Aa
A
A
A
Close
Lupus Community
1.43k Members
783212 tn?1295031606

I am so miserable

For 8 years  new symptoms have appeared.  Began with migraine and fatigue.   In 2002 Neuro did an MRI and found lesions and small vessel damage.  ANA was positive for systemic autoimmune.  PCP did not respond or recommend a rheumie.  Since then I have hand swelling and turning red, High blood pressure that has effected my eyes ( hypertensive retinopathy).  I now have a rash on my forearm, under arms and neck.  Just small blotches that are red most times.  I have had it for 3 months and tried every cream and ointment there is.  My skin itches and my mouth gets dry alot.  So much so, that I choke from the back of my throat being so dry.  My bones hurt which xrays showed osteoarthritis.  I do have a vitamin d deficiency.  I have been diagnosed with GERD.  Sometimes the acid will wake me up choking.  My bowels are horrible.  Always in the bathroom.  I have autoimmune diseases in my family.  Rheumatoid arthritis to Scleroderma.  Yet, my recent ANA was said to be normal......the doctor didnt give me the actual numbers.  All my inflammation tests are normal yet as we speak my fingers are swollen.  My last PCP would not give me a referral to a Rheumatologist because my arthritis wasn't Rheumatoid Arthitis????  I hurt all the time...I cant sleep, Im in the bathroom all the time.  This rash keeps showing up in different spots.  I don't understand how a person can have a family history of auto immune, plus all these symptoms and doctors don't maybe wonder if they are connected.  So, I am now with a new doctor.  Unfortunatley, I can't get a appointment with a rheumie without a referral.  So, I found a new PCP who works in the same hospital as a Rheumie that was recommended by the Scleroderma Foundation.  Is anyone else experiencing any of this?  Am I maybe over reacting?  My second rheumie thought it was lupus but whatever test he preformed was normal.  Sooooo, what is wrong with me??!?!?!?
5 Responses
666513 tn?1256921055

I wish I could give you the answer you need. I'm having some of the problems you are and am still searching myself.

I'm sure glad you found a different PCP, because his reaction to you was ridiculous. He should have referred you to a rheumatologist. They specialize in all sorts of autoimmune disorders, not just rheumatoid arthritis.

I'm not sure how thorough the rheumatologist was, but from my reading (I'm certainly not an expert) Lupus is not always easy to diagnose. Some people with Lupus will not test positive on an ANA test, so if that's all he did, that really doesn't prove anything.

Also, from what I've read, ypu may get different test results at different points, so you may need to be tested several times before showing up positive for am autoimmune disease.

The really dry throat sounds like it could be Sjögren's syndrome, which has similar symptoms to Lupus.

All I can say is try not to get too down, and ask your PCP for another referral to a different rheumatologist.

Keep on trying.

Take care.

Mar
434278 tn?1324709825
Hi there, I'm thinking I've talked to you before.  I'm so sorry you are still having problems w/ no answers.  I know how frustrating that is....been there!

I have a few questions though.  You said you had lesions on your brain.  Did the dr. have an explaination for that?  I know I don't understand all there is about lesions on brain stuff.  Also, you said in 02 your ANA was positve for systemic autoimmune.  What was the titer and pattern at that time?  

I'm going to give a brief overview of a few things that I would like for you to look over.  They might help you weed some possibilities out.  Although I know this description could not begin to paint a vivid picture of some of these illnesses...such as chronic fatigue.  


Lymes:
fever, headache, chills, severe muscle pain, fatigue, nausea, vomiting, rash, cough, lymphadenopathy (?), arthralgia (?), stiff neck, erythema migrains (?), leukopenia (low WBC), thrombocytopenia (low platelet ?),elevated AST, elevated ALT & anemia

Rocky Mountain Spotted Fever is another possiblity:
all of the above except no stiff neck, no erythema migrains, and no leukopenia.
(I ended up testing possitive to RMSF) I was a very sick puppy last year. Fibro, lupus and RMSF

CFID:
fatigue, headache, short-term memory loss, muscle pain, difficulty concentrating, joint pain, depression, abdominal pain, lymph node pain, sore throat, lack of restful sleep, muscle weakness, bitter or metallic taste, balance disturbance, diarrhea, constipation, bloating, panic attacks, eye pain, scratchiness in eyes, blurring of vision, double vision, sensitivity to bright lights, numbness or tingling in extremities, fainting spells, light headedness, dizziness, clumsiness, insomnia, fever or sensation of fever, chills, night sweats, weight gain, allergies, chemical sensitivities, palpitations, shortness of breath, flushing rash of the face and cheeks, swelling of the extremities or eyelids, burning on urination & hair loss.
reported to follow a # of infections like Epstein Barr, Mono, hep C, lyme, etc.

