Discussions By Condition: I cannot get a diagnosis.

What is wrong with me, & what ? should I ask my doctor?

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: kmarie23
  • February 5, 2009
  • 03:51 PM

Hi, I'm new to this site and hope to get some constructive advise on where I should turn to straighten out my health.
6 yrs ago I had swollen knees w/fluid on them and blanching, freezing feet and hands (Raynaud's). I came up positive on my ANA and was told I had MCTD and put on Plaquenil. After a year I took myself off that since it didn't make anything better and is a high risk med, and I've been off it ever since. Since then my activity level has steadily declined, I've also tested positive for Hashimoto's Thyroiditis, Migraine Syndrome, and severe osteoarthritis. I feel crappy most of the time but have young kids so I have to keep moving. I've gained tons of weight since I was a collegiate athlete, avid runner, and now can barely go up and down a flight of steps. When I began the Hashimoto's, they thought I was haveing panic attacks so they put me on Lexapro and Wellbutrin, which I'm afraid to stop and have now been on for 3 years. I get a pretty severe headache at least once a week but keep going through it. I no longer work, and wonder if I could hold a job. I turned 46 in November and feel 20 - no 30 years older. I might be slightly peri-menopausal, but for the most part have no menopause symptoms yet. I've been told I have Avascular Necrosis in both my ankles and had surgery on one 2 years ago, only to be told that the surgery didn't work. I'm sort of waiting to have my right ankle collapse, since that's what the surgeons told me would happen, at which point I'll have to have it fused or let them try an experimental bone grafting procedure. I ache all the time and have days where I just can't see to even get the energy to get dressed. I find myself falling asleep in the chair mid afternoons, which is the worst part of the day for me. I'm usually fairly good to go until about 1-2pm and then I run outa steam.
I go to a new internal med doc tomorrow because my old guy didn't seem to think there was anything wrong with me. My rheumatologist is a nice guy and just tells me to be happy I have mixed connective tissue instead of Lupus, RA, Scleroderma, or something worse. I take thyroid meds, prilosec for esophageal stricture, the Lexapro and Wellbutrin b/c they tell me I need it. 4 meds and I'm only 46!!
I wonder if anyone has any advice on questions or tests they could run, based on your own experience. I'm frustrated, tired of feeling crappy and old, and I miss my old life terribly.

