painful.Some time in 2007, my wife started feeling dizzy and tests done were inconclusive. She was put on multi-vitamins and iron to improve her HB. Still her hands were cold and dizziness continued.In june 2009, we saw a gynaecologist after my wife complained of dizziness, cold hands and and prolonged chocolate brown menstrual bleeding. He did a uterine scan and picked a pocket of fluid and recommended hysterectomy as he believed the pocket was a post C-section complication. The gynaecologist even cited his wife as a person who has similar problems which were resolved by hysterectomy. We asked for time (now about 9 months) to consider the solution. Today I am sure that he might have been right. My wife is now having fever regularly post mensturation associated with dizziness and some halucination. She has been on very powerful antibiotics for over a month now on suspicion of septic sinuses with no help.Being a veterinarian, I suspect she is having some form of toxic shock originating from the mentrual blood retained in the 'pocket' in the uterus supporting bacterial growth. This bacterial growth, I suspect, releases endo and exo toxins into the blood causing the fever, dizziness and other associated signs! Is this not a form of toxic shock syndrome (TSS) from Staph aureas? We are visiting the gynaecologist tomorrow to find out if this is possible!I just got back from the emergency room after having all of these same symptoms everyone has described. I was diagnosed with Pelvic Inflammatory Disease. Just a little side note...I had a c-section on 9-10-09 with issues afterwards such as the "mud" colored blood, lower abdominal pain, etc. I finally stopped bleeding in Aug 2010, and I haven't bled at all since. Up until tonight, I had been to several obgyns as well as specialists to try to figure out what was wrong with me and no one could figure it out. None of the other doctors had come up with Pelvic Inflammatory Disease. That's why I don't stick to one doctor. I always second guess and get second opinions (as well as 3rd, 4th, 5th, etc). More often than not with my luck, the first doctor who gives me an opinion on something is usually wrong. Hope this helps at least one of you!
    Anonymous 42,789 Replies
    • November 5, 2010
    • 11:49 AM
    • 0
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  • Hi all! Sorry it's been awhile. I have not gotten any answers as of yet. Still searching. I have new added symptoms as well. I still feel all of the same things as well. I have even gone to Mayo Clinic. While I was happy with their system, they too just wanted to treat my symptoms rather than find the problem. Makes me sad. They asked what my top 3 symptoms were and sent me to specialists to treat those symptoms rather than see what might be causing all of them. What happened to doctors that want to try and help people find a solution? I hate having to be my own doctor and taking ideas of what could be wrong with me to them to test me for them. Shouldn't they know what it might be? Isn't that why they went to school...to determine what all of my symptoms might be from??? VERY FRUSTRATING!!!! Anyhow, I had the MRI w/contrast and it was fine. I had a sleep study done and was found to have Idiopathic Hypersomnia. This just means they have NO idea why I'm excessively sleepy and wanted to prescribe me pills to stay awake...again, no thank you, as I want an answer not a pill for a symptom. I also had to get reading glasses, by my vision is still not "right". My back and neck have been causing me tons of pain. The back pain is very strange....it is across the mid portion and radiates out. I actually have weird knots in my back and the chiro I go to does help them some, but it is so painful I have major difficulty falling asleep at night. I went back to the doc last week for more bloodwork, as I had my right big toe become swollen on 10/19, all of a sudden. Went to the on-call ARNP and got prescribed 7 days of Leviquin for what she was "calling" a soft tissue infection. Sometimes it feels like they just throw a dart at a dartboard with their choice of words. Needless to say, that and the 7 days of soaking it in Epsom salt, did NOT work. Upon going back to my doc last Friday, I had a fever of 100, more than when I first presented with the new toe symptom (99.4). She is now testing me for Gout, Lupus, low immunoglobulins and a bunch of other things. In the meantime however, I am to just wait with my fever. No more meds, which is fine with me because I hate them, but just weird I think. I also forgot to mention that about a year ago, I had a swollen lymph node in my right arm, but my white blood cell count was fine...how weird is that?!?!?! I only noticed it because I rest my right arm on the console when I drive and it hurt every time I would set it there...it got bigger and bigger and then after several months went away. How are the rest of you doing? Any diagnosis??? I will try to stay more current with this and hope that you all find a solution. Good luck & God bless!! :)
