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Old 08-20-2007, 08:31 PM   #1
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Unhappy Undiagnosed: Desperate For Help

This is going to be an incredibly long post so it’s probably not for the casual reader. I am a 22 year old male and I’ve been sick for four years now. Not one doctor has been able to figure out what is wrong with me. I have seen a Neurologist, a couple of Endocrinologists, a Physiatrist, a Rheumatologist, a Physical Therapist, several internists, several ENT’s, a couple of Gastroenterologists, a Urologist, a Nephrologist, a Cardiovascular Surgeon, a Psychiatrist, a Dermatologist, and a couple of Pain Management Doctors. I have also been to the Mayo Clinic twice and the Scripps Clinic once. If you think you can help me, please review my history carefully. You could literally save my life. Any thoughtful input is appreciated.

Here are the current symptoms:
  • Sharp scapular pain on the right side
  • Sharp lower back pain
  • Chest pain with bouts of faintness and inability to breathe
  • Had nasal surgery several months ago and still have not healed
  • Recurring tonsil stones
  • Nausea, empty pit in stomach that doesn’t feel better with eating, cramping, excessive flatulence
  • Weight Loss (2004: 163 lbs 2005: 139 lbs 2006: 135 lbs)
  • Inability to gain weight regardless of calorie intake (No eating disorder.)
  • Joints popping out of socket
  • Rashes on joints, intermittently severe; Raised red bumps with severe itching and burning; Itchy skin
  • Hematuria (intermittent); Varied from gross hematuria to microscopic hematuria
  • Extreme fatigue
  • Sharp, stabbing abdominal pain in upper left quadrant
  • Insomnia
  • Muscle twitches
  • Constant urge to urinate and difficulty maintaining stream of urine
  • Shaky
  • Night sweats
  • Panic attacks

Here is a list of current medications:

Medication Dosage (mg) Frequency
Soma 350mg 3x a day
Hydrocodone 10/500 4x a day
Kadian 30mg 2x a day
Albuterol Metered Dose As needed
Xanax 1mg 1x at night
Provigil 200mg 1x a day
Baclofen 10mg ˝-1 / night

And here is the story of how I got to this place:

Summer 2003
At the time, I would have considered myself healthy. I had started to grow out of my asthma that I’ve had since I was two. I was exercising regularly and eating healthy. There were several major stressors that happened at this point. My mother and I moved out of the house that I grew up in and moved across town. I graduated from high school. My serious girlfriend and I went on a trip to California and when I got back, I found out that my mom had had a nervous breakdown while I was gone. That’s when her serious health problems began. At the end of the summer, my girlfriend was going out of state for college. I found out that she had been cheating on me again, and I broke up with her.

Fall 2003
I started college. My eyesight up to this point had been perfect. I had never needed glasses or contacts. In my first semester, I was in a big lecture hall and I started to notice that I couldn’t read the board clearly. Everything was blurry. And then my right knee started to hurt. At first, it was just a small pain but it worsened as the weeks progressed. It got to the point where I could barely stand to have anything touching my knee. I couldn’t sleep at night because I couldn’t even rest my knee on the bed. I saw my primary care doctor and talked to her about it. Her response was to give me Cymbalta. Not only did it not do anything for the pain, but it made me feel even worse. I felt more depressed and completely zoned out. I was referred over to a Rheumatologist. I saw his PA and was given a physical exam. He had no idea what was causing the pain and gave me a prescription for Soma so I could sleep. I saw an Orthopedic Doctor who took an x-ray of that knee and said that everything looked fine. I started to lose weight.

2004
Throughout 2004 I lost more and more weight despite the fact that I was eating constantly. I had started out at 163 lbs and was down to 139 lbs by the end of the year. The pain migrated from my knee to under my right scapula. My knee no longer hurt but the scapular pain grew worse and worse. I also started feeling pain in my lower back.

Spring 2005
In January, my mom gets sick and is hospitalized for four days. During this time, I start to urinate blood. It is not a little bit of blood, it is a toilet bowl full of red. I switched primary care doctors and got referred for many tests. In February, the blood in my urine is measured at 3+ and I am tested for Lyme Disease, which comes back negative.

