Still No Definitive Diagnosis

Discussion in 'Fibromyalgia Main Forum' started by chaps, Jan 12, 2008.

  1. chaps

    chaps New Member

    In August of 2006, I had two days of flu symptoms, after which I had severe fatigue. The fatigue subsided after another few days, but never went away completely. In December 2006, some new symptoms entered the fold. They included:

    - General muscle weakness/fatigue, particularly noticed in the forearms and throat, nevertheless present in all other muscles of the body.
    - Tingling in the fingers of the left hand and SOMETIMES the foot. Sometimes, same noticed on right side, but mild. This tingling is occasional and the least prominent of all the symptoms.
    - Interrupted Sleep, always wake in the middle of the night and have trouble falling back to sleep.
    - Occasional pain in lymph nodes in abdomen.
    - Muscle pain in lower back and lower abs, particularly in areas previously compromised by hernia surgery or previous lower back problems.
    - Muscle stiffness after resting or holding in same position for period of time.
    - Post exertional malaise. Sometimes exercise makes me feel better, but if I overdo it, I pay the price.
    - Infrequent "jumping nerve" sensation that feels like it's in the esophagus when waking at night (possible heart palpitation?. Lasts just 2 or 3 seconds. Happens once every 1-2 months.
    - Symptoms go away almost entirely whenever I have a herpes outbreak.
    - Symptoms wax and wane, I'll have a couple of good weeks where I think I'm getting better, but then they return for a week or two.

    I saw a gastroenterologist in November of '06 who performed a coloscopy, endoscopy, and middle bowel test to find the source of the abdominal pain. All tests turned up nothing.

    Also in January of '07, I saw an infectious disease specialist who ordered lots of bloodwork. He said it all came back negative and he referred me to a neurologist.
    The neurologist ordered an MRI to test for possible MS. This test came back negative and he referred me back to the infectious disease specialist. The IDS said he thought I had CFS at that point and wanted to prescribe Zoloft, but I would have none of that. I thought it was suspect that he told me that the forearm weakness and tingling were not symptoms of CFS, yet that's what his diagnosis was.

    I went to a holistic person after that, he had me try lots of supplements over the course of several months that didn't work. Under this person's care, I was tested for Lyme disease and systemic Candida. Both were negative.

    I returned to my primary care physician who basically threw up his arms and said he can't find anything wrong and suggested that it was all in my head.

    I tried going to the Mayo Clinic, but this place was out-of-network for my ins. co. so instead, by the end of November, '07 I decided to go to the Cleveland Clinic. I just so happens that by this time, I was experiencing severe sinus symptoms due to seasonal allergies here in Florida and some breathing symptoms as well. The GIM doc there ordered ultrasound of abdomen (looking for sources of abdominal pain)and gave referrals to:

    Ear, nose, and throat specialist. (performed CT Scan of sinuses)
    Allergist (Basic breathing test and allergy test)
    Pulmonary Specialist (More extensive breathing test)
    Cardiologist (Holter Monitor for Heart Palpitations)
    Neurologist (EMG test)
    Rheumatologist ($20K worth of blood work)
    Gastroenterologist (ordered CT Scan to find possible causes of abdominal pain)
    Infectious Disease Specialist (did no tests at all, just informed me that she didn't think that I had CFS because my symptoms were not severe enough [???]).

    What I know from all of those tests are:

    Heart and lungs are OK. Breathing problems and most of sinus problems were cleared up from taking Singulair, an antibiotic, and performing a sinus rinse.

    As far as the fatigue, muscular, tingling, and sleep symptoms are concerned, I'm no further than I was a year ago.

    Although the neurologist performed an EMG and the rheumatologist ordered all that bloodwork, they will not talk with me over the phone to answer questions about these test results and about where we go from here because they require an appointment in their office to do this. I've already made 6 trips to the Cleveland Clinic. I do not have the money to make additional trips just to get my test results, plus since my insurance deductible went back to $3000.00 as of Jan. 1st, I don't have the money to pay for the office visits. All the nurses have told me over the phone were that the tests were negative.

    My questions for the neurologist are:

    Why did you perform only an EMG? Does that help to detect MS? Why did you rule out MS, just because the MRI a year ago was negative? Why did you not order a spinal tap?

    Questions I would ask the rheumatologist are:

    Are you ruling out Fibromyalgia and why? Out of all the bloodwork you did, the only thing you found was that the sed rate was slightly elevated. Where should I go next with this? How do you diagnose fibromyalgia?

