What is going on with me?

[invyzabul]

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.  

[karajo]

another web site.  Very helpful for understanding different types of lesions and causes.

http://www.************.com/boards/showthread.php?t=544871

[karajo]

We ALL understand your frustrations.  Autoimmune disorders take a while to be dxd.  It's because they affect so many area of the body and they are really wanting to get it right.  'Cause once they hand down that dx, your life is altered.  You can't get life insurance with some of these diseases, to name one problem.  

One of the things that really helped me get a dx of lupus was some advice I got from smeone on MedHelp.  She suggested I spend some time in the sun...if I had lupus, it would cause an autoimmune response and cause the ANA to jump up.  She was right.  But you could be dealing with something else beside lupus.  

I did a search on causes of brain lesions.  Here is the Mayo Clinic article:

http://www.mayoclinic.com/health/brain-lesions/MY00847/METHOD=print

God bless,
~Kara

[calicogabby]

I can understand your frustration.  I think rheumatologists are often given the patients that nobody else can figure out.  They get frustrated very quickly in my experience.  It doesn't excuse the less than caring treatment you have had.  Your symptoms and family history suggest a strong possibility of an autoimmune condition.  ANA tests go up and down.  (see my post too).  You are doing the right thing in keeping track of your situation.  Most importantly, keep a journal documenting all of your experiences day to day.  Keep calm in the doctors office (I know it is hard to do) and take someone with you to help you with remembering what is said.  Take notes if you can.  The sad truth is that unless some one gets sick enough to be admitted to the hospital with fairly severe problems, the whole process can drag on and on.  It is expensive too. The problem is when we don't get support we don't know how to get better!   Don't worry about venting, it is normal.  I wish you all the best.  It can make you feel crazy and unwelcome when you are going through this.  I think going to the rheum partner is a good idea even if you are worried about the doctor being biased.  The only way to know what will happen is to try, if possible, to be seen by a rheumatologist any way you can, and you are in the process of doing that. Often it takes more than one doctor to figure it out.  Persistence is the key I think.  I, too, have just about given up trying to deal with my symptoms.  But we have to keep trying for our own sake, and our families sakes.  Good luck.

[invyzabul]

the lesions were dismissed as signs of the migraines but they never explained the small vessel damage.  they also treated me like i was over-reacting.  we have many strokes and epilepsy in my family.  so when i had the left sided pain and then damage and lesions on the left ....i was concerned.  they may as well laughed right in my face.  needless to say all my pain has been on the left until recently.  as i type this i woke up with a migraine and my  job is not very understanding.  so, i sit here at my desk and cry.  the lights are shut off and i have taken an imitrex.....which causes me to feel bad in other areas.  

as for the fluid in my abdomen....unfortunately, that one is on me.  she scheduled me for an endoscopy but my insurance required me to pay a $500 deductible before having the procedure.  I don't have it yet so I havent scheduled it.  its so miserable.  knowing in your gut that something isnt right. i feel most days, like someone has beat me with a baseball bat.  everything hurts.  and if i am not hurting my stomach is out of whack.  my doctor now is new because i went a whole year without benefits.  new job took 6 months before i was elible to get benifits.  either way,  i had all my records from the neuro, gastro, previous PCP all showing the test results.  I had an ANA test done 3 years ago  showing positive for sytemic auto immune.....she did a test and said it was negative.  said i had a negative RA factor.  then tells me i have osteoarthritis.  when i asked for a specialist she wouldnt refer me because it wasnt rheumatiod arthritis ( which my father has) to the point his fingers are curled. my mother also has a form of arthritis.  then, finally, she agrees to a referall to a rheumie that is her partner.....and maybe i am wrong but i am not comfortable that i will be treated seriously with her talking in his ear about what SHE thinks.   i have all the same symptoms that my aunt has, migraines, reynauds, gastro problems, high blood, gerd, fatigue, swelling, retinopathy.......and if she would put all of the things together you would think she would be concerned. but, the tests are negative...so she isnt budging.  sorry i am venting again.

[karajo]

Many of us here have been right where you are.  I got to where I would pray everytime I went to the dr. for God to give them wisdom.  Little by little, WE put the puzzle pieces together.  It was so hard to be patient though.  I still have new things going on and I'm on treatment.  But compared to where I was, I'm doing so much better.  When I look back and think of where I was and where I am today...I cry, I'm so thankful!  

What did they do about the fluid in your abdomen?  And what explaination did they have about the lesions on your brain?

[invyzabul]

I was put on 50000 units of vitamin D twice a week. I started with 1200mg daily.  Was retested and was still was low.   I will also research the things you recommended for my stomach.  Thank you .I am pretty frustrated and I am reluctant to continue paying for prescriptions and every year a new symptom presents itself and I still don't know whats wrong.  Thank you for the prayer also.

[karajo]

I've been reading your post and trying to see if I could help you put some pieces of the puzzle together.  

Did they ever get the abdominal fluid taken care of.  If not, that would be in the fore front of my concerns.  They should maybe extract this fluid and test it to see if that would uncover any clues.

The other thing that I would like to share is I also have a lot of diarrhea.  Have had problems for years, but here lately it's been life altering.  I take an herb called slippery elm.  You can buy it at a health food store.  If I have a session with diarrhea I take 3 several times a day.  But as a maintance, I take 1 a day.  It seems to sooth the entire digestive tract.  You might also find that it helps with the ulcer situation as well.  And I can understand that you wouldn't want to take my word for it.  If you would like to go by a health food store and see what they would recommend, I would encourage you to do that too.  

Were you put on vit D supplement?  If not, you could go to wal-mart or where ever and get some D-3.  It wouldn't hurt to take at least 2,000 mg/daily.  Be sure and let your dr. know in case they would want to keep an eye on your levels.  

You definitely have something going on.  If you feel sloughed off by your dr., I would seek out another.  Thanks the Lord we live in America where we have another choice.

Praying for you, Kara