Join Date: Mar 2013
| | Dx'd with Fibro 20 years ago, but doesn't stop there...
I am brand new to the boards. I just turned 41, and I have been labeled as a medical enigma. I am getting very discouraged, and any suggestions would be helpful. I have been to so many Doctors - many of which wholeheartedly agree that I have a lot of issues, but I feel like they are all putting out fires for each of my issues, but not figuring out what is the base of my problems.
Here we go:
Adenomyosis (uterus) – Hysterectomy in 2009
Asthma – COPD being considered as possible
Arthritis / Back Pain (Lumbar Facets – mid & lower back, and now also Cervical c4, 5, &6). Also ask to recheck Knees/shoulder
Cysts (Female) - Hysterectomy in 2009
Dislocated Shoulder (R) –chronic pain, numbness in arm; going to ask to be checked for Arthritis in that area as well
Dry Mouth / Eyes
Fibroids (uterine) – Hysterectomy in 2009
Fibrocystic Breasts – breast reduction in 2012
Fibromyalgia - diagnosed in 1992
Gallbladder Disease – Surgically removed 2005
Hepatic Angioma(s) – Liver – being monitored 1x per year
IBS (Gastro also notes thickening of colon walls – unsure why)
Interstitial Cystitis / UTI’s
Neuropathy – loss of sensation /numbness / tingling in feet /hand, usually on right side, but sometimes both
Pneumonia / Pleurisy - recurring - every winter, or bronchitis, 11 years in a row now
Reflux/GERD – Hiatal Hernia – Deformed Diaphragm – Surgery in Aug 2011
Sinus pain / pressure / facial pain
Strep Throat (recurring)
Tooth decay and infections (Dry Mouth) - drastic increase in the last 4 yrs.
I had Scarlet Fever as a child, at age 6. Since then, strep throat often. I have had the other issues come on since I was 13 years old - starting with Bronchitis, and fatigue, muscle pain, facial pain... I was diagnosed in 1992 with Fibromyalgia... yet I have found I now have other issues that seem totally unrelated?
I have been to so many Doctors - more recently, the Neurologist, Pulmonary, Cardiologist. I have been in the ER several years in a row, usually for lung issues or chest pain. They have recently checked me for Sjogren's markers, and with a family history of RRMS that was recently discovered, they're re-evaluating that. But I got a letter (not even a call) that the bloodwork for autoimmune came back "normal" today, and the VEP they did was also normal. The Neuro said he is ruling out MS as well, and I am having another MRI of my brain this week, but he has already said he doesn't think it's MS. He felt I was onto something for mentioning Sjogrens, as I have ALL of the typical listings for Sjogrens, but Neuro told me he felt I would have to have at least one of the tests come back abnormal. Since I was 18, my SED RATE has been high, but that has been the only one that comes back with any indicators. I have been a guinea pig on so many levels, with meds, etc... most of them cause swelling in me, weight gain, blood pressure issues, etc. I am pro actve for myself and take super multivitamins, Vitamin D3 (neuro suggested 3 years ago), probiotics, and magnesium. They have helped, but I can only imagine how bad I would be at this point if I didn't take them! Prescribed meds: Singulair, allegra, miralax, advair, albuterol). I was on lyrica, and elavil, but I had awful side effects. I have had to take others recently - but I hate the side effects of those as well for the pain (Ibuprofen, Hydrocodone, but only as needed for pain, xanax for sleep problems - 2-3x a month)
What next? I have so many doctors involved at this point, I feel like it's not helping. I am a happy, optimistic person despite all of my troubles, but I am truly at my wits end, and getting depressed. I just want some viable answers...