6 months and no diagnosis- any ideas?

[wowosmama]

Hi! My name is Elisabeth and I've been sick for 6 months after taking a new blood pressure medicine (vasotec). I was only on it for 3 days but I got sick one day to the next after taking it. The problem is I still don't have a diagnosis. Main symptoms are, painful subcutaneous nodules, ringing in ears, constant stuffiness and sinusitus-like symptoms, tremors (noticeably in fingers), pain after eating and when I haven't eaten for a while, chest wall pain, swollen painful joints and just general pain everywhere. The problem is, only abnormal results are:
-high haptoblobin levels
-blood in stool

What they've done:
chest and abdominal X ray
abdominal CT scan
MRI and MRA of the brain
EEG, EMG in the arms
Carotid artery ultrasound
complete blood work including thyroid, ANCA, ANA
rule out syphilis and Lyme's disease
colonoscopy

Recently they just did SED rate, thyroid and ANA again. All negative.
They don't know what high haptoglobin means without anything else being high. SED rate is miserably low (3) and this makes the doctor act like I'm not even sick. Has anyone been in a similar situation- no diagnosis, and apathy on the part of the medical community when the blood work doesn't give any clues? It's not bad enough to be sick, but I have to keep convincing them that I'm sick on top of that.
Last detail: had a psych eval and the psychiatrist said that this is not psychosomatic; there is no way that the psyche can cause these symptoms, I definitely have some medical problem and they are not doing enough to try and figure out what it is. Any response is appreciated!

[wowosmama]

Here's more info on symptoms:

October 2002

Right after vasotec: involuntary eye twitching, fatigue, palpitations (90-100), then chest pain, physical panic attacks, night sweats. Went to hospital, they found fever, palpitations, high BP, but nothing else- adverse drug reaction. Got off vasotec. Then incredible pressure in the head, like an elastic band tightening around the head, sinus pressure, high BP, pressure in the chest- didn't feel like I could breathe. Had to start sleeping propped up- this releives the chest pressure a little. Got back on labetolol (which I was on before the vasotec), then it just feels like a big head cold- runny nose, sinus presure, head pressure. After 3 weeks I get a diagnosis of sinusitis- there is a little shift in WBC. The pressure in my head then "breaks" and travels down the left side of my body. I feel numb on the left side and chest pain big time. Get checked out, EKG, CT scan of the head, nothing. Doctor says it's a virus. Now I have ringing in the ears, sinus pressure, ulcerations and bleeding from the nose, spitting up blood,major weight loss (25lbs in a month and a half) sensitivity to light and sound, buzzing sensation throught the whole body, can hardly move, nausea, diarrhea. Only thing abnormal is high haptoglobin and blood in the stool. Ibuprofen makes it a little better, but it's still very bad. Swelling over left ribcage and into left upper quadrant- abdominal CT scan normal.

January 2003:

I get off labetolol, then gradually get off all the meds they put me on (ibuprofen, lorazepam, ambien). Now I am only on the antidepressant Lexapro but still feel sick as a dog although not depressed. However, there was definitely a bad reaction to labetolol going on because once I stopped it I felt better overall and the disease (whatever it is) goes into remission a little bit for a month.

Mid Feb 2003:

Another flare-up. Persistent nausea, muscle twitching, more weight loss, painful bruising on legs, pressure in the sinuses like you wouldn't beleive- constant pain. Also very painful temples.

March 2003

Doctor does Sed rate, thyroid, ANA again all negative.

April 2003:

I'm set up to see a dermatologist about the subcutaneous nodules around ribcage area (started when this first happened), then a rheumatologist. Hopefully someone will figure something out.

Biggest barriers to treatment:
- Doctors don't want to believe that vasotec had anything to do with this,
-they're hesitant to do a biopsy on one of these nodules even though the blood work hasn't told them much,
-I have to convince them that i'm sick!They are taking this way too lightly.

best case scenario: fibromyalgia, CFS, panniculitis without vasculitis

worst case scenario: Wegeners,or PAN (polyarteritis nodosa). 15% of Wegeners are not ANCA positive and ANCA was done when this first started, not recently. 20-40% PAN patients have normal sed rates. Maybe some kind of vasculitis anyway.

Give me any other ideas please. Self diagnosis is very risky but I seem to be the only one who cares about my own health, and with the big weight loss these doctors should have a high index of suspicion - that's my opinion, I welcome yours!

[Catherine with a C]

The only thing I have to say is that I cannot believe that you are having to go through all this. I cannot even imagine what you are going through. I have no answers or even suggestions; except to insist that Dr's. start doing more testing. I feel for you......you sound very committed in participating in your own recovery!! Thank goodness! 'cause, as you stated no body else will!!
Keep the faith. I will send some good energy your way.
Until later, you will be in my thoughts & prayers.
Catherine

[Dramaqueen]

Hey, sorry I don't have an answer, but just wanted to say, I know how you feel. I have been undiagnosed for a year and a bit and it's just awful. I hate not knowing what I have and when it's going to get better.

Anyway yeah, just thought i'd let you know there's others here in the same suituation.

[zuzu8]

Hi- The elevated haptoglobin with otherwise normal bloods is interesting to say the least!
You are incredibly well-informed (probably at this point know more than the doctors) and although I have been fascinated by medicine my whole life (started reading med literature
and books when I was in my teens "just for fun"...I'm now 59)) and am pretty knowledgeable myself, your "case" is truly truly puzzling. Are you, by any chance, the person who wrote to an online doctor named Stoll back in Feb? If NOT, then there is someone else out there going through EXACTLY what you are! You've got to be one and the same, no? Even if not, this Dr. Stoll's only advice seemed to be "keep reading your PDR!" God save us from online physicians.And speaking of physicians, if yours are shrugging and scratching their heads and not researching further on your behalf, and you have to convince them that something is really going ON here, get OUT. Find someone else...get all your multiple records and find a better diagnostician or at least someone who is intrigued by your case and is as tenacious as you are at getting to the bottom of it. (forget comapssion at this point!) What you need are answers and a doctor who is truly "in" this with you, working as a team.
I feel so helpless here really, can't even steer you anywhere you haven't been yet, or about to go. Let me know what happens with rheumatologist.
zuzu

[This message has been edited by zuzu8 (edited 03-30-2003).]

[This message has been edited by zuzu8 (edited 03-30-2003).]