March 2005
I have a CT Pelvis with and without contrast. The impressions are: 1) Unremarkable appearance and pelvis. 2) No enlarged lymph nodes seen within the pelvis. I also undergo a CT scan of my abdomen. The radiologist who read the film wrote in his report that he suspected I had a Bochdelak hernia that had enveloped a portion of my kidney. There are no other abnormalities detected. I also have an MRI of the upper arm to determine the cause of the scapular pain. There were no marrow or soft tissue abnormalities. No evidence of a rotator cuff tear. The biceps tendon is in normal location with no evidence of tear. No labral tear. I was referred to a Cardiovascular Surgeon to follow up on the possible Bochdelak hernia. He looked at the film and said that he didn’t see anything but he wanted to order a chest x-ray to get a better look.

April 2005
I undergo a PA and Lateral Chest X-Ray. The impressions are: 1) “No confluent infiltrate or pleural effusion or diaphragmatic mass or hernia.” 2) “4mm nodular density in the right upper lobe probably related to pulmonary vascularity end on rather than a nodule. It could reflect a calcified granuloma as it is fairly dense for its size.”

May 2005
My blood work shows a normal electrophoretic pattern. I am also tested for glomerular basement membrance, which comes back negative. I test negative for anti-neutrophil antibodies (ANCA). I test negative for Hepatitis C and B. A urinalysis reveals atypical urothelial cells and “microhematuria with bacteriuria and acute and chronic inflammation.” The comment says “The cytologic findings noted in this 19 year old male may be reactive (related to inflammation and/or infection, or other causes such as bladder trauma, vigorous physical activity, postsurgical trauma, calculus) or secondary to low-grade papillary neoplasm.” At the end of May, I have an MRI of the cervical spine. The results show that I have an unremarkable cervical spine with no marrow lesions. They also show that I have a “minor central bulge C5-6 with minimal thecal sac effacement.” There is no neural impingement. A few days later, I have an MRI of my abdomen with and without contrast. All of the internal organs are unremarkable and no diagnostic abnormality is found.

June 2005
I have a Right Brachial Plexus MRI. The brachial plexus appears normal in course, morphology, and signal. There is no soft tissue mass or adenopathy identified. I am referred to a urologist for the blood in the urine. In the middle of June, I undergo a Cystoscopy. The conclusions are as follows: “Anterior urethra demonstrated no strictures or lesions. Prostatic fossa showed normal configuration of the prostatic lobes. There was no significant hypertrophy. Bladder mucosa is normal and ureteral orifices were in normal position. There was no evidence of tumors, stones, fistuli, foreign bodies, CIS or diverticuli. Bladder did not have significant cellules, trabeculations.” The only abnormal thing detected is “possible mild right hydro” and “significant distention of transverse colon.” My blood is tested for inflammation with a Sed Rate, Westergren, the result is a 1 and the reference range is 0-15. The urologist gives me a referral for an IVP with tomograms. The findings: “Scout radiograph and scout tomogram demonstrate no renal or ureteral calculi. No definite bladder calculi seen. There is a tiny 2 mm calcific focus lying over the left aspect of the bladder. This probably more laterally located in the ureter and probably reflects a small phlebolith.” The overall impression: “Normal IVP without hydronephrosis or hydroureter or persistent filling defect.”

July 2005
I am referred to a Physiatrist who did a physical exam and then had me come back in to do an EMG. He performed the EMG and then within 10 minutes of finishing it, he looked at my mother and me and told us that he believed I was having the onset of FSH Muscular Dystrophy. The EMG showed some latency and “mild myopathic recruitment of the right infraspinatus muscle.”

August 2005
More blood work reveals that my CPK is 84 in a reference range of 30 - 195. My aldolase is 4.1 in a reference range of 1.2 - 7.6. The physiatrist is unable to refer me for the DNA test to rule out MD so I had to go see a Neurologist. He did a physical examination and thought that everything looked fine. He referred the DNA test for Muscular Dystrophy and the blood was sent out. The first time it came back inconclusive so I had to give another sample. It finally came back and was negative. The Neurologist also gave me a referral for an MRI of the brain with and without contrast to make sure that I don’t have MS. The results were negative for MS but showed that I had a large retention cyst in my right maxillary sinus. I also have another PA and Lateral chest x-ray. The findings: “The heart, mediastinum, trachea, and hilar regions are unremarkable. There are no confluent infiltrates or pleural effusions. Nodular density adjacent to the right hilum is most likely vascular. Bones demonstrate no abnormality.”