    Question for the infectious disease specialist would be:

    What about Lyme disease? The blood tests that the holistic guy ordered only looked at Lyme "teiters." What does that mean? Shouldn't I have a more reliable test for Lyme, such as the Igenex Western Blot? What about ME? How do you test for and diagnose that?

    After a year and a half of all of this stuff, I still have no diagnosis. I don't know what to do next. I think that I have either Lyme disease, Fibromyalgia, CFS, or MS, but don't know which.

    Any suggestions would be appreciated. I'm really frustrated and disgusted with the medical community. It is obvious that their main priority is revenue generation, they don't give a rat's ass about helping or curing people. Are they any doctors who care and read this forum?

    Chaps
  2. mollystwin

    mollystwin New Member

    Chaps you have really been through the ringer!!! You have so many sypmtoms that I have had over the years!! My numbing almost disappeared after removing aspartame from my diet.

    I have lyme disease, systemic candida, hypothyroid and mycoplasma. I have sucsessfully treated my heavy metal issues and c. pnuemonia.

    All of your symptoms could fall under the category of either lyme or heavy metals. Or both. It seem that you have been tested for everything else!!

    I think you are correct that you should get an igenex test. You can order one online and have a doctor write an order to get blood drawn and mail it in yourself. Or you can find a LLMD who could test you and then interpret the test for you. It's important to get a proper interpretation of the test.

    My LLMD practices preventive medicine. His wife has lyme, so he started treating lyme too. On his first visit he takes a hair sample for analysis. I was off the charts for several metals including mercury. I was also deficient in several minerals. So I had my fillings removed and had a urine challenge which showed lots of metals as well. After 15 DMPS IV's my metal levels are now in the green range.

    Many LLMD are now looking for heavy metals too. They discussed it extensivly at the Lyme conference in 2007. The symptoms are the same as lyme disease and contribute to a poor immune system. It appears to be a contributing factor in why some lymies do not seem to recover.

    Maybe others here will have more suggestions for you too.

    Good luck!!!

    dar
  3. Katy47

    Katy47 New Member

    You have some good questions. Let me say I believe, though, your testing has been adequate and your doctors have been barking up the wrong trees.



    My questions for the neurologist are:

    Why did you perform only an EMG? Does that help to detect MS? Why did you rule out MS, just because the MRI a year ago was negative? Why did you not order a spinal tap? GOOD QUESTION, I WENT THROUGH THE SAME THING WITH MY NEUROLOGIST! NEG MRI AND TOO BROKE FOR A SPINAL STUDY.

    Questions I would ask the rheumatologist are:

    Are you ruling out Fibromyalgia and why? Out of all the bloodwork you did, the only thing you found was that the sed rate was slightly elevated. Where should I go next with this? How do you diagnose fibromyalgia? DOCTORS HAVE DIFFERENT CRITERIA, IF ANY! FIRST YOU NEED A THOROUGH IMMUNE WORKUP. THE FIBRO & FATIGUE CENTERS (FFC) THROUGHOUT THE COUNTRY WILL ORDER THE RIGHT AMOUNT AND KINDS OF TESTS TO DETERMINE YOUR IMMUNE DYSFUNCTION. I WOULD EXPECT YOU TO HAVE A LOW NATURAL KILLER CELL COUNT, WHICH IS A MARKER OF IMMUNE IMPAIRMENT ALONG WITH OTHER OF-COUNTS SUCH AS YOUR SED RATE, CD57, LOW WHITE CELL COUNT, LOW IMMUNOGLOBULINS (IGG, IGA, IGM, ETC.) FFC DOCS CAN DOUBLE AS INFECTIOUS DISEASE SPECIALISTS AND IMMUNOLOGISTS - AT LEAST MINE IS GOOD AT THAT. I'M IN DALLAS. WATCH OUT FOR SOME OF THE OTHER DOCS THOUGH AND GET A REFERRAL.

    Question for the infectious disease specialist would be:

    What about Lyme disease? The blood tests that the holistic guy ordered only looked at Lyme "teiters." What does that mean? Shouldn't I have a more reliable test for Lyme, such as the Igenex Western Blot? EXACTLY, AND EVEN THEN DON'T BELIEVE IT IF IT COMES UP NEGATIVE. YOU NEED TO HAVE SOMEONE ON THIS BOARD INTERPRET IT WHO KNOWS -- MUNCH, FOR EXAMPLE. What about ME? How do you test for and diagnose that? ALL OF THE ABOVE. IT'S THE SAME THING AS CFIDS, FM, AND MAYBE EVEN LYME.

