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Dx'd with Fibro 20 years ago, but doesn't stop there...

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Old 03-19-2013, 06:11 PM   #1
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Unhappy Dx'd with Fibro 20 years ago, but doesn't stop there...

Hello, all;
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
(Chronic) Bronchitis
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
Joint Pain/Swelling
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...


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Old 04-05-2013, 02:48 AM   #2
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Re: Dx'd with Fibro 20 years ago, but doesn't stop there...

Hi. Im sorry you have experienced so much. Im just going to point out that if you are ruling out MS- you want to absolutely make sure you are seeing a MS specialist, and not a regular Neuro....and just because they are doing a brain MRI, they should also be doing a Spine MRI and both should be done with and without contrast.....anything less than this, isnt a MRI test for MS...which makes me think you are seeing a regular neurologist....

All neurologists are NOT created the same. Dont let anyone fool you with that. Some Neuros specialize in strokes, others in migranes...some in Parkinsons Disease, and others in MS- seeing the wrong Neuro to rule out something like MS, will not help you......just so you also know, MS isnt hereditary. Whether someone else has RRMS (or any other type of MS) in your family means zero when it comes to your can take years and years for MS to show up, as there is no one single test for MS....there is criteria which a patient must meet in order to get a diagnosis however, its called the revised McDonald Criteria, and you can read up on that...many a patient, has been wrongly dx with Fibro when they really had MS.

As for your symptoms, they sound neurological to me. I have a sister with Sojourns, and she has only the dry eye/ mouth going on- none of your other symptoms. I have MS, and I have quite a few of your symptoms....the female related ones may just be unfortunate. Obviously cysts, whether uterine or mammory, are inherited - and usually have nothing to do with autoimmune diseases. I do, suffer from both like you, however. Having MS does make you more supceptible to infection as the immune system is compromised, which could explain the increase in sore throats and other infections....gum disease has been linked to autoimmune disorders, but not specifcally to MS.

I hope you get some answers. If you want more info on MS, we have a MS board here on healthboards where we are happy to share any MS specific questions you might have. Good luck with the tests.

RRMS- dx 05

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