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Posted 7/14/2015 12:28 AM (GMT 0)
Hi :) A few people asked to update when I heard anything. I went for a follow up my new family physician. I don't have Celiac disease. No Crohns. No MS. No Lupus (even though I wasn't actually tested further than the ANA). My doctor does not think I have Fibromyalgia, I don't meet the criteria. He looked back throughout all of my former tests and is going back to the MRI I had done 3 years ago - I have considerable degeneration/healed trauma in my cervical spine. I'm going to meet with a podiatrist regarding the area on my ankle that has zero sensation. I'm also going to see a Chiropractor for some testing to see if my neck is the culprit. My doc said that if my nerves are pinched, this could be the cause of my problems, including my bowel problems.

Other than that, I will be periodically tested for changing ANA levels.
Posted 7/14/2015 12:44 AM (GMT 0)
Go to a different rheumatologist for lupus testing. Lupus is diagnosed with a list of 11 indicators. To have lupus you need to meet at least 4 of the 11. ANA is one of the 11.
If your doctor is just going by ANA then you need to run as fast as you can from him. He's a Quack or a terrible doctor. Untreated lupus can cause terrible problems down the road.
Posted 7/14/2015 12:56 AM (GMT 0)
The Rheumatologist who called me a drug seeker and told me it's all in my head (without even looking at me) is certainly a quack.

This new family doctor is going to help me figure this out. It's going to take some. It's like start getting over from scratch.
Posted 7/14/2015 1:27 AM (GMT 0)
Are you saying your new doctor only looked at the ANA for a lupus diagnosis? The ANA can fluctuate and you can have a positive ANA and be perfectly healthy, too. Couchtater is dealing with lupus and Fibro so she gives really good advice on the topic.

I do hope you get to the bottom of this and find out what really is going on. It could be several things at once so I hope whoever you see is thorough. Many of us have been through all of this too so you are not alone.

www.lupus.org/answers/entry/lupus-tests

Sherrine
Posted 7/14/2015 3:53 AM (GMT 0)
The new doc sent me to a rheumatologist immediately. I only went to the new doc bc my old one was on vacation. He looked at me and my symptoms and determined NOTHING had been done other than a scope and an MRI. He ordered a bunch of bloods and diagnosed me with seronegative arthritis and wanted the rheumatologist to do more testing for Lupus or other conditions. I have inflammation in my blood but they can't tell why. That rheumatologist is the one who blew me off. But in the meantime, the new family doc went through the MRI report and found some issues that he wants to have checked out further - the cervical spine stuff.

I already have a diagnosis of trigeminal neuralgia, histamine intolerance, and transverse something or other, I can't remember the name. I have dry eye syndrome. But nothing has been done to figure out why. I have nerve problems and have lost a bunch of weight (some is pregnancy weight as I'm 13 months pp) but I'm way under my prepregnancy weight. With the abdominal pain, my old doc thought Crohns. I have pupura on my lower lip that has been there for years. The list just really keeps going. I have joint pain but it comes and goes and isn't chronic.

This has been going on for years. At least ten. Random symptoms keep piling up and I think I've finally found a family doc who will help me piece it all together. I will try and find another Rheumatologist to actually look further.
Posted 7/14/2015 3:59 AM (GMT 0)
The Rheumatologist I was sent to actually told me that she was going to contact my Neurologist and recommend that he take away my Trigeminal Neuralgia diagnosis! I'm not sure why, I don't have meds for it.......

She told me that the numb skin on my foot/ankle that I could cut and not feel a thing is normal. She also said that my hair loss and heat sensitivity is normal. Also the photosensitivity is normal.

I'm no doctor but none of that is normal to me.
Posted 7/14/2015 4:02 AM (GMT 0)
But yes, to answer the question, the rheumatologist only looked at the ANA. I'm sorry, I vented there.
Posted 7/14/2015 4:19 AM (GMT 0)
So overall, I think that I have a few things going on. But as for the abdominal pain (appendicitis type pain that comes and goes and always hurts when palpated) and the numb skin and nerve symptoms, it may be caused by the neck findings.