    After a year and a half of all of this stuff, I still have no diagnosis. I don't know what to do next. I think that I have either Lyme disease, Fibromyalgia, CFS, or MS, but don't know which. YOU DO! IT'S JUST THE IDIOT DOCTORS YOU'VE BEEN DEALING WITH DON'T EVEN KNOW WHAT TESTS TO ORDER, SO DO YOUR DOCTOR SHOPPING ONLINE HERE AND THEN PROCEED. DO NOT GO TO THE MAYO CLINIC EVEN IF YOU CAN AFFORD IT.

    LYME DISEASE SEEMS TO BE THE ONE COMING UP MOST OFTEN AND SURPRISING PEOPLE WHO HAD THOUGHT THEY WANTED TO CALL THEIR PROBLEM SIMPLY CFS OR FM, SO GET THAT IGENEX DONE SOMEHOW AND SUBMIT RESULTS TO US.

    HUGS,

    KATY
  4. cbs1234

    cbs1234 New Member

    Did you take levaquin, cipro or another fluoroquinolone just before your symptoms began? You have many of the symptoms associated with people suffering from the adverse side effects of these drugs which cannot be diagnosed by docs.
    [This Message was Edited on 01/13/2008]
  5. chaps

    chaps New Member

    to all of you who have taken the time to read my rather lengthy post and for the good suggestions and questions to ask the docs. I'll have to read them again, digest it some more and come up with a follow-up strategy.

    To answer the questions some of you have asked that I can recall right now:

    No, my blood has not been tested for heavy metals, but I do have LOTS of amalgam fillings. Some of them have been covered with crowns, nevertheless there is still amalgam underneath.

    I took cipro once a few years ago, but not immediately before the onset of whatever it is I am suffering from currently. It was also prescribed to me just a couple of months ago for the respiratory symptoms that I was having. It was a 5-day course. It didn't seem to affect the fatigue symptoms one way or the other.

    About the spinal tap...it sounds scary. Are they risky? Are they commonplace? What percentage of the time do complications occur? Are they the same risk as epidural anesthesia used in C-sections?
  6. cbs1234

    cbs1234 New Member

    Did the muscle weakness, tingling, etc coincide with the recent 5 day course of cipro? Cipro has been known to cause permanent peripheral neuropathies after just one dose.
  7. Lichu3

    Lichu3 New Member

    I am sorry despite the money, time, and energy you've put out the lack of a definitive diagnosis.

    It still might be too expensive but can you ask the neurology office for an over-the-phone consult? Your symptoms, to me, are still somewhat concerning for neurologic things, which sometimes take a while to diagnose. You can explain your economic situation.

    No shame in that, I've gotten discounts for family from a major private medical center (for clinic visits) since they had to pay out of pocket there. Most medical centers have a financial assistance office that helps with this. My experience with this particular center was very good; the counselors understood that one does not need to be a pauper to have difficulty with expensive medical bills. Hospitals do it both for altruistic and tax reasons.

    Many people don't know about these offices until they're already owing money. I talked to them before my relative went there.

    Spinal taps are similar to epidurals but instead of putting in an anesthetic they draw spinal fluid out instead. They're not a major procedure. I had one done with minimal side effects (headache for 3 days which I tolerated because the test was important to me).
  8. chaps

    chaps New Member

    CBS 1234 said:

    "Did the muscle weakness, tingling, etc coincide with the recent 5 day course of cipro? Cipro has been known to cause permanent peripheral neuropathies after just one dose."

    CBS, no, the symptoms were coincident with neither the onset nor any relapses. I don’t think this is a Cipro issue. But, if I’m wrong is it possible for these permanent peripheral neuropathies to get worse over time? Over the year-and-a-half that I’ve had these symptoms, they’ve waxed and waned, but I’m not sure that they’ve gotten significantly worse.

    Puddleglum said:

    "I had the tests to rule out other diseases like lyme, RA, Lupus, thyroid, adrenal, hormones, etc...

    On the MS subject...if your MRI did not show any white spots (lesions) then thats probably why they ruled out MS...it would usually show on your MRI (with contrast)...

    A spinal tap is used as the last resort for MS...if your MRI did show a problem, then your dr. should order EP tests, blood work, and a ENG if you are having balance problems...then a spinal tap..."

    The rheumatologist did all those tests, Lupus, thyroid, adrenal, hormones, RA, and they were all normal. The lyme teiters also showed negative, but as others have indicated, Lyme is awfully tricky and it seems to take some real specialization to be able to competently diagnose it. About the possibility of MS, I have had these symptoms for just over a year-and-a-half, and I don’t think they’ve gotten significantly worse. Does MS progress this slowly? I have heard that MS symptoms are aggravated by heat, such as a hot shower, hot tub, etc. Heat does not aggravate my symptoms. Coldness DOES. Does that rule out MS? I have not had any symptoms affecting my eyesight. Does that rule out MS?

