checked for Whipples today

[hoping]

New rheumy is being comprehensive, wanted to have GI doc do another upper GI scope on me this time to check for Whipples Disease (a very rare infectious disease) that can cause wt. loss, diarreah, joint arthralgias, and sometimes impact other organs like heart and central nervous system.  Yet it is quite treatable and curable with antibiotics given for 1-2 yrs.  Will take a week to get biopsies back.  One LONG week.

My spasticity (uncontrollable repetitive muscle contractions, sometimes twitching-- sometimes full blown violent jerking) is way out of control and SO painful.  Began trouble with this when developed lesion on upper spinal cord 3 years ago (Transverse Myelitis).  It was eventually managed by implantation of medication pump which delivers Baclofen drug straight to spinal cord.  Yet now that amount which is already high is not high enough and doc. is reluctant to keep increasing it without a concrete change in my diagnosis.  (If I was in a SS flare it would make sense that spasticity spikes.  It spikes up with any kind of major life stress or infection) Can't get into anyone to see the spasticity as 2 of my docs are on spring break/vacation.  Neuro appt. is APril 8th.  Do see rheumy on the 23rd. Living on heavy meds and warm packs until then.

If Whipples is not the source, then may check for Sjogrens with another lip biopsy.  I will show my rheumy my recent thoracic MRI which showed possible cysts etc which "might need follow up with abdominal / pelvic CT or ultrasound."  I don't care for the way my primary doc. said cysts on kidneys are common and no big deal.  Without proper follow up test, we can't assume anything.  I am also concerned with recent development of a cough, that with this wt. loss might be potentially lymphoma.  But I believe all blood work is in good shape. Whipples does mention a cough as potential symptom.  Whipples has a plethora of symptoms, some I have, some I don't have.  Doesn't account for dry mouth & eyes & the horrific reflux I'm having.  Who knows? 

So as usual I'm puzzled as ever,
Karin

[Cheryl]

Karin,
   Isn't it awful that you have to hope to be diagnosed with a rare disorder so that you'll know help is on the way!    I don't know anything about Whipples, but the treatment surely sounds doable.   A week is a long wait.   We'll want to hear what you find out!  Hang in there.
Cheryl

[irish]

karin, It is such a problem knowing whether to wish that you have this disease or wish that you don't. Makes it so hard when the docs don't find out what you have. I am assuming that they have checked you for Lyme Disease which can give some horrendous neuropathy.

Have they sent you to an immunologist or an infectious disease doc for further assessment. Seems like this would help them cover more bases. Keeping you in my thoughts and prayers as you strive for comfort and peace of mind while waiting for an answer to this problem. Irish

P.S. Has anyone done blood work for Wilsons Disease which is related to copper metabolism?

[Epson]

Karin,

I hope you get a deffinate diagnoses soon, so your symptom's can be address.  I alway thought Wipples disease was an uncontrollable urge to squeeze Charmin batroom tissue.

[wednesday mc haggis]

karin

thoughts with you in this long week, horrible having to wait, but good rheumy is being so thorough

T x

[hoping]

Thanks all,
Trying to keep mind off of symptoms.  Lovely day here in mid 70s, actually got outside in yard and cleared away some dead flower debris.  Hand real sensitive now, but so nice to see tulips popping through the ground.  Had copper test drawn, then found out it changed on way drawn, supposed to have it re-drawn.  Lyme disease was checked when lesion was identified and came out negative I believe.  Have seen only neurologists and just recently rheumatologists.  Whipple's disease treatment is just antibiotics long term. Here's a little about Whipples: http://microbiology.mtsinai.on.ca/bug/TW/tw-dis.shtml
That's all for now,
Karin