I have been trying to figure out what is wrong with me for a long time.  I'm 51 year old female and have always had a low threshold for discomfort like heat, sun, exerting myself, noise blah, blah, blah.  I could never stand the summer or the beach and always felt different than other people.  I always went under the assumption that I had chronic fatibue syndrome because of the exhaustion I feel every minute of the day.  I also am a redhead so I thought the heat intolerance and itchy skin was because I was so fair.  I also hate mosquitoes - I am eaten alive if I only step out of my house and go to the car (or is it that I react so horribly that I think I've been eaten alive).  

This past year starting Jan. 2011 I had excruciating back pain and felt like my legs didn't work anymore (like MS or something) and terrible sacrilliac joint pain.  Went to orthopedist and had scan of back and was  told it was herniated disc l3,l4.  okay figured that out.

Next was couldn't swallow, trouble breathing, mouth ulcers, blisters on lips, sore throats all the time, anaphalaxix type reaction to foods I normally would eat, shampoo, water?  and the worst is the fatigue.  I was going insane.  Allergest diagnosed chronic urticaria (autoimmune).  Allergy to birch, ragweed, grasses with oral allergy syndrome to boot.  

I feel I am much sicker than Chronic Urticaria.

Symptoms:

Allergies above
Headaches
Constipation
GERD
Mitral Valve Prolapse
5 miscarriages (4 lovely children now)  never diagnosed with any     problem for this.  It took 6 years to have 1st child.  
Dizziness
Brain salad (diagnosed ADHD and told this is why I'm tired)
Blood pressure is high in the last year since I've been flushing so much and I do take stimulants.
Flushing
Nausea

I went for a tryptase test today.  

Recent blood test showed positive ANA 1:1260 and 3 weeks later 1:640 and Homogeneous Pattern and then unusual SPINDLE Pattern detected.  4 doctors told me they don't know what spindle pattern means.  Also I had Lyme Dis. Test Elisa band P66 present abnormal and Western Blot band P23 present Abnormal.  Do I go to a Lyme Literate Doctor?

Could spindle shape mast cells be what this means?  I am so frustrated that I can't get a straight answer and have felt so sick for so long.

I've seen neurologist CAT scan fine
Gastroenterologist GERD
Had endoscopy and colonoscopy last week.  All clear
Rheumotologist Neg. to SLE, Sjogren's, Rheum.  all of them
Primary Card Dr.
Neuropsychiatrist you might have ADHD from your symptoms
Orthopedist
Allergist - CU

Thanks for listening.

Please read this paper: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

I also have Mitral Valve Prolapse. We tend to have Hyperadrenergic POTS. This type of POTS is associated with Mast Cells problems, and high BP. You may not fit, but if you do, that paper will answer many questions for you. Most of your symptoms fit!

Gail

I forgot to add that I have had a weakly positive ANA result as well, but mine was a speckled pattern. Several people have mentioned having the same sort of results.

Hi PJP,

Welcome to the group!

Perhaps you (or your doctor) are getting different test results confused... there's no such thing as a "spindle-shaped" ANA.  Here's the list of patterns:

- Rim
- Homogenous
- Speckled
- Nucleolar
- Diffuse
- Centromere

http://www.fpnotebook.com/rheum/lab/anstngptrn.htm

My pattern is "speckled," which is the most common and least suggestive of a specific illness.  (Although a positive result... 1:160 or higher... in the presence of suggestive symptoms... is a pretty sure sign that you have an autoimmune disorder).  In the last three years mine has been as high as 1:320 and as low as negative (less than 1:40).  There doesn't seem to be any connection to how bad I feel.

Like you, I have Chronic Autoimmune Urticaria, but my symptoms go WAY beyond urticaria.  The worst have been anaphylaxis, dizziness, abdominal pain, pregnancy loss, joint pain, fatigue, anxiety, dry everything (skin, eyes, mouth), unusual bleeding, and nausea/diarrhea.  99% of my tests are perfectly normal.  Most doctors think I'm a complete whacko  Thankfully, now that I've found a couple of good doctors, figured out my triggers, and determined the right doses/types of medications I am MUCH more stable and living a pretty normal life.

It sounds like you've already ruled out a lot of things (which is great).  Have you tried using antihistamines?  They're not a cure-all for me, but they do help a lot... that's a strong sign that you're dealing with a mast cell disorder.

Heather

Pamelitis lol. I'm going to tell my sister with the same name that one as she also has MCAS

The spindle shaped mast cells is a term for bone marrow biopy or path specimen where they biopsy mast cells not from the ANA blood test.

Hope you find some stability and answers

You know, with all of the issues you´ve got going on PJ I really think you´ve got a case of an autoimmune masto.   I really think you need to see an authority especially with this "spindle" shaped ANA result.    Masto does such weird stuff why couldn´t this be just one more weirdie it does???   I think this is something that you could write to Dr. Castells about and ask her opinion since she is an immunologist.   She may have heard of this spindle shape already.


My 2 cents!

Lisa

Thanks Pamela, look forward to hearing how you get on with Dr Castells.

Ruth