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I need Dr. House :(

I am just about fed up ... sigh  any ideas feel free to answer .. thank you

Symptoms :  from age 13  severe large joint pain - chronic bronchitis and recurrent kidney infections - also enlarged ureteurs

pain subsided for many years

from about 16 - 28 severe fatigue , pretty much periods of lethargy

intermittent joint / back / flank pain

ago 30 ( feb of this year ) -

major symptoms began :

SEVERE pain/stiffness  in most joints - severe muscle soreness/ tenderness /  weakness ( burning in muscles when walking up stairs / writing a letter / typing this post .. sigh   feels like ive been exercising  and its like the burn you get from that...

cold intolerence ( shaking chills )  regular chills and then hot flashes  - sudden blinding headaches - toes and fingers feel like ice - and sometimes hands get blood red and pulsating they are so hot - so i raise up my arms and immediatley feel a colling sensation as the blood goes back into my arms ( sounds insane i know , and it really freaked out my doc )

my hair falls out in handfulls - i have a "rash " that is flat and looks like broken capillaries on my chest nose and splotches on my face --  i trip , stumble , lose my balnce - forget what i am doing - where i put things - what happened 5 minutes ago ...  run into walls ... etc ....

night sweats - waking at night 3 or 4 times to urinate ( sense of urgency wakes me up , its painful)
sometimes when i walke in the morning it hurts to walk my feet are so sore

some of my bones ( mostly ankle and hands ) feel ... well... only way i can describe it is bruised-- very VERY painful

i have intermittent skin sensitivity - only in certain places and it hurts to wear clothes

my legs and arms turn purple and spotty ..

fatigue is debilitating

the sking has now started to peel off my hands and places on my face bc of the turning cold weather

ok .. so thats mostly all the symptoms i can think of .. but thats enough lol


So back in march i lied to the dr and told them i had seen someone else and been dx with lupus  - i needed to know if it was autoimmune and was getting no where w drs

so i got the prednisone --- got myself up to 20 mgs 2 times a day - and EVERY symptom went away!

so i tapered off ....

on week later after i ended the meds i went to the dr and was admitted to ICU with :

Multiple bilateral PEs , calcified  pulmonary granulomas , pulmonary vasculitis , low potassium , low blood sugar, calcified lymphnodes in my lungs


only test that was positive was the lupus anticoagulant

i have been tested for every autoimmune disease on the planet

all negative other than the LA

also had enlarged liver and left kidney

and low red blood count - increased white count


iguess thats about it  other than one of the strangest symptoms :

the ONLY time i have this muscle / joint pain.. is when i SIT ... as long as i am up moving it does not hurt.... when i sit for more than an hour and i am sp stiff i cant walk , joint pain is terrible


any thoughts ? :)




9 Responses
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180749 tn?1443595232
Follow this natural immune system boosting method, and let me know how you feel in 4 weeks and what symptom has benefited.Then we can discuss further.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.

Anulom Vilom pranayam –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 20 to 30  minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.

Bhramri Pranayam -Close eyes. Close little flap of ears with thumb,place  index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Repeat this  5 to 21 times.
December 6 ,2011
Helpful - 0
798555 tn?1292787551
You could have several issues causing all these symptoms.

You mentioned having every autoimune test done. So  I can only assume TPO and TgAb was tested also...?

Ever get Free T3 and Free T4 thyroid hormones tested? Thyroid does effect everything to some extent.

Many of your symptoms are also low thyroid symptoms for many people. Some just have more symptoms than others.

hope this helps
Helpful - 0
1530171 tn?1448129593
Hey Nikki,
There have been millions -not a typo-millions of people that have been tested time and time again for so-called auto-immune and neurodegenerative (suspected) dealing with all kind of specialists and labs and all results come back negative or inconclusive.
There are a few reasons for this.
1. They are dealing with dealing with doctors who are NOT experts in Pathogenic Mycoplasma and Borrelia type of infections.
2. The Doctors are afraid of being "blacklisted" for breaking policy (IDSA is very powerful and dictates the policy) and potentially messing up their careers.
3. The labs are not able to handle the specific tests or the wrong tests are ordered, or the results are wrong most of the time (which is more common!)

If you want to get a Dr. House type of dx and treatment you must deal with experts.
You are not the only one who has similar histories.
Go to ILADS, immed.org,-check with Dr. Garth Nicolson the top expert in this field, find an LLMD specialist and insist to deal with IGENEX Labs as they are one of the few and best reference labs in the world.
These infections are extremely difficult to detect. The pathogens hide within cellular membrane matter, disguising themselves as normal cells and hiding from the immune system and tests.
If you have any questions please post again.
Take care.
Niko


Helpful - 0
Avatar universal
Thanks or posting


Msnova ; I have been tested for ANA.  ..  all if that specific antibody tests for lupus like DS DNA etc.  Had a sarcodosis antibody test. .. the entire panel twice for any rheum disorder plus all the specialized individual tests.  Jo 1 for myositis ... RA. ....