September 2005
I am referred to a Nephrologist. I get more blood work done. In the renal function panel, the only thing that comes back outside of the reference range is Albumin, which has always been high. I am tested for Hepatitis B again, which comes back negative. I am tested for HIV, which comes back negative. I am tested for Anti-Nuclear Antibodies (ANA), which comes back negative. I am tested for Immunofixation Serum. The M-Spike isn’t present, and I test negative for both heavy and light chains. My red blood cell count and white blood cell count are both normal. My lymphocytes come back high at 47.9 in a reference range of 24-44. I am tested for Vitamin D levels and the result is a 37 out of a reference range of 15-60. At the end of September, I go in for a CT Chest with and without contrast. The results are compared with the chest x-ray in April that shows a granuloma. Findings indicate no mass, no lymphadenopathy, and no effusions. There are no abnormalities.

October 2005
Under the working diagnosis of fibromyalgia, I am referred to physical therapy to try to work through my pain. I undergo physical therapy for several weeks (6+) but feel no better. The physical therapy actually exacerbates the pain. I am also referred to a gastroenterologist to follow up on my diarrhea/constipation. He orders a colonoscopy.

November 2005
I undergo a colonoscopy. The post-operative diagnosis reads as follows: “Normal colonoscopy to the cecum, normal appearing terminal ileum. Terminal ileal and random colon biopsies obtained.” Examination of the entire colon revealed no evidence of any mucosal inflammation, diverticulosis, or polyps. The results of the first biopsy are: “Section shows portions of small bowel mucosa without ulceration or alternation of the mucosal villi. No granulomas or parasites are identified. There is no thickening of surface epithelial basement membranes and no surface exudate is noted. Glands and surfaces are lined by benign epithelial cells. The stroma shows two benign lymphoid nodules with germinal centers. No dysplasia or malignancy is identified. Portions of benign non-inflamed bowel mucosa showing mildly reactive lymphoid tissue.” The results of the second biopsy are: “Multiple random portions of colonic mucosa show no ulceration or crypt abscess formation. No granulomas or parasites are identified. There is no thickening of surface epithelial basement membranes and no surface exudate is noted. Glands and surfaces are lined by benign epithelial cells. The glands show mild increase in intraepithelial lymphocytes and an increase in mitotic activity of mucosal lining cells. There are scattered lymphoid nodules with reactive germinal centers. No neutrophil infiltration of either stroma or glands is noted. There is no dysplasia or malignancy is identified. Multiple portions of benign colonic mucosa showing focally reactive lymphoid tissue.”

December 2005
I have an MRI of the thoracic spine without and with contrast. Findings: “No significant disk herniations. No evidence of spinal stenosis. Disk space and vertebral body heights are well-maintained. Spinal cord is normal. Normal alignment. No enhancing lesions.” Also in December I see my first pain management doctor and I am started on morphine and hydrocodone.

January 2006
After getting nowhere locally, my mother and I decide to head down to the Mayo Clinic in Scottsdale, AZ. There I see an Internist who does a very thorough examination and refers me for several tests, including another EMG. Here are his impressions:

“Complete blood count is normal. B12 and folate levels are also within normal range. Liver, kidney, and electrolyte tests were notable for a slightly low glucose at 68 and a minimally high AST at 51 that is of doubtful significance. Minimally increased INR with otherwise normal total protein and normal bilirubin with a normal PTT. Von Willebrand’s study shows no signs of von Willebrand’s disease. Vitamin D level is notably low at 15 with a normal total serum calcium at 10.1. Random insulin level was slightly high at 19 at the time of a blood sugar of 68. C-peptide levels within normal range.

Autoimmune evaluation shows a normal double-stranded DNA, ENA, CRP, and Lyme disease serologies. Futhermore, serum IgA, IgM, and IgG are within normal range. Whipple’s PCR is negative. Endomysial and transglutaminase antibodies were also negative as well as gliadin antibodies.

X-rays include a normal thoracic spine x-ray. Double contrast stomach x-ray shows no hiatal hernia, fleeting gastroesophageal reflux that is quickly cleared that should be of doubtful significance, otherwise normal appearance of the esophagus, stomach, and small bowel.

EMG of the upper right extremity was normal with no signs of cervical radiculopathy or neuromuscular disease.”

“He is tender over the medial and inferior aspects of the right scapula. There is also paraspinous tenderness along the cervical spine and midthoracic spine. He is also tender to palpation over the trapezius muscles. He also describes this over upper extremity joints laterally; even with light stroking, he describes a hyperesthesia over the back and knees, in particular. Normal straight leg raising, however.”