BUT, I've never had a neck injury. I've had tension in my neck for long periods of time but haven't felt it in years. So then I gotta ask, why do I have degeneration in my cervical spine at 31? And why didn't my old family doc notice that on the MRI?! He specifically asked if I've had a neck trauma. Bc my MRI shows that I've had one.........it's a little alarming to me.
Posted 7/14/2015 6:18 AM (GMT 0)
Manda, I have high inflammation in my blood but I also have several inflammatory illnesses causing it. And I also have Fibro which isn't and inflammatory illness. In my case, Fibro is causing some of my pain and other things are causing the pain to be more intense.

My daughter had intense abdominal pain and weight loss...was only 97 pounds as a 5'7" adult. She did have some vomiting too that came and went. The doctors couldn't figure it out and one doctor (a gastroenterologist) even told her it was all in her head! She didn't know what to do so I said that she has seen every doctor but the gynecologist so she made an appointment. It turned out she has endometriosis and that was causing her severe abdominal pain that came and went.

Several years passed and she started getting the appendix type pain, was checked and her appendix was fine, her gall bladder was fine, and by golly if it wasn't a flair up of her endometriosis again! She was put on medication and is doing fine again...no pain.

Also, when I was pregnant I had an ovarian cyst that no one knew about and that gave me severe pain that came and went. They ended up doing exploratory surgery on me when I was five months pregnant and discovered it. It was ten inches in diameter and weighed four pounds and was twisting on it's axis and the twisting caused the pain.

So here are two gynecological problems that can cause the severe abdominal pain so maybe you might want to check in with your gynecologist. It's really difficult and frightening when doctors can't find anything wrong with you when you are having severe pain. But our bodies are telling us something is wrong and don't let anyone tell you it's all in your head! Be persistent and you will get this figured out...and hopefully soon.

Sherrine
Posted 7/14/2015 4:13 PM (GMT 0)
Wow, that cyst was an inane size!

When the appendicitis type pain first started, I went to the ER. I really thought it was my appendix. I had an ultrasound and they could see fluid in that area. I had a CT scan and all looked well. So they determined that it was a ruptured cyst and sent me on my way. But here I am, a few years later, and I still have the pain.

Being in Canada, I'm stuck with riding out the path that the doctors determine. I am at the mercy of the doctors to refer me to specialists.

I had a CT a few months ago and it was normal. Wouldn't a cyst show up?
Posted 7/14/2015 4:15 PM (GMT 0)
And this^^^^ is exactly why that Rheumatologist told me it's Fibromyalgia. And it very well could be. But that doesn't explain everything.
Posted 7/15/2015 2:56 AM (GMT 0)
Its sometimes very difficult to find our answers, and many have more than 1 issue.

All we can do is one day at a time..

At times we do not always get answers...i had an injury that did not show up on tests, so was never properly treated for decades...

When my therapist found it and corrected it..i told him.. I had to wait for you to be born, grow up to be a physical therapist and fix it..

Good things come to those who wait : )
Posted 7/15/2015 4:28 AM (GMT 0)
Lupus does all sorts of insane things to your body. Ask your primary to put you on plaquinel and predisone to see if it's autoimmune. If you get better then it's autoimmune.

I take plaquinel and Leflunomide for my autoimmune diseases.
Posted 7/15/2015 9:16 PM (GMT 0)
The cyst I had when pregnant happened back in 1973 and I'm not sure if they had CT scans back then. I know they did a kidney scan and took x-rays and didn't see anything so they did the exploratory surgery. I was five months pregnant at the time. It's a good thing they did because the twisting was cutting off blood supply to the ovary and it was turning gangrene and ready to rupture. They had to remove the cyst, ovary and Fallopian tube. They thought my baby had died during the surgery because they couldn't hear a heartbeat anymore. This went on for several days but God had other plans. I had a beautiful, perfect daughter four months later. :-)

Could you ask for an referral to see a gynecologist? Some women get frequent cysts so maybe that's what is going on. I'm just guessing here but endometriosis could be ruled out at the same time. At least you would be eliminating a couple of things. It's tough when you are at the mercy of a medical plan.

Sherrine
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