    jsieleman75 11 Replies
    • November 9, 2010
    • 11:04 PM
    • 0
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  • I forgot to mention I've also had an ENG that came back fine and have seen a physical therapist for months for the back and neck pain which has done no good. I also found out at Mayo that I am extremely vitamin D deficient, but I live in the midwest for goodness sake...as my regular doc said, who isn't vitamin D deficient that lives here...at least for 6 months out of the year. :) I do take a supplement now with no shown improvement. :)
    jsieleman75 11 Replies
    • November 9, 2010
    • 11:27 PM
    • 0
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  • I also meant to mention on my Idiopathic Hypersomnia... the average person falls asleep within 7 minutes. I fell asleep within 3 minutes at all 5 of my daytime sleep latency tests. 8am, 10am, 12pm, 2pm and 4pm. It didn't even feel like I was asleep. In fact I thought I fell asleep for 1 of the tests but wasn't even positive on that and this is likely why I feel like I don't ever sleep. I never got to REM sleep in any of the tests...no wonder I don't feel rested and am exhausted all of the time. And, just so you know, there is no pill that will get you to deep sleep. They could prescribe me Ambien or something of that nature, but all that does is extend your sleep duration not get you to the restful sleep we all need.
    jsieleman75 11 Replies
    • November 9, 2010
    • 11:33 PM
    • 0
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  • So I got a positive test result on one of the blood tests my doc ran last week. My RF is elevated. The is my Rheumatoid Factor. Normal is 0 to 20 and mine is a 25. They are now referring me to a Rheumatologist. I should have an appt. tomorrow. Just in checking quickly Rheumatoid Disease could cause fever, pain, my newly swollen joint, sleeplessness, etc. So this could likely be the major culprit of my issues. We shall see if this is my only problem. I will stay in touch and let everyone know what is happening. :)
    jsieleman75 11 Replies
    • November 11, 2010
    • 00:35 AM
    • 0
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  • It's good that something finally came back positive. At least you're getting pushed in the right direction.Since you've been diagnosed with an autoimmune condition, I'd suggest cutting out all gluten (if you haven't already). It's a well-documented irritant to, and sometimes even the cause of, many autoimmune conditions. I suffered from fairly severe gastrointestinal problems after having my galbladder out, and even had many of the symptoms you have (unexplained fever, shakiness, extreme fatigue, random inflammation, etc.). Several doctors told me I was crazy, but I finally linked it to wheat. After a few gluten-free weeks, I don't have any problems, as long as I consistently steer clear of it. (As always, IANAD.)
    Altari 9 Replies
    • November 11, 2010
    • 00:57 AM
    • 0
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  • Ok, so I saw the Rheumatologist. He was a semi-******e at first by dismissing the reason I was there in the first place. He asked what he could do for me and I said, "Um, I have an elevated RH Factor and my doctor referred me here." His response, "Barely!" It took everything I had not to tell him off and stay in his office. He actually examined my lump on my big toe and stated he thought it was a synovial cyst, however he doesn't suspect I have RA. Anyhow...I had 4 viles of blood drawn and some x-rays of my back. He gave me Diclofenac & Cymbalta for my back pain and it has helped about 90% - 95% of the pain. I just got a note from him in the mail yesterday that said that my ACE levels were mildly elevated and they will re-test them this Friday when I return. He stated that this is usually seen with a rare disease called Sarcoid. Still no firm answers, but we do know now after 2 years that I have a BARELY elevated RH Factor, mildly elevated ACE levels and a Synovial cyst in my right big toe. Hopefully he can pull all this information together along with my not reaching REM sleep, being fatigued and dizzy all the time and the swollen lymph node I had in my arm and give me a diagnosis. Hope all of you are finding out what is ailing you. God bless!