All was negative ..... my Dr did think i had sarcoidosis.  As well as SLE.  

Jihads one DR tell me that BC of how strongly positive my LA test was thy it alone indicated I have SLE. Which is not true. ...

So my Dr is now down to asking things like ' is there ANYTHNG is your history thy we don't know?"

And my favorite so far. .." any family historyof sudden unexplained death t a young age? "

The onlything that makes sense to me is that the hide dose prednisone I was taking when i had my tests screwed up the results.  I have heard that can happen
Helpful - 0
1530171 tn?1448129593
Hey Nikki,
CLINICAL CONDITIONS ASSOCIATED WITH LUPUS ANTICOAGULANT
- capitalized as this is the key-
They are classified in 5 categories and (17) total possible individual connections.
1. Auto-immune (3)
2. Drug exposure (5)
3. Infections (3)
4. Lymphoproliferative  Disorders (3)
5. Miscellaneous (2)
(from Hematologic Pathology on Lupus Anticoagulants)

LAs are wrongly named as such. It occurs in  25% of Lupus -as mentioned in the previous reply and the Anticoagulant part of it is actually the opposite. In vivo it is a coagulant!
They are specific antibodies-immunoglobulins-whose job is to detect, tag and sometimes neutralize pathogens.
Immune  system inefficiencies and weaknesses combined with the presence of difficult to detect low grade infectious pathogenic infections renders the LAs function incomplete.
The lack of proper diagnosis, has allowed clinical implications and inefficient lab diagnostics to  stray away from the real underlying issue.
Look for an infectious disease specialist who has the LLMD designation.
All above listed associations are possibly connected with very hard to detect pathogenic infectious conditions-for the immune system and medical doctors alike. Go to immed.org for more info.
Your multi-systemic symptomology is strongly suggestive of such conditions. Also due to their opportunistic nature their  onset growth may coincide with triggering events such as traumas, illness, vaccinations, injuries etc.,that would explain the peaks and valleys with your symptoms.
There are other secondary factors and cofactors, however, difficult to distinguish from consequential structures.
Wishing you well,
Niko  

Helpful - 0
1756321 tn?1547095325
A study on 500 lung biopsies found 58% (290/500) of pulmonary granulomas were most commonly due to sarcoidosis (136, 27%) and mycobacterial or fungal infections (125, 25%).  In 42% of cases (210/500) no cause could not be determined.

Calcified granulomas are seen in conditions such as berylliosis, syphilis, sarcoidosis, Crohn's disease, tuberculosis, Churg-Strauss syndrome, and Wegener's granulomatosis. Conditions that list both granulomas and  pulmonary vasculitis include Churg-Strauss syndrome, Wegener’s granulomatosis, Necrotizing sarcoid granulomatosis (NSG) - a variant of sarcoidosis. Night sweats and joint pain are listed under all these conditions.

One third of sarcoidosis patients have an enlarged liver. Tuberculosis, Berylliosis and Wegener's granulomatosis also list an enlarged liver as a symptom.

Some of your symptoms can be explained by your current lab findings.

Potassium levels may become depleted if hot flashes or night sweats occur frequently as potassium is lost through perspiration.

Symptoms of potassium deficiency include:

May have no symptoms
Weakness
Muscle spasms, twitching and cramps  
Irregular heartbeat  
Excessive fatigue
Hair loss
Constant thirst
Backache
Skin problems
Tooth decay
Fluid retention
Cold hands and feet
A tingling sensation, twitching eyelids or mouth
Sensitivity to cold
Constipation
Elevated blood pressure
Frequent urination  
Dryness of skin
Recurring chills
Dizziness
Fainting
Numbness, tingling or a burning sensation especially in the hands and feet
Rhabdomyolysis (severe deficiency)
Flaccid paralysis (severe deficiency)

Lupus anticoagulant is a specific immunoglobulin that prolongs the time it takes blood to clot but does not produce a bleeding disorder.  Lupus anticoagulant occurs in approximately 25% with lupus erythematosus, seen in people who take phenothiazine medication, autoimmune diseases, but also can be seen with no other conditions or diseases.

Symptoms of lupus anticoagulant include:

May have no symptoms
Nose bleeds
Bleeding gums
Bruising
Skin rash
Vaginal bleeding between periods
Bloody urine
Skin redness or inflammation

Possible complications of lupus anticoagulants include blood clot in lungs (pulmonary embolism), heart attack, stroke.
Helpful - 0
Avatar universal
Have you been tested for the specific RF?  All of my tests were boarderline or neg until I found a Rheumy that did the specific tests.  Now with treatment I am doing well.

Just a thought.

T
Helpful - 0
Avatar universal
i guess no one  ;(  

thanks anyway
Helpful - 0
Avatar universal
i almost forgot ... this is concerning ....  my joints esp hips pop everytime i stand up
Helpful - 0
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