“The urinary porphyrins came back with very minimal elevation in the coproporphyrin. This pattern can be consistent with a very mild hereditary coproporphyria or variegate phorphyria, but it is thought more likely to just simply represent a benign stimulation of the heme-forming system by stress such as medication or occasionally by alcohol. My suspicion is that he does not have porphyria.”

In the blood work, my prothrombin time was 14.8 seconds with a normal range of 11.7 - 13.6. I tested negative for ENA antibodies. The doctor’s number one impression was hyperesthesias and diffuse myalgias. “I suspect fibromyalgia and visceral hypersensitivity. This is likely exacerbated by an underlying anxiety disorder with a markedly disturbed sleep pattern.”

February 2006
I follow up on the Mayo visit with a visit to a local endocrinologist. She checks my Vitamin D 1,25-Dihydroxy and it comes back normal. My PTH, intact and my serum calcium are normal. My glucose level at 2 hours in to the test is low at 68 in a reference range of 70-140. My TSH comes back low at 0.59 in a reference range of .70 - 6.40. My cortisol is elevated at 25.9 out of a range of 4.0 - 22.0. Free T4 comes back normal. All the insulin tests come back normal. Vitamin D, 25-Hydroxy comes back out of range at 17 in a normal range of 20-100.

To Be Continued...

 
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Old 08-20-2007, 08:32 PM   #2
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Young&Suffering HB User
Unhappy Re: Undiagnosed: Desperate For Help

Continued From Above/Below/Original Post in this thread

March 2006
I go and see a different endocrinologist. More blood work ensues. A test for ASCA IgG comes back negative. A test for ASCA IgA comes back negative. I test negative for Inflammatory Bowel Disease (ANCA-IBD). TNP-Screening test is negative. Tests of total testosterone and TSI come back normal. My % of free testosterone comes back low at 0.88% in a range of 1.1 - 2.8. The Celiac Disease Panel comes back negative. I am again tested for Gliadin Ab IgA, which comes back normal. The test for IgA serum comes back low at 67 in a range of 81-463. The Tissue Transglutaminase test comes back negative. The Lactoferrin Stool test comes back normal. My TSH comes back suppressed at 0.31 out of a range of .70 - 6.40. My Free T4 is in normal range. The prolactin test comes back normal. Tests for Luteinizing Hormone, FSH, Anti-Thyroglobulin AB, Anti-TPO Antibody, and Calcitonin Serum all come back normal.

April 2006
I see a different internist and get more blood work done. My T3 Uptake comes back at 34.7 in a range of 25-35. My TSH comes back low again at 0.57 in a range of .70 - 6.40. I am again tested for Westergren Sed Rate, Anti-Thyroglobulin AB, Anti-TPO Antibody and Free T4. All of those tests come back within normal range. I do a 24-hour urine drop to get my porphyrins tested. The tests for uroporphyrin, coproporphyrin, and total porphyrins came back in normal range. The tests for heptacarboxyporphyrin, hexacarboxyporphyrin, and pentacarboxyporphyrin came back with results “below reportable range for this analyte.” The urine is also tested for Delta ALA and Creatinine, both of which come back normal. I get tested for PNH with Red Cell CD55 and Red Cell CD59, both of which come back normal. Tests of ALA Dehydratase and PBG-D come back normal.

May 2006
I see a different gastroenterologist and have an endoscopy performed to rule out malabsorption/figure out why my weight loss continues. The esophagus, stomach, and small bowel were all examined and no abnormalities were seen. Here are the findings of the biopsy: “The superficial epithelium is intact. Villi are normally formed without evidence of blunting or fusion. The lamina propria demonstrates normal numbers of mononuclear cells. No acute inflammation or granulomata are identified. Crypts are intact with normal Paneth and goblet cells. No cellular atypia is identified.”

The blood work comes back almost entirely normal. The Total Protein is high at 8.2 out of a range of 6.0 - 8.0. My Cholesterol is low at 139 out of 140-200. My white blood cell count is within normal range, but on the low side. My prothrombin time is within normal range. The test for PTT comes back normal.