    jsieleman75 11 Replies
    • December 8, 2010
    • 01:46 PM
    • 0
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  • UPDATE So I went to my 12/10 appt. and had another 4 viles of blood drawn and a chest x-ray done. Radiologist read the x-ray and said it was satisfactory. No enflamed lymph nodes and no granulomas. I did receive another hand-written note from my Rheumatologist who said that my ACE levels are still increased and we can talk more about it at my next appt. scheduled for 1/21/11. Which will be exactly 2 years since all my symptoms started. Hopefully we get somewhere. I have to admit that the 2 meds he has me on has gotten rid of most of my pain, which I am thankful for, but I am still exhausted, get frequent headaches, am still dizzy/light-headed and still have bad stomach pains/upset most days. I will keep posting updates as I get them. Merry Christmas to all and have a Happy New Year!! :)
    jsieleman75 11 Replies
    • December 26, 2010
    • 10:06 PM
    • 0
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  • I had very frequent headaches/heavy head, was tired a lot, couldn't keep my eyes open most of the day, had very stiff shoulder every day. It ended up being amine and glutamate intolerance. When I went on "failsafe diet" for two weeks, suddenly my chronic neck pain, almost everyday headaches, tiredness plus lots of other problems disappeared. Aged cheese/sourdough bread I used to eat every day was making me lightheaded, tired and dizzy, aged beef dinners was making me sleepy right away and also giving me headaches next morning, soy sauce/MSG was causing the shoulder stiffness and extreme tiredness I just couldn't figure out why I was feeling so sick everyday until, by totally coincidence, I figured out my intolerances. Unless I eat wrong foods by accident, I am fine now.BecUPDATE So I went to my 12/10 appt. and had another 4 viles of blood drawn and a chest x-ray done. Radiologist read the x-ray and said it was satisfactory. No enflamed lymph nodes and no granulomas. I did receive another hand-written note from my Rheumatologist who said that my ACE levels are still increased and we can talk more about it at my next appt. scheduled for 1/21/11. Which will be exactly 2 years since all my symptoms started. Hopefully we get somewhere. I have to admit that the 2 meds he has me on has gotten rid of most of my pain, which I am thankful for, but I am still exhausted, get frequent headaches, am still dizzy/light-headed and still have bad stomach pains/upset most days. I will keep posting updates as I get them. Merry Christmas to all and have a Happy New Year!! :)
    Anonymous 42,789 Replies
    • January 3, 2011
    • 11:45 AM
    • 0
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  • So I'm waiting for my next Rheumy appt on 1/21 and decided to get copies of all my past labs and just see what they all said. I found it very interesting that since the onset of my symptoms 2 years ago, I have had multiple results on my blood test that were too high or too low and I was told nothing of them. I was told I was fine. How can I be fine if my results are either above or below the ranges in which these docotors offices go by? This makes no sense to me. I thought maybe the results of those particular items wouldn't be important then if they didn't tell me about them, but then why would they check for them if they aren't important? My MCV (Mean Corpuscular Volume) and MCH (Mean Corpuscular Hemoglobin) have been high every single blood test for the last 2 years. My HGB (Hemoglobin) has been low or borderline every time. My RBC (Red Blood Cells) have been low or borderline almost every test. My MPV (Mean Platelet Volume) has been low or borderline almost every test. And my last test I had done 11/5/10 when my RH Factor was elevated and they passed me to a Rheumatologist, my LY was really low, my GR was extremely high, my MCH was really high and my MPV was really low. I was told nothing of those findings. Only that my RH Factor was elevated. I do plan to take them to my Rheumatologist on the 21st to see if any of this fits together nicely so that someone can make a diagnosis of what is ailing me and start making me feel better. Anyone know why or what those results could mean?? Thank you!!
    jsieleman75 11 Replies
    • January 5, 2011
    • 07:12 PM
    • 0
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