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Posts (41)

Jan 5, 2018 · Autoimmune diagnosing problem in Autoimmune Diseases

@brie87144 your experiences and condition are so very sad to hear about. First, I have to say, with your parental/family/work obligations, it is truly astounding that you have been able to hold it together despite feeling so awful, so long, with no clear diagnosis nor obvious path to recovery. I pray that you WILL find the help you need, and recommendations for next steps, and recovery. I noticed in your list of specialists consulted there was no mention of a TOP infectious disease specialist. Because your first symptoms began after a viral infection, I wonder if you might have 1) a RARE viral infection from the start, OR 2) a secondary infection set in after the first “infection,” causing the ensuing “pins” sensations, balance issues, bladder issues, and sensory and balance/stamina malfunctions.

If you could possibly have Lyme disease–or any infectious disease that is even more rare–maybe a TOP infectious disease specialist could help rule in or out causes, and recommend treatments. There are many many rare infections that can throw our systems into disarray. Here is a list of “rare” viral infections (seventeen pages of various types, with short descriptions, & links) https://rarediseases.info.nih.gov/search?Keyword=rare%20viral&page=1 This list might not be exhaustive. The same site provides a 72 page list of “rare bacterial” bacterial infections, short descriptions, and links to more info. https://rarediseases.info.nih.gov/search?Keyword=rare%20bacterial%20infections&page=1 Again, this list might not be exhaustive, but maybe you could copy/carry it to a consult with a TOP infectious disease specialist, to determine if ANY might be responsible for your symptoms, and if there might be a treatment that could help with a cure or at least improvement of your symptoms and quality of life.

I, too, am so sorry you are going through this, not only for the frustration, pain, sensory loss, risky balance/stamina and uncertainties you are experiencing, but also for your family who also probably feel helpless as to what to suggest. I will keep you in my prayers, and hope that helpful resolution is within reach. Please keep us posted.

Dec 13, 2017 · Teen problems with periods in Women's Health

Hi @confused77 I am sorry that your daughter (and you) are going through this, and glad that you are reaching out to find solutions. I would also recommend what @sharonvogel recommended, to keep a diary and take it to a reputable OBGYN or Endocrinologist. Not pleasant, but please also consider taking a photo of the “findings” reported by your daughter (in toilet bowl, and on tampon) so that your medical team can “see” exactly what she’s talking about. If she does have PCOS and your OBGYN has not offered suggestions on lifestyle methods of treatment and/or meds, you might consider seeing an Endocrinologist (ask reservation staff if they are experienced in treating PCOS–some specialize in diabetes or other conditions).

I was diagnosed with PCOS while in college as a results of being referred to an Endo by the Infirmary nurse; I had symptoms since I was 11 years old. It can be manageable for many, depending upon the hormonal status and causes. Endo suggested that I lose weight, suggesting that my excess “body hair” would likely fall out, acne would clear up, and “periods” would be more normal and tolerable. It was TRUE! I have been able to keep my symptoms in check (except for hormonal migraines) for many decades by eating a high fiber diet (watching calories) and getting plenty of aerobic exercise (which also is a mood enhancer). I also have thyroid disorders (autoimmune hashimotos thyroiditis with hypothyroidism) which were not diagnosed for many decades. In both cases (PCOS, and hashimotos thyroiditis), endocrinologists helped me the most. Not that the others did not care, just that these issues are a small percent of what they encounter clinically versus the Endocrinologists. I hope you and your daughter can find help and that she will feel better soon.

Dec 1, 2017 · Constant Fatigue, 20 year old female in Autoimmune Diseases

FANTASTIC! It is so wonderful that you found a physician who did a comprehensive set of tests, and exams. Glory Hallelujah! The results are not surprising, and I hope you are reassured to know your diagnosis now, and that effective treat is available. I hope your symptoms will start clearing up as you begin thyroid medications, and hope your appointment with the ENDO can be expedited. The day after I began taking levothyroxine (Synthroid) I finally experienced relief from a daily headache, occurring for three years! In a few weeks after beginning Synthroid, my skin normalized, energy returned, fluid accumulation (and carpal tunnel syndrome) remitted, and hair/nails improved. I pray that you will feel SO much better soon. Thank you for sharing your experience, @plshelpmyfatigue You are on your way to recovery!!! Happy Holidays!

Nov 28, 2017 · Drug Induced Lupus in Autoimmune Diseases

I’m hoping so, too! Please keep us posted. I don’t think it’s fibromyalgia either but I merely provided the background as an example of Mayo “recognizing” a symptom complex that at the time, was not known widely, in the medical literature or taught in medical schools. Whatever you are dealing with, I feel that they will decipher it and hopefully have some treatment recommendations. In re-reading your initial post, I wonder if the polymer clip (that replaced the titanium clips) can cause toxic, allergic or inflammatory reactions? It is good that you are making a list of your symptoms, procedures, dates, medications, med results/reactions, and all elements that affect your wellbeing prior to your visit. I hope your appointment goes very well, that you will soon feel much better.

Nov 28, 2017 · Drug Induced Lupus in Autoimmune Diseases

Dear @fox940, I am so so sorry you are going through this long excursion of pain and discomfort, to find a diagnosis and treatment that helps alleviate all of your symptoms. I have nothing to add to the convo as it is foreign to me, but wanted to let you know that My mom had horrible daily pain/symptoms in the 1970’s that no FP, Internist or Rheumatogist in her area could diagnose or treat. My Dad took her to Mayo (Rochester) and she was diagnosed promptly with a condition (little was known at the time), Fibromyalgia. The Rheumatologist and her Team there provided her AND her local physician in Florida with a Treatment plan. Her life improved dramatically (she’s still living well at age 86). Not that I think you have Fibro, just saying that many disorders are DIFFICULT to diagnose by even excellent physicians locally, but are more easily deciphered and recognized at a major center (such as Mayo) that focuses/researches/diagnoses rare, new, and complicated multi-system disorders. I hope that you will find helpful solutions on your trip to Mayo, and a caring team that leaves no stone unturned in evaluating your medical history, current symptoms/issues and treatment options.