    Caledonia said:

    "do you have any "silver" fillings in your head?"

    Yes, as mentioned in a previous post, I have lots of silver fillings. Mercury poisioning is a real possibility. BUT, if my immune system is being compromised, wouldn’t I be catching colds? I haven’t had a common cold for the whole time that I’ve had these symptoms. The only reason I was given antibiotics was because my sinuses were very congested due to allergies. The ear, nose and throat guy said I have lots of congestion but when he stuck the camera up my nose and looked around, he said there was no sign of infection, just congestion. It was the allergist who prescribed the antibiotic just to see if it would help clear up the sinuses. The cipro was prescribed by my primary care generalist because I was having asthma-like symptoms that I started noticing immediately after walking under an oak tree that was shedding all kinds of allergens. The antibiotics did not seem to help or hurt in any way. My sinuses cleared when I started rinsing them twice daily with a neti pot w/saline solution. This helped the breathing symptoms, too.

    "abdominal pain - have you tried probiotics, betaine hydrochloride, digestive enzymes, gluten free, dairy free diet?"

    The abdominal pain does not seem to be in my digestive tract. It seems to be in the muscles, particularly in the area where I had hernia surgery. All the muscles of my body are affected by whatever I have. They either feel tired/sluggish, or they hurt wherever there’s been previous injury, surgery, or current strain due to working out/exercising.

    Lincamp said:

    "Re: the Rhuemy bloods, it would be interesting to know if your blood ANA test was positive or neg. A positive test indicates an autoimmune disease, many of which can cause muscle, joint pain, esophogeal involevement."

    I will ask Cleveland Clinic for printed test results. If myasthenia gravis doesn’t indicate, then how do they diagnose it? I remember seeing a poster on the neurologist’s wall about this disease. I thought if I had it, he’d have found it. Is that what the EMG is for?

    Here’s the only stuff that seemed a little odd about the bloodwork taken by the Rheumy in December ‘07:

    Immunoglobulin G, Qn Serum: 1021 (normal)
    Immunoglobulin A, Qn Serum: 443 (High?) 70-400 normal
    Immunoglobulin M, Qn Serum: 19 (low?) 40-230 normal

    In the blood tests taken in October, ’07, the Westergren sedimentation rate was 26.

    In December of ’06, a blood test was taken in which the doctor told me that one of the EBV antibodies was a little high, indicating more of a chronic level rather than acute, but also said that this doesn’t necessarily mean anything. He said that this could have been due to exposure to mono many years ago, so he passed it off as not being of any significance. Could he have been overlooking something here?
  9. tidings

    tidings New Member

    Dear Chaps,
    Your history/symptoms sound like you have CFS (Chronic Fatigue Syndrome) and it may have progressed to Celiac disease (gluten intolerance)--or vice versa. Would suggest you get tested with a Celiac Disease Panel.
  10. spacee

    spacee Member

    hasn't logged in for over 2 months. Hope this info gets seen.

    Spacee
  11. ellikers

    ellikers New Member

    A lot of what you have written is similar to my experiences too. My "stuff" started with a bout of flu-like symptoms and then the fatigue and then a cascade of other health problems, which, for the most part have been resolved for several years.

    When I hear about muscle fatigue and weakness and soreness and back pain the way you're writing about it sounds very much like fibromyalgia and/or chronic myofascial pain. Especially because you mention issues with past surgeries, your fascia (the tissue that surrounds your organs and muscles and allows for movement) can get inflamed and develop scar tissue that can cause trigger points, tighten muscles, and referred pain from those spots.

    I've had mild fibro symptoms off and on for years (mostly off thank goodness, I have it very mild) but the trigger points in my back, my abdominals, pelvic floor and hips have flared up on and off regardless of the other things "resolving" in my body.

    What might help:
    Seeing a physical therapist that specializes or at least has some experience working with trigger points, folks with chronic pain, FM, etc. They are WAY less expensive than neurological tests and I would have saved $1,000s if I had seen a PT earlier on in my history of body issues.

    PTs (and massage therapists, etc) can perform myofascial release the can get the "locked" muscles of a trigger point to let go, easing pain and getting your body to function with the appropriate muscles.

    I really like the understanding of FM as a "central nervous system pain sensitivity disorder" because that is what current research is showing. It's a hyper-reactivity to stimuli (movement, sights, sounds, smells, etc) that creates in us pain, tension, stress etc that over taxes our bodies and therefore wears us out.

    Just some thoughts! I wish you lots of healing and help.