I'm a "puzzle" so where do I go now?

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JennerH
New Member


Date Joined May 2011
Total Posts : 3
   Posted 5/16/2011 1:33 AM (GMT -6)   
Hi, I'm 38 and been fighting a "mystery illness" the past eight months. I've been having abdominal pain, vomiting, and urology issues the past nine months. I've had 7 hospital stays and three surgeries during this time. This is not easy for me to swallow because I was the poster child for health and fitness before this all got started. Now, it's a good day if I can walk to the neighbor's house or get out of bed. I've been through numerous GI tests and still no answers. I went to the Mayo Clinic in Scottsdale and had a bad experience. I was very ill and traveling with a doctor who made the decision to bring me home and admit to our local hospital. I am seeing a pain specialist and hoping he can get me out of pain and off of the narcotics. I'm also taking Lyrica three times a day at the maximum dosage. I have now developed chest pain and difficulty swallowing. One of the doctors diagnosed me with Porphyria, a rare blood disease; however, not everyone is in agreement. I'm so frustrated and really getting discouraged. I wake up everyday wondering what will be next? I'm scared because my original ct scans showed my small bowel and intestine telescoping on each other with a "thickening" on the small intestine. Two laporsocopic surgeries and the surgeons couldn't find it. I'm tired of going in/out of the hospital for dehydration and pain control. I'm loosing weight and don't have much left to loose. I need help and don't know where to turn. I'm willing to go somewhere in TX or even willing to give the Mayo clinic in Rochester a chance. I just don't know how to find a doctor and what kind of doctor to start with. Someone out there has to have some answers.

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 5/16/2011 7:02 AM (GMT -6)   
Good morning JennaH, I am so sorry to here of all your issues.  There are several people who have something called Chrons Disease, have you ever been tested for this disease?  I am sorry I cant be more helpful, but I can only say to you, as far as your doctor or doctors, are concerned you have to take back your power.  Doctors sometime God like issues rolling around in there heads.  Not all of them, I have had the best of the best and the worst of the worst.
 
The one thing I learned during the 11yr of being a cp patient is, doctors are human beings with all of the same issues we all have.  So even though it is so difficult because of how awful you feel, you have to demand that your questions be answered.  They all have bosses, doctors bosses are the AMA.  Believe me if it gets to the point that you are continuing not to get the answers you needs, then it time to make some phone calls.  No one is above having to accout for there actions.
 
I am sure others will reach out to you, this is a wonderful forum, actually you might want to take a look at the
Chrons Disease forum.  I just dont know what you have but some of the symtoms you have are similar.
 
So take back your power and I am hoping you will start feeling, many gentle hugs to you and good luck.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

JennerH
New Member


Date Joined May 2011
Total Posts : 3
   Posted 5/16/2011 9:06 AM (GMT -6)   
Thanks for the reply. I was tested for CD; however, it was negative. The test was done when I first had the GI symptoms. I'm not sure if it's possible to get a false negative? I agree, I do need to take back my power. It's been difficult because I was always taught to do what the doctor says. I am asking more questions and demanding to know what tests have been ordered. I also want to know the long term effects of the meds I take. I'm very nervous, because I'm doing a test this week that sounds painful. It measures stomach acid and uses a tube down the nose to the stomach...without any sedation!! Eeek. I guess, I've been through worse.

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 5/16/2011 9:18 AM (GMT -6)   
I really feel for you about the testings that have to be done.  I will be 58 soon and my gp wants me to get a (I think this is the name of it) colonoascaphy I no thats not spelled right, but anyway the only things  I can say about that test is they will knock you out if you want, and believe me, I will be knocked out, if I ever get the nerve to get it.
 
My point is the older you get the more poking and prodding they want to do to you.  Dont get me wrong I realize it is for my own good, and I will get it done, but like you said EEK! and a YUK! to that.
 
I will be keeping you in my thoughts and hope you finally get some answers so you know where to go.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 636
   Posted 5/16/2011 5:07 PM (GMT -6)   
NiNi53 said...
I will be 58 soon and my gp wants me to get a (I think this is the name of it) colonoascaphy I no thats not spelled right, but anyway the only things  I can say about that test is they will knock you out if you want, and believe me, I will be knocked out, if I ever get the nerve to get it.
NiNi53, please get that Colonoscopy, especially if there is any family history.  My husband got his after learning that just about everyone that has passed away in his family in the last 2 decades had colon cancer.  He required 15 biopsies the first time, 8 the second and 11 this last time.  Not to mention a bunch of polyps each time.  He will now go every 6 months for a while to get all the suspicious areas cleaned out.  So far so good, everything has just been precancerous.  I said to him, I dont need to lose my husband at 47 because you are to proud to get it done.  He said it isnt to bad, the prep is the worst part.  Him and the doctor are now good buddies,lol. 
 
JennerH, Have you tried any large universities that might have a teaching staff?  We found that when my brother offered himself as a "study patient" for residents he would have a room full of residenst and specialists from all over the country (and sometimes from other countries) scouring over his charts making suggestions.  He was also referred to the National Institute for Health in Bethedsa Maryland run by the government when no doctor east of the Mississippi could figure out what was wrong with him.  They had to select and approve him after he was referred by a team of Neurologists.  It took a while but he got in.  Not sure what areas they cover though.   
 
I tend to write everything down and request actuall hard copies of all of my tests and test results.  Just so I can stay on top of things.  You could even ask the doctor if you can record your visit so if you have questions you can review what you were told.  Just a couple of things I do to stay proaactive and let the dr know I mean business.  I wish you luck in finding a doctor that can figure things out for you and get you moving in the right direction. 
 
Hugs,
Shell74

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 5/16/2011 5:47 PM (GMT -6)   
Hi Jenna I'm sorry that you're going thru so much. I wanted to say welcome to the chronic pain forum. I don't have any suggestions for you that hasn't already been covered. I just wanted you to know that I am here for you.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/16/2011 9:27 PM (GMT -6)   
Jenner, good luck with your test. Having a naso-gastric tube passed - it's far from the most comfortable thing in the world, but it's not painful. I hope things go okay for you.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.
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