I see another endocrinologist, and he orders more blood work. The test for Gastric Parietal Cell AB comes back negative. My Free T3 is normal at 391 in a range of 230-***. My TSH is suppressed again at 0.35 out of a range of 0.70 - 6.40. My Free T4 is 1.4 in a range of 0.8 - 1.8. Luteinizing Hormone comes back at 1.7 in a range of 1.5 - 9.3. My Total Serum Estrogen comes back out of range at 149 out of a range of 130 or less. A test of IGF-1 (Somatomedin-C) comes back normal. I test negative for both Antiphosphatidylserine IgG and IgM. I do another 24 hour urine drop and it gets tested for histamine, which comes back normal. My Tryptase comes back at 2 out of a range of 2-10. My Total Testosterone is in normal range but my percent of Free Testosterone still comes back low at 1.06 out of a range of 1.1 - 2.8. Vitamin B-6, Plasma comes back in normal range. FSH, Vitamin B12, ACTH, and Cortisol all come back normal, though cortisol is again on the higher side. Vitamin A is out of range at 37 in a range of 38-98. Vitamin B1, Plasma comes back normal, as does Zinc, plasma. Serotonin, Blood comes back in normal range. I am also tested for Heavy Metals in my blood. It comes back negative.

June 2006
The endocrinologist gives me a referral for a Gastric Emptying Scan. Findings for the solid emptying scan: “42% gastric emptying was demonstrated at 60 minutes. The T ½ time is 66 minutes. The T ½ time is within normal limits.” Findings for the liquid emptying scan: “83% of gastric emptying was demonstrated in 60 minutes. The T2 time was 18 minutes. No evidence of obstruction suggested. Normal gastric emptying examination.”

I also have an Abdominal Ultrasound performed. Findings: “Liver is homogeneous in echotexture. No intra or extrahepatic biliary dilatation. Gallbladder is normal without stones, adjacent fluid or wall thickening. Pancreas, limited evaluation, unremarkable. Common bile duct measures 1.6 mm. Right and left kidneys measure 11.5 cm and 11.2 cm in length, respectively. No hydronephrosis, renal mass, or suspicious calcification. Spleen is homogenous and normal size. Aorta is nonaneurysmal. Inferior vena cava and retroperitoneal structures appear normal. Normal examination.”

July 2006
I am referred for a HIDA scan with CCK. The result was “Gallbladder ejection fraction 91%.” I also undergo a Thyroid Uptake and Scan. Findings: “6 hour images show an asymmetric gland, right lobe is larger than the left. A discrete mass is not seen. 6 hour uptake is 10.2%. 24 hour uptake is 20.9%. Both are within normal limits.” Impression: “1) Asymmetric gland, right lobe is larger than the left. While a discrete mass is not seen, potentially there could be a space occupying cold nodule in the upper pole of the left thyroid lobe giving this appearance although is felt to be unlikely. Correlation with thyroid ultrasound is recommended. 2) Normal 6 and 24 hour uptakes.”

August 2006
I go in for the recommended thyroid ultrasound. Findings: “Right thyroid lobe is 5.9 x 1.8 x 1.8 cm. The left thyroid lobe is 4.9 x 1.6 x 1.3 cm. This does correlate with the asymmetry seen on recent I-123 scan of 7/17/06. There are no nodules. Color Doppler imaging was normal. The isthmus is 4 mm.”

September 2006
More blood work from the endocrinologist. TSI comes back at 98 in a range of 125 or less. Free T3 is high at 437 in a range of 230-***. TSH is normal at 0.95 in a range of 0.4 - 5.5. Free T4 is normal at 1.4 in a range of 0.8 - 1.8.

October 2006
I am tested for Chromogranin A. The result is normal at 21.6 out of a range of 36.4 or less.

November 2006
I see a different gastroenterologist who says that the first doctor performed the endoscopy wrong and he wants to do it right. He performs a push-on endoscopy and takes biopsies from everywhere. The bile drainage biopsy has the comment of: “8 cc’s of green thick cloudy fluid are prepared by the CytoPrep tech as a cytospin slide for review by the Pathologist. Significant background amorphous material is present. No definite calcium bilibrubinate or cholesterol crystals are seen.” The biopsy of the small bowel has the following comment: “Villi are normally formed without evidence of blunting or fusion. The lamina propria demonstrates normal numbers of mononuclear cells. No acute inflammation or granulomata are identified. Crypts are intact with normal goblet and Paneth cells. No atypia Is identified.”

