Any ideas as to cause of my signs and symptoms

[chance588]

I have been waiting for 2 months to see a rheumatologist and have 2 more weeks to go. For my sanity, I would just like some idea as to what I might have. Not knowing has been very stressful. Below is a list of my symptoms, past and present, as well as test results. Any opinions would be greatly appreciated.

ANA 1:160 speckled/diffuse
DNA DS negative
ANTI-SM negative
APA cardiolipin IGA postive 17, IGG and IGM negative
History of protein in urine, blood, white blood cells, red blood cell and granular casts (all seen together on 12 occasions)
Vitamin D deficiency
Fatigue
Seizures (grand mal)
Sun sensitivity- headache, nausea, dizziness and rash on chest and face
Tingling in hands and feet (sometimes painful)
Joint pain all over
Muscle pain
Insomnia
Low grade fever
Facial swelling when I wake in morning
Chest pain
Mental fog
Blurred vision
Internal vibration of brain (only way I can describe the feeling)
Profuse sweating at night

[chance588]

It has been a long time since Ive posted, but I finally have some diagnoses. I have IGA nephropathy, epilepsy and UCTD. She is going to give it 2 years with UCTD and if I dont develop a more definitive autoimmune disease, then thats the diagnosis. Progress. She has placed me on Plaquenil and it is helping a lot with my fatigue. Things are looking up.

[karajo]

Oh this sounds wonderful.  Many of us know how it is to go from dr.  to dr. and only become more frustrated.  A rheumatologist is an internal medicine dr. who went a step further.  The really have to know the whole body.  

Please keep us posted on the biopsy, etc.

[chance588]

I had my appointment, finally! She spent over 2 hours with me. She is looking at several possibilities and thinks I have a couple of things going on. She thinks that I have Sacroilitis. I have right SI Joint sclerosis and pain in buttocks. She also thinks that I might have an autoimmune disease. She is testing for Lupus, autoimmune hepatitis and a few others. She referred me to a neurologist for the seizures and loss of taste and smell. She also thinks that I need a liver and kidney biopsy due to labs from my past. It is really nice to have a Dr. look at the whole picture and not just their specialty! I will continue to update everyone as I find things out. I am hoping my lab tests will be back soon. My next appointment is in July. My worst fear is that the Dr. isnt going to be certain and that I will be waiting another 11 years for a diagnosis. This is the farthest Ive ever gotten in care though. Thank you everyone for you help.

[chance588]

Thank you for the response. The IGA I have in my blood is related to blood clots (different than IgA) although, I developed dry eyes.

I have been taking a prescription vitamin D with calcium. He just retested it and it is at a 30 from 4. Getting better, but not quite there.

Thank you for your response! I am posting my visit with the rheumatologist below.

[karajo]

OK, I'm going to give this a whirl.  IgA is the major antibody of external secretions (tears, gastrointestinal tract and respiratory tract secretions).  Are you having any problems w/ dry eyes or bowel problems?

Your ANA is low (positive).  But I've concluded the level really doesn't mean a thing.  A person can have an autoimmune disease and have a neg. ANA.  

I have lupus and fibromyalgia.  I encourage you to familiarize yourself w/ the symptoms of lupus.  The grand mal seizures could be connected.  Actually that is one of the 11 criteria for a lupus dx.

I concure w/  Weffette, try to not stress.  It only makes it worse.  Drink plenty of water.  Stay out of the sun, eat things that are good for you and stay away from sugar, especially soft drinks.  Get enough rest.  (you're body is fighting).  Hopefully your dr. put you on vit D prescription.  If not, get some vit D3.  

[chance588]

I got my MRI results back today and they are negative. Relieved. Now I am just waiting for my appointment with the Rheumatologist.

[Weffette]

Hello...I am so glad an MRI has been ordered.  Your Grandma has MS? Hmmm.  Well, I hope you don't have MS, but if you do, at least you know why you are feeling the way you do.  Research the different types...there are some that go into remission for long periods of time.  Stress is certainly a trigger...the bubble bath during naptime for your little one would be nice for you.  I hope your husband is patient and attentive and will be your "Rock" to lean on during this time of investigation.
I truly wish you the best.  Let us know your progress!!!   <3
Julie/ Weffette

[chance588]

Thank you for you response. My PCP has ordered an MRI, which I will have on Friday. I hadnt really considered MS, even though my grandma was diagnosed with it at the age of 23. I will let you know how my appointment goes. It has been a struggle to wait. My husband it gone for a week and Im trying to take care of a toddler and 3 dogs. Normally, that wouldnt be a problem, but with all the issues Im having, its been a challenge to say the least. I will try and relax (never been in my nature lol) Thank you again and I will be taking a bubble bath a.s.a.p.

[Weffette]

Hi Chance...
I'm sorry to hear your feeling frustrated and anxious.  I am not a doctor nor a nurse, so I cannot give you any medical opinion.  No one can diagnose you on this website.
The ONLY things I can suggest:
1) remove salt from your diet (swelling)
2) get Vit D supplements but take ONLY as directed
3) be patient and wait to see the rheumatologist
4) ASK QUESTIONS
Have you had an MRI of your brain AND spinal cord to rule out MS ??
Be sure to write down the questions you NEED to ask the rheumy and request the MRI specifically for diagnosing and ruling out MS (there are different types).
Take the list you posted here to your appt.  Breath, relax, take nice warm baths and try not to stress yourself out...that'll only make things more amplified.
Let us know what you find out at the rheumy appt. I wish you the best in finding out what is going on...Weffette