Nov 6, 2017 · Chronic severe nocturnal hypnic headaches in Sleep Health

@lisalucier I thought I responded to your post long ago but I guess I did not…I’m sorry! Things that improve my overall health have also helped reduce the frequency and/or intensity of headaches to a certain extent. They include eating smaller meals more frequently to keep sugar levels from roller-coasting; “breathing meditation” and Tai Chi; regular cardiovascular exercise and keeping my weight under control so as not to provide Polycystic ovarian disorder symptoms and resultant hormonal fluctuations. Specifically for headache prevention or to use during headaches: wearing wrap-around style dark “wear over glasses” sunglasses to avoid sun and glare; avoiding movie theaters (flicker, glare, and loud noise); black out curtains in our home to keep temperature levels from fluctuating, keep glare to a minimum, and to facilitate sounder sleep (helps melatonin); avoiding MSG, nitrates, nitrites and any food that are out of date or “old” in the frig; staying hydrated; drinking coffee at onset of migraine, and at PM, as a component in preventing hypnic headache); dressing in layers so that controlling body temp is easier. I try to avoid avoid being around cigarette smoke and smoky air due to fires, campfires, and barbeque grills. Many of my friends LOVE Scented Candle parties, and I run in the opposite direction! I avoid Elevators (too much perfume or smoke-smell) and take stairs when possible. I’ve tried many different types of pillows, bedding fabrics, body soap, and laundry detergents over the years, always suspecting SOMETHING was triggering my headaches; none of those seems to have an impact though I usually avoiding highly scented products.

I kept diaries on and off and avoided “common” trigger foods for lengthy periods, but hormonal cycles were the only obvious correlation and no foods other than MSG and possibly nitrates/nitrites. I tried many nonRX treatments for recommended trial intervals (CO-Q, feverfew, B vitamins, MegaMagnesium, lavender roller-sticks, massage, acupressure, biofeedback, and probably others) which do help many migraine sufferers, but did not impact mine. I never drank wine or alcohol, so I don’t know if they are triggers for me or not.

When in crisis, a scalding hot shower to head and neck can divert my migraine pain until injections kick in. For migraines, sometimes cold packs or putting with ice in my mouth, help divert the head pain temporarily. At one time in my life, being able to go to sleep helped relieved some migraines, but now with Hypnic headaches, it’s not an option unless I have taken indomethacin two hours prior. I strive for a “routine” nightly sleep pattern, but that’s elusive due to family obligations across time zones. I am in great overall health, despite having very debilitating headache types that sort of trigger one another. Thanks for asking, Lisa!

Nov 6, 2017 · Undiagnosed Autoimmune Disorder - my mom in Autoimmune Diseases

AMAZING report, so glad to hear your Mom has turned the corner and even smiled. I’ve never heard of Adult Still Disease but will certainly look it up. I wonder if proximity to the flood waters from Harvey played a role in her illness, and if so, others proximal to Harvey might also be at risk. I pray that she continues to respond well to the Anakinra injections, and that her prognosis is excellent. She is SO lucky to have a daughter who set aside her own obligations to rapidly travel to Mayo Arizona to save her life, and a devoted husband who helped in the process of finding help and relief..

Nov 6, 2017 · Constant Fatigue, 20 year old female in Autoimmune Diseases

plshelpmyfatique, It is wonderful that you have found a very engaged and caring rheumatologist! I hope he can expedite your sleep study to find out about narcolepsy or other sleep issues. You mentioned acne and weight gain, which rang a bell. Have you been evaluated for Polycystic Ovarian Syndrome (POS)? It is an endocrine disorder that can cause weight gain, acne, hirsutism (excess hair), menstrual issues, and a whole host of other symptoms. I was diagnosed at age 19, and was told to lose 5-10 pounds to “control” the POS symptoms. With the help of a high fiber and hypoglycemic diet–I lost the weight and the excess hair on my fingers, toes, back and stomach; my acne gradually disappeared. However, I continued to have terrible “hormonal” migraines cyclically, and after many years, they began occurring daily.

Seeking help for the daily headaches, I was eventually diagnosed with hashimotos thyroiditis with Hypothyroidism by an endocrinologist (can also cause symptoms such as weight gain. tiredness, dry skin, depression and possibly other symptoms, if untreated). My gynecologist and internist had noted before this diagnosis, that my TSH was slightly elevated, but did not feel the need to treat it. I paid out of pocket to see the endocrinologist who did the Antigen tests (both lab results were extremely HIGH). He immediately prescribed Synthroid, and worked closely with me for months to titrate to an effective dose. My “chronic” headaches became less intense and less frequent. My tiredness resolved, and the awful “fluid retention” and carpal tunnel syndrome resolved. I don’t recall if the T3 and T4 tests were done by my “regular” MDs prior to seeing the Endo.

About your “normal” TSH, T3, T4: I don’t know anything about the “reverse T3” test. I’m guessing your MD’s as of yet, have not felt it necessary to test for Thyroid Antigens (which are tests for autoimmune thyroiditis, which CAN look similar to hypothyroidism even if TSH is normal). I hope this Rheumatologist will consider sending you for a consultation with an Endocrinologist who can investigate not only thyroid function, but also functioning of the pituitary gland and other endocrine systems. Hoping your health will soon be improving by leaps and bounds!