December 2006
My throat starts to hurt and I notice that my tonsils are swollen. I also start developing tonsil stones, which hurt and block part of the airway. I go in to see an ENT. He examines me and says that he cannot see up one of my nostrils. I tell him about the retention cyst and he orders a CT scan of the sinuses. The findings are as follows: “The maxillary sinuses are notable for almost complete opacification of the right maxillary sinus due to a large maxillary sinus retention cyst. No substantial change. Mild left maxillary sinus mucosal thickening. Infundibulum appears patent. Right appears partially opacified.

The ethmoidal sinuses are notable for mild mucosal thickening. Ethmoid fovea intact. The front sinuses are clear. The sphenoid sinuses are notable for mild mucosal thickening. The mastoid sinuses are clear. The nasal septum appears to exhibit mild-to-moderate leftward nasoseptal deviation. Associated small spur.”

That ENT doesn’t deal with retention cysts so I am referred to another ENT in the same group. He takes a look at the test results and says that we need to remove the cyst and fix the deviated septum.

January 2007
I go in for the nasal surgery. I have the worst few nights of my life. It drags into weeks and months. The biopsies come back. The biopsy of the contents from my right sinus cavity: “Multiple fragments of respiratory mucosa with moderate chronic sinusitis. The chronic inflammatory cell infiltrate in the submucosa is composed of lymphocytes and rare eosinophils. Minor salivary gland tissue and unremarkable bone. The biopsy of the contents from my left sinus cavity: “The lamina propria of the respiratory epithelium contains a moderate chronic inflammatory infiltrate composed of plasma cells, moderate numbers of eosinophils and lymphocytes. Also present are fragments of bone and minor salivary gland tissue.”

April 2007
I get an EKG at my internist’s office. It comes back normal. The ENT orders blood work to determine my allergies. IgE comes back high at 191 out of a range of 0 - 114. I am highly allergic to cat dander, dog dander, Bermuda grass, redtop grass, A. Tenuis, olive tree, mugwort, and Russian thistle. Also, I am allergic to peanuts and walnuts. They start me on allergy drops.

May 2007
My nose isn’t healing at all. My tonsils are still inflamed and I’m still getting tonsil stones. I go and see a new internist. He does an EKG and it is normal. He orders blood work to test for Reiter’s disease. I test negative for the HLA-B27 Antigen. My calcium is high at 10.5 out of a range of 8.6 - 10.2.


It is now August. My nose is still not healed. The ENT keeps telling me to take Nasonex or Astelin but I’ve already had a very bad reaction with them. I went and saw a different ENT and he told me that my sinuses are very dry and that it could take a long time for dry sinuses to heal. He recommended that I start dropping Ponaris (a mixture of oils) up my nose to moisturize the passages. He also said to quit taking any antihistamines, which is in direct conflict with what the first ENT said. Thus far, I have had a bad reaction to the Ponaris including abdominal cramping, sore throat, and feeling like I’m getting a cold.

All of the other problems continue. I have a lot of gastrointestinal discomfort. I still have the scapular and lower back pain. I have stopped losing weight but I look disturbingly thin. I have been unable to gain any of the weight back. I have not urinated blood in over a year.

Some of the problems were not documented. There have been periods in between all of this where I have gotten severe rashes on my elbows, knees, and ankles. It only happens on the joints and it is very heat sensitive. Exposure to heat or sun makes the rashes flare up even worse. It is intermittent and comes in bouts that last several weeks. The rashes themselves are red, bumpy, and raised off of the skin. I went and saw a Dermatologist and he treated me like I was a child. I was 21 at the time and he literally told me that “mommy must have changed the detergent or soap.” Nothing had been changed. I’d been using the same soap AND detergent and I wasn’t exposed to anything new. He gave me some steroid cream to put on the rashes and told me to come back in two weeks if they were still there. I used the cream, which seemed to melt away layers of the skin, but of course the rash was still there two weeks later. I went back in and he was even more rude and dismissive. Nobody has ever been able to explain what the rashes are or why they occur.

I have also had many nosebleeds during all of this. When I get a nosebleed, it really bleeds and I have trouble getting it to stop. This has happened both before the nasal surgery and after.

The pain has continued throughout this entire period and if anything has worsened. It interferes with my life on a daily basis. I have come to a point where I no longer know what to do. All of the doctors seem to be clueless or too apathetic to even try. That is why I’m putting this out there; just in case someone has experienced this or knows someone who has been through this and can help me find the answers.