Fibromyalgia:
muscle pain, morning stiffness, insomnia, musculoskeletal pain, joint pain w/o swelling, fatigue, tingling, pricking or numbness, skin tenderness, light headedness (dizziness), fluid retention, stress or anxiety, poor memory, vocabulary problems, tender points, irritable bowel, chronic headaches, jaw pain, painful menstration, restless leg syndrome

Lupus:
fatigue, hair falling out, sores in mouth and or nose, sores in head or even on your face and other parts of your body, joint pain (sometimes w/ swelling), Raynauds (in some), cold intollerance, occasional hot flashes, muscle aches, nausea, diarrehea, severe headaches, tachycardia, weakness, heavy feeling on chest, abdomen swells, elevated ANA, rash on face. (to name a few)  There can be organ involvment such as heart, lung, liver, bladder, brain, etc.


MY ADVICE TO EVERYONE WHO IS GOING THROUGH TESTING FOR LUPUS >>>> SPEND TIME IN THE SUN PRIOR TO THE ANA TEST.

I was super sick for over a year...thought I was dyeing.  Then I read right here on medhelp.  It was the magic bullet that finally got me some medical help.  My ANA went from 640 to negative to 2,560.  They had to pay attention to that.  I didn't burn myself, I just spent a respectful amount of time.  I am fair skinned and burn really easy.  DON'T BURN YOURSELF!  Use common sense.
783212 tn?1295031606
Thanks for your response.  It's a little strange but my symptoms are bits and pieces of all of the ones you listed.  Just add the recent rash that I've had for about 2 or 3 months. As for the lesions it said something about ischemic injury, small vessel damage and 2 lesions in the white matter. All of this is on the left side of my head.  I have gone through so many doctors i am really in a bad  place mentally.  I think I would be relieved just to get a diagnosis period!  My auntie has scleroderma and many of our symptoms are the same.  Gerd, migraines, fatigue, rash, digestive issues, high blood, insomnia, joint and muscle pain and swollen red fingers.  It took her a long time to be diagnosed also.  I am noticing that instead of looking at the issues as one they treat each with different meds.  And since the PCP is the one who makes the referral .....if they don't catch on that something is strange they won't give the referral.  I don't want to sound like a hypochondriac.
434278 tn?1324709825
Keep us posted.

Praying for you sweetie.
Avatar universal
The fact that your PCP didnt refer you to a rheumie with a positive ANA and a family HISTORY of autoimmune disease is ridiculous, but - sadly - not uncommon - good medical help is hard to find.
An ANA can fluctuate - pos to neg - different patterns,etc - from one appt to another - any good doctor knows that.  ANd, yes you can have inflammation that is visual without it showing on a CRP or sed rate test.  Ive had NO visual swelling and a sed rate of 80(normal 0-20) and a CRP of 14 (normal 0-3)...it can and does happen.  You definately seem to have signs of something autoimmune going on - particularly with the rashes that dont respond to ointments (VERY common in lupus) and the inflammation.  GERD is also seen in lupus patients alot (though not on any criteria list).
As for the ischemic lesions - I have them also, and it has been dianosed as CNS lupus (or lupus in brain and central nervous system - vasculitis).  Though this may NOT be what you have (CNS lupus is not very common) you could have certainly had inflammation in the blood vessels  (ischemia) in the past.
I am praying your PCP gives you the referral you need - be persistent - and NO, your symptoms DO NOT sound like hypochondria - youve had positve blood and scan results....dont give up - it took me 6 years for a diagnosis, but I finally was and now I have to be treated agressively as it has affected my organs....hang in there!!
Lauri
PS - I dont mean to be disrespectful - but I would NOTTTT ever recommend anyone who suspects that they have lupus to spend time in the sun!!!  It is the number one NO NO for any lupus patient!! It truly can make someone VERY sick....sorry :) thats just my opinion...
Have an Answer?
Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.
Smoking substitute may not provide such a healthy swap, after all.