Arthritis Community
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783212 tn?1295031606

What is going on?

I am experiencing something that I experienced before but do not want to go through the frustration with the doctors again.  I have been waking up with sharp pains on the right side of my head  that almost feel like it happens in spasms. This happened about 5 years ago on the left and MRI showed blood vessel damage and 2 small lesions.  The doctors tell me nothing other then giving me Topamax.  I have had migraines over 20 years but this pain is not migraines pain.  It feels like someone scraping inside my head with something sharp.  When this happens I hold my breath and almost feel like I am pushing back by exhaling when it happens.  I have found that most doctors want the exciting, easy to diagnose illnesses.....like something they see in blood or on an xray....even then if its tiny its not exciting enough I guess.  I have pain through out my body including my bones.  My hands swell at least 3 times a week and are also red.  It seems like my symptoms cycle.  Head pain, digestive issues, swelling and ALWAYS fatigue.  Fatigued to the point I feel woozy or drugged.  My PCP finally heard me say my hip hurts and I limp at times.  Xray showed Osteoarthritis.  But, she didn't want me to go to a Rheumatologist?  My father has rheumatoid arthritis as well as my mother.  My Grandmother has had a stroke, my father has had two heart attacks and is not losing to lung cancer.  My Auntie has Scleroderma and my brother has Epilepsy.  SO, for me to have constant issues with my head and muscles and bones is worrisome.  I need a caring doctor ( which we all do I know) in the Colorado Springs area who will want to know WHY their patient is hurting and having certain symptoms.  I get depressed sometimes because my gut is telling me that there is something going on but because the general exams show nothing then doctors don't respond.  I also have high blood pressure which has caused hypertensive retinopathy.  I have high cholesterol, vitamin D deficiency and a doctor once thought I had Lupus.  He did a blood test that came out negative and standing in front of me ( no further tests) says I have fibromyalgia.  And then, more pills. I was diagnosed with Chrohns after a Colonoscopy and ultrasound but now the new doctor says that I have GERD and possibly an Ulcer.  She gave me no medicine to help with the constant diahrrea exept Prilosec???  She hasn't even tried to look and see what she thinks it is.   I have no energy and feel ill most of the time.  I keep it to myself because I know people get tired of me always hurting or feeling bad.  I need direction on a good doctor who I can tell what I have had to go through for all these years.  I cant think of the last time I felt normal and healthy and energetic.  And, I shouldn't have to suffer......and I shouldnt have to keep starting over and over with new doctors.  Even with the family history shouldnt certain things be investigated?  I am scared all the time that I am going to have a stroke.  I guess I am just venting.  
2 Responses
483733 tn?1326802046
Yes, you definitely need a good doctor to help you.  There is something going on.  Can you switch your primary care doctor to get one who will make the proper referrals?  Sounds like you need to visit a better rheumatologist (a good one works with you over time to see how your blood work develops in order to get a proper diagnosis) and either a gastro doc or doctor of internal medicine.  Please insist, use tears, whatever, to get what you need.
Avatar universal
Trudie is so right.  With having family members with autoimmune diseases warrants a rheumatology consult with the symptoms you are having.  

Just to throw anything out there to give you something to research: could the pain be similiar to that in temporal arteritis.  Just add it to google or other browser and it will pull all kinds of info up.

Also, I was watching Dr. Oz this week and they were telling about how many people have Celiac disease and are misdiagnosed.  He was saying that there are more people in the world that have celiac disease then with MS or even RA.  It could be a problem with you.  You may want to try a gluten free diet and see if it helps you out.  I know Elisabeth Hasselbeck has just written a book about it.  It could be another source for you to gain insight.  

Don't give up!  Sometimes you have to do a lot of research on your own to get help from those that are supposed be helping us.  It may help to have someone that would be a strong advocate for you to go with you to your doctor appointments.  It is always helpful to have 4 ears and sometimes doctors will listen more to a third party for whatever reason.

Know you are not alone and vent anytime!
Hope something helps,

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