I have obviously undergone many, many tests and could not possibly list every result here. If you are aware of any tests not mentioned above, please let me know and I will look over the results to see if the test has been done and I will post the results. Also, I have pictures of the rashes. If anybody needs to see them, let me know. Thank you so much for your time and any help you can give me.

Last edited by Young&Suffering; 08-20-2007 at 08:34 PM.

 
Old 08-21-2007, 12:01 AM   #3
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Re: Undiagnosed: Desperate For Help

I admire the way you have meticulously documented your ordeal.
I hope someone here can give you important pointers.

The first thought that came to my mind was Celiac Disease - but I see that you have already been tested for it.

I have been going through numerous ailments myself for the past almost 3 years and am still not diagnosed, so in many ways I can relate to you.

I will only say this - you are your own best advocate. Never give up looking for answers.

 
Old 08-21-2007, 10:05 AM   #4
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Re: Undiagnosed: Desperate For Help

My first thought was also Celiac.

I might have missed it, but I didn't see if you were tested for heavy metal toxicity at all or not. A lot of the symptoms you're dealing with can be caused by high levels of heavy metals, mercury coming to mind first. It's worth considering.

Please keep us posted.

 
Old 08-21-2007, 10:27 AM   #5
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Re: Undiagnosed: Desperate For Help

This is what I would do. Despite the fact that tests for Celiac disease have come back negative, I would try a gluten-free diet. I would also try to eliminate cow's milk in all of its forms. You might want to read the book "Hungry for Answers" which is available online but not from bookstores (and no, I don't get any proceeds).

I'd investigate Fibromalgia and Chronic Fatigue Syndrome. I agree with your doc that's a definite possibility.

I'd keep a vaporizer/humidifier running in my bedroom.

Tell me about your diet and your lifestyle.

Last edited by index.html; 08-21-2007 at 02:24 PM.

 
Old 08-21-2007, 01:02 PM   #6
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Re: Undiagnosed: Desperate For Help

Quote:
Originally Posted by Nyxie63 View Post
My first thought was also Celiac.

I might have missed it, but I didn't see if you were tested for heavy metal toxicity at all or not. A lot of the symptoms you're dealing with can be caused by high levels of heavy metals, mercury coming to mind first. It's worth considering.

Please keep us posted.
I have in fact been tested for heavy metals and everything came back negative.


Quote:
Originally Posted by index.html View Post
This is what I would do. Despite the fact that tests for Celiac disease have come back negative, I would try a gluten-free diet. I would also try to eliminate cow's milk in all of it's forms. You might want to read the book "Hungry for Answers" which is available online but not from bookstores (and no, I don't get any proceeds).

I'd investigate Fibromalgia and Chronic Fatigue Syndrome. I agree with your doc that's a definite possibility.

I'd keep a vaporizer/humidifier running in my bedroom.

Tell me about your diet and your lifestyle.
Even thought almost all of the doctors said there was no way I had Celiac, one of the doctors recommended I try a gluten-free diet, which I did. I found that my gastrointestinal symptoms actually worsened during that period.

I have looked into both Fibromyalgia and CFS since that's what most of the doctors have come back with. It does explain some things such as diffuse tenderness, chronic pain, and the constant fatigue. But it also cannot explain the rashes on the joints, the blood in the urine, or the severe weight loss. From all that I've read, I was under the impression that Fibromyalgia is helped when the individual exercises. I have tried physical therapy and exercise and it just made the pain worse. Can pain from fibromyalgia be absolutely crippling and debilitating? I also found that I don't fit the usual fibromyalgia sufferer.

I've been seriously considering a vaporizer and/or some kind of air purifier but I'm not sure of the effectiveness of either. I also have a lot of problems breathing in thick air. I don't know if it stems from my asthma, but my lungs seem to be very sensitive to thick, humid air. I have trouble drawing enough breath. But I'm sure that the extra humidity would help moisturize my nasal passages and probably cut down on the nosebleeds.

