Discussions By Condition: I cannot get a diagnosis.

Any ideas for a diagnosis

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Anonymous
  • April 30, 2007
  • 02:53 AM

Ok, this will probably get long but I will try to keep it short.
My husband began having abdominal pain just over 2 years ago. He is 34 now but this started when he was 31. He was hospitalized for elevated white blood count and they thought possible Diverticulitis but it was right side not left sided pain which is more common in Western cultures due to our diet.
So, they've done every test under the sun.

So far he has had or been told:
Gallbladder removed due to possible gallstone (it was a healthy galbladder according to the path reports)
Portion of sigmoid colon removed due to possible Diverticulitus (it was a healthy colon according to the path reports)
Other diagnosis include (which have not been ruled out but are now considered low on the totem pole..also I apologies for misspellings)
Porphyria, Crohns, Ceiliac, Lupus, Cushings, Lyme, Whipples, Wilsons, Clogged bilary ducts, exposure to depleted uraniume from the military, buldging dics in the T7...the list goes on
He has had tons of blood and urine work, xrays, Ct Scans, MRIs, colonoscopies, endoscopies, upper GI series, hydascans, CT Milograms, Ultrasounds, EEGs, EKGs, EMGs, Angiogram...the list goes on.

Abdominal Pain (number one and worse symptom) can be right side or left side
Extremely High Blood Pressure when he has an attack of pain
Developed a fatty liver
Facial Rash (but not a butterfly rash...it runs down the middle of his face)
His inner ears will flake (kind of like if you washed your hair and conditioner was left in your ear and dried)
Neuropathy in his legs.
Sore joints in his knees and sometimes his wrists
Occasional mouth sores
Occasional stuttering (although this could be from mini strokes due to the level of pain and elevated blood pressure)
Short term memory is becoming worse

As his doctor stated, clinically he could fit into 10 different categories but the test results are just not there. He does have elevated porphyrins but not enough to prove anything. His liver enzymes are sometimes up but not much. sometimes there's elevated white count or sed rates but not always and those could be for various reasons. They claim he has a very healthy pancreas and appendix.
So, any ideas. I feel like I've look at every rare disease there is out there on the internet. Again, he could fit so many categories.

PS - on a side note. I love to write and have heard so many horror stories of patients that went years waiting for a diagnosis. Often being told it was a conversion disorder or "all in their head." So, at the encouragement of friends and nurses, I am writing a book of encouragement and hope for those still waiting to be diagnosed. Still waiting for an organic answer to their symptoms. If you know someone that would like to share their story for me to include, please let me know. I will check this thread often.
Thank you

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6 Replies:

  • First off, I want to say how sorry I am for your husbands pain & frustration. This is such a terrible thing to deal with (not knowing whats going and Dr's confused as well). Your husband and I are in the same boat, just different symptoms.....WE HAVE NO DIAGNOSIS! I've been dealing with dabilitating symptoms for years now and they're just getting worse and worse. I'm 30 years old, I'm a hard worker and love the outdoors. I never minded cleaning the house, I love hanging out with friends etc until recently, I've been out of work since 3 weeks ago. All of these symptoms slowly manifested over 10 years to the point where I can almost do nothing. I would love to be included in your book to tell my story, I think it's a great idea. Please let me know, or I can post it here.My thoughts and prayers are with you and your husband, I hope someone here can help him.
    Anonymous 42789 Replies Flag this Response
  • You say this symptoms only started 4 years ago? The pain in his feet and hands has he had that off and on since he was a teen? Or is it worse when he is hot or cold? Some of the symptoms you are describing sound like Fabry's disease. But it usually manifests first as a burning tingling pain or discomfort in the hands and feet at about 13 or 14 years old. Skin rashes are common and it causes a slew of things and affects every patient a little differently. There is a long list of things it causes but not everyone who has it has every symptom. If he has had, a simple blood test will show the enzyme deficiency that is Fabry's Disease. My husband has Fabry's disease and the sharp unknown abdominal pain of his was recently diagnosed as a nerve pain after seeing a neurologist. He has neuropathy tingling and burning in the hands and feet as well. But those symptoms appeared when he was 13 years old.
    Anonymous 42789 Replies Flag this Response
  • Honey, you husband is havig symptoms of ME please go to www.ahummingbirdsguide.com L side of home page is symptoms link...aftter that go to bottom of first paragraph, there is a 2 page summary of symptoms...Keep in mind he doesn't have to have every one but his are already on the sx list...good luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • stroke-like symptoms are part of ME I have been a nurse for a long time and have never heard of stroke-like symptoms with any disease...Look at my post 3-26-07 "It's a mystery until we solve it" There is info on the second post re stroke sx and my experience this past Fri night in the ER PLEASE ...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Thank you for the website. I have bookmarked it but unfortunatly, many of the Hallmark symptoms do not match my husband. A lot of the secondary do but as the doctors have said, clinically he could be diagnosed with at least 10 different diseases and syndromes. The problem is narrowing it down to primary and secondary symptoms because his condition keeps changing. I noticed that just about every symptom imaginable is on that website so I can only imagine it must be an enourmous challenge to actually diagnose someone with ME.Thanks for your assistance.
    Anonymous 42789 Replies Flag this Response
  • abdominal pain...nausea...facial rash...dry skin...sore knees wrists...fatigue....mouth sores...short-term memory loss....stroke-like sx Please go back to ME site...all of his sx are there...I'm not trying to shove this down your throat...but there are hundreds of people on this site with ME symptoms who have been attempting to get diagnosed for years...I am one of them ME is neurological but affects several body systems like musculo-skeletal, GI, Immune, Cardiac, respiratory and some others...Oddly enough, almost everyone that writes here with ME sx states that they have been sent to psychiatrists or that everyone thinks them a hypochondriac...there is no time limit for this...I have been sick for 4 years but had my first bout of upper body flushing 10 years ago...I'm off to Dr. in am...they moved my appt from 2 mos to 2 days when I called his office with this info...Please read "It's a mystery until we solve it" mommy cat That is my post...I'm concerned over your husband's stroke-like sx whick I experienced on Fri for 10 hrs...There are few, if any diseases which have stroke-like sx except having a stroke or TIA...Best of luck and please have a closer look at the ME site...mommy cat
    mommy cat 1654 Replies Flag this Response
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