Just Another Frustrated, Confused Person

[em3]

I am a 34 year old mother of 3 beautiful girls. I was diagnosed with sarcoidosis 3 years ago, but nothing else (according to the dr.) is from the sarcoid. I have bad migraine headaches up to 5x's per week. Lately they are getting out of control to where I had one for 20 days and more recently 10 days. My neck is painful and I have a ruptured disk and 2 bulging disks but the Dr. said he doesn't think I need surgery yet, but instead to treat the headaches as they come.  I have some unchanged lesions in the hippocampus area of my brain that the dr. figures came from my previous menengitis. I have bilateral peripheral neuropathy badly in my feet which causes me to have a shuffled gait and to be off balance and fall over, not to mention the really bad dizzy spells (those certainly don't help). I can't walk far and never without a cane anymore. My liver enzymes are always slightly elevated and my B12 runs on the low side. My thyroid is enlarged but my blood levels are all fine. My hair occasionally falls out in patches but hasn't happened in a year now (Knock on wood!!). My legs recently started to retain water for no apparent reason. My vision blurs in the evenings. My skin is super sensitive to touch and I do have some patches of psoriasis. My fatigue runs my life and makes me feel drunk when I refuse to give into it. Of course my memory has been having issues with all of this and naturally the depression has set in. I am so tired of fighting this, if anyone has any ideas please help me!! I can't continue with the chronic pain!!

[em3]

Thank you all for your input!! Jenny2008 We have been working on meditation and Yoga. My daughters and I are a team and we have slowly been Feng Shui-ing our home and trying to increase our home and lifes chi. Great Idea!! To decompress is so important. Tumbleweed I deal with multiple Dr.'s. The one that told me to medicate the headaches is a neurosurgeon he wants me to work with my neurologist. I see my neurologist at least twice a month. Belle07 & Dr. Choi I am on Topamax, Lyrica, Ultram, Cymbalta, and Trazodone. None of these take away my pain or allow me to sleep at night. I live in a small town and our healthcare is limited here. A dear friend of mine thinks I may have an Arnold Chiari Malformation and wants me to head out to New York to see the specialist there. I am in Michigan so we will have to see how the finances for that pan out. Because of my illness I have lost my job and I am fighting for Social security. I currently have state medicaid as insurance and I'm not really sure how that will all work. My friend has already gotten me a flight out there and she is working on some financing. Wish me luck!!

[Enoch Choi, MD]

I agree that the headaches are coming waaaaay too often, and your doctor needs to get you on prophilactic medication to reduce how often you get migraines.  Your doctor can also help you more with the chronic pain, bug him more until you get relief.

[9743km]

Did you just find a regular nutritionist?  One through your local hospital?  I would really like to work w/the inflammation in the body.  I want that reduced.  I think it may help.

[Belle07]

If I may ask, what medications do you take for your conditions? I have dealt with severe intersitial cystitis and Fibromyalgia for several years. I have 2 young boys and can relate to your distress (although your conditions are far more debilitating than mine). It's hard to understand why we have to deal with so much pain. In trying to find a way to rid myself of these conditons and the pain, I started with narcotics. I was then directed to a nutritionist by accident who said that all my problems were due to food allergies, inflammation of areas in the body, etc.. I thought he was a quack because he even said all the surgeries I'd had since a child could have been avoided by eating a healthy diet specifically for my needs. Yeah, sure. Well, after suffering in my house and bed for over 2 years, I tried to 'eat' myself back into health. I am no means at even 90% now, but with the medical food, avoiding dairy, wheat, sugar (BIG ONE) and several other food items, while supplementing myself with pure vitamins and minerals, whole meal shakes, etc.. I couldn't believe I was actually feeling signs of 'life' again. My SSS (selective sound sensitivity), where I was so sensitive to certain noises, i.e., someone smacking gum or food, cracking knuckles, belt buckles clanking in the dryer, etc. was gone. I used to wear ear plugs almost 24/7! I don't know anything, but I thought I was not going to ever recover, I was taking morphine, etc.. (which helped alot during the worst of it), and now, I'm slowly feeling life again. Again, my health problems are no where near yours, but even if you could improve one thing - the migraines, the sluggishness (could be FM, CFS or other), you would feel hope. I will be praying for you every night.

Belle07

[9743km]

Definitely fire your Dr!  That is ridicilous.  I have a neighbor that had migranes much like you.  She had one that lasted 3 weeks.  Got w/a great Dr. who now has her on suppositories.  She rates her pain when the migrane is coming on, and she uses the suppository when needed.  She said it has been a life saver.  Maybe some of your tiredness, etc is due to the headaches just beating you up.  So definitely get a new Dr. for that.  Then I would suggest you get to a new gastro Dr. and have him look into all the other problems.  An autoimmune disease may be the cause of some of your other problems, but a gastro Dr. should be able to determine.  Call a good hospital around you, and see if they refer Dr's.  Talk to family or friends.  Most things are treatable when they are caught on time.

[tumbleweed1999]

First off I would change Drs!!! No way would I let him get away with telling me that!!!!!  Is he a GP or supposed to be a "specialist"?   I sounds like you might have "Cluster Headaches" - and need to see a neurologist.  I  had them for years and yes, they are extremely painful and dibilitaing.  Dr. said that they are worse than any migraine. They are called "clusters" because they come in groups.  The rest of the problems I don't know about, sorry, other than find a good Orthopedic Surgeon (not necessarily for surgery but for help) cause the guy you got now needs fired!!  I have had back surgery, tho' many moons ago.  Also get hold of a Hepatologist/Gastroenterologist that knows about AutoImmune - make that a priority for "hiring" -:) them.  I have been very blessed in that area and hit the jackpot first time.  My Dr. is very up on AIH.    
Take care, keep posting and let us know how you are doing.
Tmblwd

Jenny is right on for the Yoga. -:)

[jenny2008]

All I can say reading your history is to decrease your stress by doing yoga or mild exercise and meditation.Yoga does wonders for headaches . I think you are having autoimmune disorders.
Stop smoking , if u do and maintain a balanced life.