As for my diet and lifestyle, neither are what they used to be. I used to eat healthy and now I just eat to survive. I am hungry almost all the time. I'm not constantly eating fast food, but I certainly indulge more than I used to. For the most part I still order healthy things like grilled fish and salads when I make it out to restaurants. My lifestyle was never crazy. I never went out and partied or did drugs. I had a small group of friends and would just hang out or go see a movie or go bowling. Now my lifestyle is strictly sedentary. I've tried many times to do the things I used to but I find I can't. I can't sit in a movie theater for too long or else everything really starts to hurt. The last time I went bowling I literally couldn't walk for two days afterwards because the pain was so intense. I can't exercise or do anything remotely physical without exacerbating my symptoms. When school is in session, I do walk on and across campus carrying my book bag, but I would say that's as physical as I get now. I don't stay in bed all day though. If I stay in bed too long, the pain is worse than it would be if I had gotten up. So I try to read, play video games, watch movies and peruse the internet to distract myself from the situation I'm in. I also occasionally go to concerts.

Thank you all for your responses.

 
Old 08-21-2007, 02:15 PM   #7
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index.html HB User
Re: Undiagnosed: Desperate For Help

Quote:
Originally Posted by Young&Suffering View Post
... I have tried physical therapy and exercise and it just made the pain worse. Can pain from fibromyalgia be absolutely crippling and debilitating? ...
Yes. I think if you visited the chronic fatigue syndrome board here at healthboards.com, you would be amazed at the extent of suffering. From what I've read, the pain and fatigue are almost completely debilitating.

How long did you stick with the gluten-free diet?

I know that these things don't explain everything. I think it's possible that there are multiple causes and not just one. Celiac disease CAN cause profound weight loss and there is a specific rash that can accompany it. As for the bloody urine and sinus problems, let's hope those are improving.

Last edited by index.html; 08-21-2007 at 02:23 PM.

 
Old 09-12-2007, 09:38 PM   #8
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katkatdd HB User
Re: Undiagnosed: Desperate For Help

My guess would be thyroid disease... Take a look into subclinical hyperthyroidism. The supressed TSH levels could explain the weight loss as well!!!

And the positive antibody I believe is an indicator of Grave's Disease. I thought I have read that ANY TSI is indeed Grave's Disease. You could check out the thyroid board here. THere are allot of great people there with allot of knowledge.

Good luck 2 u!

 
Old 09-18-2007, 05:25 AM   #9
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desparado13 HB User
Re: Undiagnosed: Desperate For Help

Hi I'm sorry to hear about all of your problems. Like you I've had problems for 4 years now and still need a diagnosis. I know you desparately want an answer and I think that's the worst part about being unhealthy: is just not knowing. It drives you crazy and you feel like everyone around you just thinks your a hypochondriac. Anyway I'm not a doctor, bur I read your info a couple of times actually. I really think you might have a vasculitis condition(inflammation of arteries/veins), in fact I have a strong hunch. I'm not sure if your familiar with it but there are various types. It would explain your nose bleeds, wieght loss, blood in urine, chest pain and shortness of breath(due to lung involvement), rashes,blurry vision, stomach problems, and other problems. And actually there is a certain type PAN vasculitits that has astma as being the top symptom. They are very rare diseases so it would also explain why no one is able to figure out what you have. I think one of few ways of really knowing is a biopsy of affected tissue(like the lungs or kidneys), much like knowing if you have lymphoma you have to have a lymph node biopsy. So I think maybe u should go to a doctor who specializes in vasculitis conditions. You might find the answer you've been looking for. I urge you to read about it online. Again these are rare diseases and your symptoms are not normal at all. It just makes sense. I wish you alotta luck and post to keep us informed.

 
Old 09-19-2007, 03:07 AM   #10
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Join Date: Jul 2006
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bailey11 HB User
Re: Undiagnosed: Desperate For Help

I am sorry I did not get time to read everything you wrote, so I apologise if this has already been mentioned. You may have a chronic case of Candida. You may need to be on the Candida diet along with some dietry supplements such as a powerful anti-fungal formula & a high potency Probiotic. I did this, and although I only did the diet strickly for three months supported with my supplements, I felt amazing. One year later and still concious of the candida diet, but more relaxed, I am able to now work full time and most of my dehibilitating symptoms have gone. They come back as soon as I neglect myself, and I will be taking these supplements until the day I die. I won't go into all of my symptoms but here are a few that have now gone because of my new lifestyle...Chronic fatigue, Migraines, flu like aches, tiredness, foggy head, poor concentration, low sugar levels...that caused an array of symptoms, always hungry, (watch carb intake!) night sweats, cold chills, etc etc etc. You could have two or three things that have symptoms that stem from those few things that can be menacing, try the elimination process, and try this if you havent already, goodluck!

 
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