Some unknown collagen vascular disease.......

[kellybrown123]

2 yrs ago i developed a rash on thigh but it was under the skin deep reddish purple but only appears in cold weather so had a punch biopsy done which showed work up of collagen vasular disease.Since then seen my primary doc for physical ekg was abnormal with lining of heart thick meantime blood work was positive ana and titer of 1:160 speckled pattern found out i was hypothyroid taking synthroid for it and b12 and vitamin d difiency which i took 4 shots the b12 went through the roof at 2000. sent me to gaestrenterologist for endoscopy which showed i had giardia a parasite took antibiotics which has cleared up now. been seeing a rheumy for this undiagnosed connective tissue disease i've had brain mri which only showed mastoid air cell was inflammed and bone scan which showed nothing. my symptoms are as follows: extreme back pain when waking every morning to the point i have to wash my hair at night because of the pain to blowdry it.headaches, tingling and burning sensations all over body, left leg can only lift so far up because of the pain,muscle twitches , spasms in toes that draw up with pain,hearing loss in right ear, swollen lymph nodes in neck and base of skull ,chest pain,heartburns daily,fatigued all the time, weakness in hands makes it hard to write, sunlight sensitivity break out in rashes also note at 11 i had bacterial meningitis adn now years later i develop all the symptoms .could having bacterial meingitis caused the symptoms over time? still no diagnosis searching for my answer hopefully very soon i will get that...... over the course of 6 months bloodwork showed cbc/diff/pl neutrophils % at 91.4, uninalysis was wbc esterase abnormal,wbc was 6-10 abnormal,tested for rnp,smith,sjogrens and antiscleroderma-70 antibodies which all were negative, sedimentation rate has always been high around 24, had positive pernicious anemia test ,igm serum low at 43 mpv at 4.4..... any suggestions please help.

[TheLightSeeker]

Hi Kelly and Happy New Year to you! I hope this year you will be able to resolve your health issues.

Scleroderma has many different variations.
One of the main presentations with most variations is board-like hardening
and immobility of the skin in the affected areas.
Sine Scleroderma is one type that does not affect the skin.
Also Raynaud's disease is present in  about 90% of Scleroderma cases and usually one of the first symptoms to appear.
Scleroderma may be referred to as mixed connective disease when it
occurs with SLE and other A/I conditions.

Why do you think you have some type of scleroderma?
If you want , list the symptoms and findings that make you suspect it
and send them in a pm to me.
And yes, your tests for antibodies and rheumatoid factor could be negative and still have some type of scleroderma. At the end I think it's a clinical dx
Meanwhile why don't  you check for online images and pictures of scleroderma to see if anything resembles what you have.

Blood Pressure is a variable indicator, that must be checked at various times during the day for several days and then averaged out.
You may be on BP meds unnecessarily, and this could be an additional
burden for your body. Look into it.

Your Rheumie doesn't seem to give you any confidence that he/she is
willing to listen to you. That is unprofessional.
Can you get your PCP to make you an appointment with another Rheumie for a second opinion?  Hopefully someone nicer and who listens!!

If I were you, with what I know, I would go to a Holistic doctor or a Naturopathic doctor who has a good reputation, and have him/her act a Health Consultant/Coach. Cost is consideration, but if it is feasible,
that is an option that holds promise for better evaluation and treatment.
You situation is, as I mentioned before, complex for most conventional doctors, so don't be too surprised if you find you're getting tossed from one specialist to another with out getting anywhere.

Take care and pm me any time you need to.
Niko

[kellybrown123]

Hello btw!! wanted to wish you a HAPPY NEW YEAR'S!!! Well i've seen a rheumatologist which without blood work he said he was ruling out lupus which i thought was CARZY But anywho i have some type of joint pain daily during the summer i always have a rash either on my chest,arms or face this past summer i deveolped a blotchy rash that went across the bridge of my nose came to meet my cheeks asked my rheumy he barely even looked at it and said no i don't think it's related to lupus.I'm sending you for an mri of spine and brain to rule out MS. I have dry lips since like forever theres a dry spot that's been there for years.Right just since the change of weather getting colder i've developed red spots on upper thigh but when exposed to coldness that turn purple feels like lumps under skin don't itch or bother me just there really weird.Blood pressure is usually always elevated last night it was 145/105 taking meds for that. Fatigued almost everyday even with getting plenty of rest.Very photosensitive not a summer goes by that i don't have a rash.I'm hypothyroid with 2 nodules.So question i've read alot about scleroderma i have lots of the symptoms can you have a negative blood test for it and still have it??? Just this year i have hard scaly places over the joint of my big toe now on my side of left foot it's become very dry spot but doesn't itch always had issues with my skin for at least 3 yrs...................

[TheLightSeeker]

Sed rate at24 is high for your age but...
An elevated sed can indicate an infection or show in:
Lupus, TB, Pelvic Inflammatory Disease, Heart Disease, Pregnancy, Nephritis, Anemia, RA, Gout, hypothyroidism and hyperthyroidism.

Also, some drugs can cause a sed increase like: Heparin, Coumadin, Birth control pills.
Menstruation and  high cholesterol can also cause high sed.  
This test is not diagnostic, only  indicative and in your case your pos. anemia test may be the reason SED is high.

The abnormal esterase urinalysis test also called Leukocyte Esterase,
is indicative of infection-urinary track infection.
The pos ANA 1:160 speckled pattern is a weak positive for sle/lupus
but there's not enough in your post for a conclusive diagnosis.
There are over 100 A/I diseases and there's a wide overlap in symptomology from one to another.




  Self test (if more than 3 positive, pursue it further for SLE/Lupus)

Have you ever had achy, painful and/or swollen joints for more than three months?
Have you ever had an unexplained fever of over 100 degrees for more than a few days?
Have you ever experienced persistent, extreme fatigue/exhaustion and weakness for days or even weeks at a time, even after 6-8 hours of restful night time sleep?
Have you ever had sensitivity to the sun where your skin "breaks out" after being in the sun, but it's not sunburn?
Have you ever been told that you have a low blood count(s) - anemia, low white cell count or a low platelet count?
Have you ever been told that you have protein in your urine?
Have you ever had chest pain with deep breathing for more than a few days (pleurisy)?
Have you ever had a prominent redness or color change on your face in the shape of a butterfly across the bridge of your nose and cheeks?
Have you ever had a seizure or convulsion?
Have you had any sores in your mouth that lasted for more than two weeks?


Diagnostic criteria for Lupus SLE (from the Lupus foundation)

4 or more of these 11 symptoms will help determine diagnosis.
Recently, a new Lupus diagnosis criteria was adopted requiring 3 of 10 symptoms similar to the ones below, and appropriate screening of Anti-Nuclear Antibodies (ANA) blood test to make final diagnosis.

Malar Rash

Rash over the cheeks

Discoid Rash

Red raised patches

Photosensitivity

Reaction to sunlight, resulting in the development of or increase in skin rash

Oral Ulcers

Ulcers in the nose or mouth, usually painless

Arthritis

Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)

Serositis

Pleuritis or pericarditis (inflammation of the lining of the lung or heart)

Renal Disorder

Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)

Neurologic
Disorder

Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects

Hematologic
Disorder

Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

Antinuclear
Antibody

Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.

Immunologic
Disorder

Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).

Unfortunately the answers are not easy-I'm sure you know this by now.
Patience and perseverance will pay dividents.

Also refer to my previous reply again. There's a lot of valuable info there.
Consider putting less effective value on the Dx as the treatment prognosis
is rather poor,for it is designed mainly for symptom management.

Wish you well.
Niko