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  • Hi, I'm new to this site and hope to get some constructive advise on where I should turn to straighten out my health.6 yrs ago I had swollen knees w/fluid on them and blanching, freezing feet and hands (Raynaud's). I came up positive on my ANA and was told I had MCTD and put on Plaquenil. After a year I took myself off that since it didn't make anything better and is a high risk med, and I've been off it ever since. Since then my activity level has steadily declined, I've also tested positive for Hashimoto's Thyroiditis, Migraine Syndrome, and severe osteoarthritis. I feel crappy most of the time but have young kids so I have to keep moving. I've gained tons of weight since I was a collegiate athlete, avid runner, and now can barely go up and down a flight of steps. When I began the Hashimoto's, they thought I was haveing panic attacks so they put me on Lexapro and Wellbutrin, which I'm afraid to stop and have now been on for 3 years. I get a pretty severe headache at least once a week but keep going through it. I no longer work, and wonder if I could hold a job. I turned 46 in November and feel 20 - no 30 years older. I might be slightly peri-menopausal, but for the most part have no menopause symptoms yet. I've been told I have Avascular Necrosis in both my ankles and had surgery on one 2 years ago, only to be told that the surgery didn't work. I'm sort of waiting to have my right ankle collapse, since that's what the surgeons told me would happen, at which point I'll have to have it fused or let them try an experimental bone grafting procedure. I ache all the time and have days where I just can't see to even get the energy to get dressed. I find myself falling asleep in the chair mid afternoons, which is the worst part of the day for me. I'm usually fairly good to go until about 1-2pm and then I run outa steam.I go to a new internal med doc tomorrow because my old guy didn't seem to think there was anything wrong with me. My rheumatologist is a nice guy and just tells me to be happy I have mixed connective tissue instead of Lupus, RA, Scleroderma, or something worse. I take thyroid meds, prilosec for esophageal stricture, the Lexapro and Wellbutrin b/c they tell me I need it. 4 meds and I'm only 46!!I wonder if anyone has any advice on questions or tests they could run, based on your own experience. I'm frustrated, tired of feeling crappy and old, and I miss my old life terribly. Hi Kmarie, You have a lot of symptoms in common with b12 deficiencies. Come on over to the b12 forum http://forums.wrongdiagnosis.com/showthread.php?p=143413&posted=1#post143413 and check out the list of symptoms and talk to folks. The right brands of active b12s can help tremendously no matter what serum cobalamin levels might be.
    Freddd 3576 Replies
    • February 6, 2009
    • 00:27 AM
    • 0
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  • There are some w/in the 4 mile radius according to the link you added, but I've had symptoms longer than I've lived here and my other address didn't show any significant cell towers or antennas.
    kmarie23 4 Replies
    • February 6, 2009
    • 01:35 AM
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  • Dear Fredd;I looked at your link to Vit B12 def. and didn't see any of my symptoms. I've never been diagnosed w/anemia, and they have drawn blood pretty often in the past, seems like every dr. visit they draw blood and do at least a CMP. I go to the doctor in about an hour, so if anyone has any suggestions on what to ask them to test for, it would really help.:confused:
    kmarie23 4 Replies
    • February 6, 2009
    • 01:06 PM
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  • You definitely need treatment for your autoimmune disease.That would probably clear up a number of your symptoms.
    richard wayne2b 1232 Replies
    • February 6, 2009
    • 03:13 PM
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  • Dear Fredd;I looked at your link to Vit B12 def. and didn't see any of my symptoms. I've never been diagnosed w/anemia, and they have drawn blood pretty often in the past, seems like every dr. visit they draw blood and do at least a CMP. I go to the doctor in about an hour, so if anyone has any suggestions on what to ask them to test for, it would really help.:confused: Did you find the list of symtoms and co-correlates? Résumé / AbstractBackground: Patients with autoimmune thyroid disease (AITD) have a higher prevalence of pernicious anemia compared with the general population. Clinical signs of B12 deficiency may be subtle and missed, particularly in patients with known autoimmune disease. We assessed the prevalence of vitamin B12 deficiency in patients with AITD and whether their evaluation may be simplified by measuring fasting gastrin levels. Methods: Serum B12 levels was measured in 115 patients with AITD (7 men and 108 women), with a mean age of 47 ± 15 years. In patients with low serum B12 levels (≤133 pmol/L), fasting serum gastrin and parietal cell antibodies (PCA) were measured. Results: Thirty-two patients (28%) with AITD had low B12 levels. Fasting serum gastrin was measured in 26 and was higher than normal in 8 patients. PCA were also measured in 27 patients with B12 deficiency and were positive in 8 patients. Five patients with high gastrin levels underwent gastroscopy with biopsy, and atrophic gastritis was diagnosed in all. The prevalence of pernicious anemia as assessed by high serum gastrin levels in patients with low B12 was 31%. Conclusions: Patients with AITD have a high prevalence of B12 deficiency and particularly of pernicious anemia. The evaluation of B12 deficiency can be simplified by measuring fasting serum gastrin and, if elevated, referring the patient for gastroscopy.http://cat.inist.fr/?aModele=afficheN&cpsidt=18164835 Hashimoto's Thyroiditis is specifally linked to b12 deficiency. B12 does not correct it, it is a co-correlate. Many more people will have fatigue, headaches and various neurological symtoms from b12 deficiency than will havew pernicious anemiam an autoimmune attack on parietal cells as well as autoimmune gastritis. Autoimmune GastritisAutoimmune gastritis is also called type 1 chronic gastritis. Chronic gastritis type 2 is a similar disease caused by Helicobacter pylori infection. Over type patients with chronic H pylori infection can develop autoimmune gastritis. In autoimmune gastritis, the mucosal cells of the intestines are destroyed by autoantibodies to gastric parietal cells. Unlike pernicious anemia, autoantibodies to intrinsic factor are not presenting autoimmune gastritis. However, chronic autoimmune gastritis may progress to pernicious anemia. This process may take 20 to 30 years, which suggests that autoimmune gastritis is an early phase of pernicious anemia.AGPA antibodies occur in about 90 percent of patents with pernicious anemia, 30 percent of first-degree relatives of patents with pernicious anemia, and they are also seen in up to 50 percent of adults and 18 percent of children with Helicobacter pylori infection. In addition, AGPA antibodies are seen in patients with various autoimmune endocrinopathies, including autoimmune thyroid disease. 2-8 percent of normal elderly subjects may also have AGPA antibodies, and the incidence of atrophic gastritis increases with age.http://autoimmunedisease.suite101.com/article.cfm/vitamin_b12_deficiency Cobalamin Deficiency and Migraine http://www.cobento.dk/gfx/content/pdf/Cobalamin%20Deficiency%20and%20Migraine.pdf Cobalamin-responsive disorders in the ambulatory care setting: unreliability of cobalamin, methylmalonic acid, and homocysteine testing Lawrence R. Solomon From the Department of Medicine, Yale University Health Services, New Haven, CT; and Section of Hematology, Department of Medicine, Yale University School of Medicine, New Haven, CT. AbstractEarly recognition of cobalamin (Cbl)–responsive disorders in the ambulatory care setting is essential to prevent irreversible neurologic deficits. However, diagnostic algorithms using Cbl, methylmalonic acid (MMA), and homocysteine (HCys) measurements reflect studies in academic centers, and their negative predictive values have not been established. Thus, records of 456 ambulatory patients evaluated for Cbl deficiency at a staff model HMO were reviewed. Pretherapy Cbl, MMA, and HCys values in individual patients varied by 23%, 23%, and 17%, respectively, over 2 to 6 weeks. Hematologic or neurologic responses to pharmacologic doses of Cbl occurred in 37 of the 95 evaluable patients. In these patients, pretherapy Cbl, MMA, and HCys values were normal in 54%, 23%, and 50%, respectively. If therapy had been restricted to symptomatic patients with both low or intermediate Cbl levels and increased metabolite values, 63% of responders would not have been treated. Twenty-five patients did not respond to treatment, including 5 of 11 patients (45%) with low Cbl, 22 of 49 patients (45%) with high MMA, and 13 of 30 patients (43%) with high HCys values. It is concluded that Cbl, MMA, and HCys levels fluctuate with time and neither predict nor preclude the presence of Cbl-responsive hematologic or neurologic disorders. "Symptoms consistent with Cbl deficiency, including paresthesias, unsteady gait, fatigue, and impaired memory, are commonly encountered in the ambulatory care setting, and early recognition of Cbl deficiencyis important to prevent progressive, irreversible neurologic and cognitive impairment."http://bloodjournal.hematologylibrary.org/cgi/reprint/105/3/978
    Freddd 3576 Replies
    • February 6, 2009
    • 07:30 PM
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