Desperate times call for desperate measures

[Dayz]

As you all know I have been battling some kind of illness for the past two months. Symptoms:
-Diahrrhea that lasted for a month and now is gone
- Severe migratory joint pain (it leaves me crippled for some days)
- Facial pain and ear pain (stops me dead in my tracks)
-eye pain (went to optamologist and he saw nothing)
- Mucus and blood in my stool (mucus moreso than blood)
- Stomach cramping that has sent me to the ER (I thought some crazy alien baby was ready to come out of me!)
-Upon waking my arms and legs go numb and I cant move for a couple of minutes
- I have lost 10 lbs (I am very small so this is a big change and not a good one)
- I have no appetitie
- More recently (rectal and pelvic pain I feel like something is ready to come out and nothing...its a pressure and some slight pain feeling not associated with bowel movement)
I have had:
-colonoscopy
-endoscopy
-cat scan
-every blood test known to man
Everything normal!

My doctors I feel are giving up on me I have been tested for Lupus and RA both when i was having severe joint pain. My doctor put me on steroids to see if that would work and it worked for two days and by the third day i was in the ER again (I swear they know me by name now). My doctor who has been really good and who has tried everything is now telling me to seek alternative treatments and possibly see a psychologist. I am very depressed and yes have even contemplated taking my life. I have had to quit my job and school and I cannot even imagine what my future holds.

Where I am now: My dad wants to send me to a specialist in Mexico but I am afraid that they will not be able to help me and that all of that time and money will be a waste. This is where I need some help and guidance. I really want to get better and know what is going on but I am scared to take this step. My doctors dont even want to run anymore tests because they truly believe chrons is not my problem but I disagree. This will be a big step for me as I will be leaving the country and putting my health in someone elses hands. My family is in Mexico and that helps comfort me but Iam afraid to feel alone and get depressed and not have the resources I have here. I dont know what to do and I feel like if I dont do something or get answers I will fall into a deep depression which I feel like I already am in. Should I go to Mexico? Should I stay and hope that the doctors find something? I will really appreciate any inout or guidance as I am at a loss.

Many people we know who have been very sick turn to doctors in Mexico. Even when there illness seems to be severe and they come back with something even if its treatment. I know I shouldnt get my hopes up but I dont know what else to do and this is my last hope.

 

[barelyalive]

Have you ben checked for a sleep disorder. Also could be some anxiety/blood pressure/stress issues.

Has your dentist noticed any signs of bruxism?

 

[AndiGirl]

Dayz, I want you to know that you are not alone in your feelings. It took my doctors many years before they found my Crohn's. Sometimes finding the correct diagnosis takes time and some research on the part of the patient. If you are in a dark place and feeling despondent, please seek help. This support forum is wonderful, but you may need some one-on-one counseling. My mother was a nurse. After retiring she joined a Health Education group at one of the local hospitals. I found it odd and coincidental that she was assigned to the asthma patients (educating and tracking the recovery of the patients), and patients who suffered from chronic pain. I loved it, because I am an asthmatic with Crohn's Disease. Much of what she learned in the Health Education program was beneficial to me. She taught me some excellent breathing and relaxation techniques. Of course there is regular counseling and treatment for depression. I've been down that route to, and am very grateful for it. These are just some ideas that might help you through this rough patch, while you wait for a diagnosis. Hugs to you, sweetie. You are not alone. Please don't give up and continue to seek answers from the medical profession.

 

[gypsigirl28]

Dayz.. You are not alone and no matter what happens don't let them make you feel like there is nothing wrong.. I agree with Andigirl, it can take some time and even many doctors to figure it out. I have found that Crohns and UC are very difficult to diagnose even when all the signs and symptoms are there. I have found the testing is very tricky as well.
I wish you the best of luck figuring this out.
many hugs to you

 

[Rebecca85]

I have heard of the waking up numb thing, but I can't remember what it's called! Normally when you are dreaming, your brain 'disconnects' from your body to prevent you acting out your dreams. In some cases, this temporary paralysis lasts too long. I agree that you ought to get checked for sleep disorders.

 

[StarGirrrrl]

I would got to Mexico. As an option I had planned travelling to London to a specialist GI unit, but now am too sick to travel. I am really upset about it

 

[Dayz]

Thats my biggest fear is that there is something wrong and they are missing it. I voiced my concerns to several doctors who have all assured me that if it was chrons they would have found it by now as I have had all these tests done.
Tommorow I have an appt with another GI doctor and will write everything down. I have a feeling sometimes that this isnt chrons and I am looking so much into it that I am missing something else. I have looked up and researched every kind of illness including lyme and addisons disease and my symptoms dont match. I want to thank you all for your wonderful support and kind words. I really dont want to go to Mexico because recently I have been havingeally bad anxiety attacks and I am afraid to leave my house sometimes. I have completly let this consume me and as much as I try to let go ad relax I cant. My parents are really worried and have even mentioned that someone has done some kind of witch craft on me. I dont believe in any of that but sometimes I seriously think about it. I also have a appointmentwith a colo-rectal surgeon because the pelvic and rectal pain is too much for me to handle. I have been getting horrible pains and sometimes I just want to grab all of my girl parts and rip it off of me. I went to the doctor and she gave me cymbalta and told me to take it for a week.

Starr: I hope you get better enough that you are able to see a doctor. It sounds promising that he is a specialist.

I was even looking into the mayoclinic where I heard they perform a battery of tests in a matter of a day or two to get answers instead of months. Does anyone have any expereience with the Mayo clininc?

Thank you all so much for your support! it means a lot to me and helps me feel like I am not alone.

 

[BLM]

Hey Daz,
Ive been going through it for years. I absolutely have CD....not by biopsy or blood work, but been so ill for so long. BUT, I recently found out I had severe endometriosis, and everything was taken out. I feel so much better from that being taken care of that now my disease isnt has hard to deal with. And when it is disease acting up, I know what it is...its not some possible diagnosis anymore. Good luck to you...