Discussions By Condition: I cannot get a diagnosis.

Doctor Issues - No Diagnosis

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Mrsdanskin
  • February 12, 2008
  • 06:49 PM

Hello everyone,

I am going to try and make this as brief as possible. I am 32 years ald and up until about a year and a half ago I started feeling fatigue and minor joint pain. The joint pain was most notable in the morning when I first woke up. Since then my symptoms have become increasingly worse. I experience the following:


Fatigue
Joint/muscle aches
Migraines
Numbness/tingling hands
Lower back pain
Neck pain
Mouth sores
Muscle weakness
Eye twitches
Pain/pressure in my ears
Face numbness
Racy Heart
Weight Loss
Stomach PainI think that I may have covered many of my major symptoms. I have had quite a few tests done and have tried to list them and the results below.


Lyme disease - Negative (Been tested 5 times)
Elevated White Blood Count (Consistently for 6 months)
Elevated Neutrophil Count (Consistently for 6 months)
Gastroscopy - Found Stomach Inflammation
Diagnosed with Nephritis
Positive ANA
T3, T4 Abnormally High - Hematologist monitoring - they say it may develop into Hashimoto's Thryoidism (Inflammation of the Thyroid Gland)
Blood in Urine
High Blood Calcium
High Total Cholesterol
Elevated Blood Pressure (144/90)
Abnormal Sleep Deprived EEG
Trigemial Neuralgia
I have been out of work on short term disability and I want my life back. I was not happy with the care I was receiving from my primary care. I was feeling that he was not following up or answering my questions. The following up or not carefully revieiwing my test results was confirmed when he sent the short term disability company a statement that said all I had was a stomache and was on Prevacid and the last time he was me was in October. I was almost denied short term disability because of this but I requested a copy of my medical records which directly conflicted with his statement. I am on Vicodin, Skelaxin, Lidocaine patches, Amitryptiline, Zoloft, Prilosex, and Midrin.

So, I have been seeing a Hematologist, Cardiologist, and a gastroenterologist, and a neurologist. I have yet to meet the neurologist which is frustrating because I made the appointment in October and the earliest they could get me in was January. They then call and had to reschedule my appointment which is now not until April 16! Which means that this has taken 8 months to get in :mad:. I have found a new primary care office but I feel like I have to start all over again. Since, my case is complicated does anyone have any idea about what I should do to prepare for a doctors visit with my new doctor. I do not want to go in with my list of issues and have her focus on one or two of them. I want them to be looked at as a whole because I think they are related. By the way my old primary care diagnosed my with Fibromyalgia which I am not sure of because I have been reading about it and the only thing I could find that fit my symptoms was the pain. Any feedback appreciated and I apologize for the length of this post.

Thank you!

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7 Replies:

  • I'd ask to get thyroid antibodies checked:thyroglobulin antibodiesthyroperoxidase antibodiesTSH stimulating and inhibiting antibodiesThere's a "new" disease out there called Hashimoto's Encephalopathy. It's a rare complication of autoimmune thyroiditis, and you can get it with Hashimoto's OR Grave's. Many patients have normal hormone levels- but their antibodies are elevated.I went undiagnosed for 8 years before it was figured out. I felt like crap much of the time, with many of your symptoms- the worst two being fatigue and migraines. Also, balance problems, feeling drunk, etc...I never had any of the more severe symptoms that can be seen with it (coma, seizures, psychosis). So, I was a "mild" case, but I suspect there are many more people like me out there who are running from doctor to doctor begging to get diagnosed but with no answers...Most doctors have never heard of HE. This is unfortunate, as it responds well to steroids.I hope you get answers soon.
    Anonymous 42789 Replies
    • February 13, 2008
    • 02:58 AM
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  • What were you symptoms before the meds? Its just that some of your meds have a lot of side effects and cloud the issue.
    TerryG 120 Replies
    • February 13, 2008
    • 07:41 AM
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  • What were you symptoms before the meds? Its just that some of your meds have a lot of side effects and cloud the issue. My symptoms were the same except for the racy heart. That is something that is new in the past couple of months. The doctors have no idea why I am getting all of this inflammation. I been tested for the bacteria H. Pylori (not sure if I spelled right) and that test was negative (three times). I have passed out once while I was in CVS and that is why I was given the sleep deprived eeg which came out abnormal but I have yet to get into the Neurologist. Oh, something else that is new is my hair is thinning out. If I keep losing it at this right I will be bald. When I take a shower my hair comes out in long strands and there is enough to braid. It is quite gross and alarming. I had a couple of MRI's over a year ago which the doctors considered normal even though there was some minor findings. I have had a spinal tap and a bone marrow biopsy which both were normal. The hematologist said that there was some immature blood cells but nothing to worry about and she would monitor my blood. I just have a very hard time communicating with doctors because for awhile they were telling me that I was stressed and depressed. Am I stressed and depressed? ***l yeah, but the stress and depression is the result of the illness not the cause. I think that anyone who has to give up almost everything that they love because they do not feel well will become depressed! Thank you all for your feedback. I am sorry for all that you are going through but I have to say I do not feel alone anymore!
    Mrsdanskin 1 Replies
    • February 13, 2008
    • 02:57 PM
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  • Have you been to a dentist? How are your teeth? Sometimes there's underlying teeth & gum infection that can cause these things...
    aquila 1263 Replies
    • February 13, 2008
    • 05:45 PM
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  • You sound like you are definitely having autoimmune issues, and most likely thyroid dysfunction. Whether you get a diagnosis of HE, or thyroiditis, or RA, fibro or a combination, please consider trying a more holistic approach to treating your illness. There are many choices - naturopathy, acupuncture, NAET, homeopathy. I personally recommend NAET as it has helped me and many others on this site. As a certified NAET practitioner I have also seen very difficult patients making positive steps towards recovery. NAET is NOT a quick fix and it will take 15-20 treatments minimum. But it can really make a difference. Please look into it and visit www.naet.com Best wishesDOM
    acuann 3080 Replies
    • February 13, 2008
    • 06:41 PM
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  • Make sure that they also look into Lupus and celiac disease (in addition to HE by checking thyroid antibodies). Celiac can cause mouth sores and lots of neuro symptoms...Often if you have one autoimmune disease, you are at risk for others. So, you need to watch out for others if you get diagnosed with one...I don't understand how it works, but some researchers think that if you have celiac, it can actually lead to thyroid abnormalities. I don't know how they are linked, but it might be something useful to keep in the back of your mind in case your thyroid antibodies are positive: get checked for celiac, too.Sorry you are ill and undiagnosed.It is good that you want your doctor to look at the whole constellation of symptoms instead of one-by-one. I have a feeling they are all connected somehow. Mine were, anyways.
    Anonymous 42789 Replies
    • February 13, 2008
    • 10:48 PM
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  • I think you may have something else going on other to what Im going to suggest.. but it's still a possiblity. When I did read your post thou of symptoms, my thought was possibly fibromyalgia and other stuff going on. By the way my old primary care diagnosed my with Fibromyalgia which I am not sure of because I have been reading about it and the only thing I could find that fit my symptoms was the pain. I have fibromyalgia with chronic fatigue immunity dysfunction syndrome also known as CFS. FM patients (along with CFS patients) DO get many other symptoms with the fibro pain eg sleep issues, headaches and things like IBS etc etc. So seeing you have weight loss and stomach pain.. Im wondering if you have irritable bowel syndrome???? You didnt mention these things but Im wondering if you get a lot of constipation/diarhearrhea at times or both of these? The joint pain was most notable in the morning when I first woke up. That is often the case with fibromyalgia. Also morning stiffness is very common.............. How are you with exercise? Does it make your symptoms in general, afterwards worst?I had a couple of MRI's over a year ago which the doctors considered normal even though there was some minor findings. Can you remember what this minor findings were? Where there elevated numbers of punctuate lesions, particularly in the frontal lobes and subcortical areas?
    taniaaust1 2267 Replies
    • February 14, 2008
    • 01:12 AM
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