Hello
I've been reading here for a while, and decided to register and join in.
I'm an almost 40 mother of two, married to a Marine stationed on Okinawa, Japan, from SC. I'm also "mom" to seven dogs (long story, we came here with none) and, tending to them is about all my creaky, bent body can take anymore.
The symtoms that have me and my GP perplexed are...
Aching joints, back, neck, and ribs. Extreme fatigue. Morning stiffness . General mild neuropathy. Some range of motion loss. Edema. Sensitivity to heat and cold, especially with humidity. Night sweats, yet negligable to no fever. Gastrointestinal irritability.
Testing has shown...
Normal ANA, ESR only 2 points high. Dangerously high triglycerides (strange because my diet would suggest otherwise). MRI of cervical spine only, showed small degree of reverse curvature. CT Scan of Chest turned up gallstones, 2mm node in upper right lung, and atrophy of right kidney's upper cortex. Neurology exam normal, except for cubital tunnel damage.
Meds to date...
Mobic, Zocor, Effexor (previously Dx generalized anxiety disorder).
Having no Dx, I posted in RA because it is the busiest, and, because my sister has RA, and therefore, it's a frontrunner for Dx. My GP says the symptoms cry autoimmume or connective tissue, but, so far, testing doesn't confirm anything.
So, that's the nutshell version. I'm happy to "meet" you all, and hope to get to know you better. I'm glad I found this website.
-Amy
Hi Amy and welcome! The thing that I want to say is that although all of my labs are negative damage was starting in my joints. Have you seen a Rheumatologist yet? I highly recommend it since labs don't always tell the story.
I hope you find out soon what is going on so that you can begin treatment.
Hello Amy,
You can have RA and test serum negative, no antibodies show up. A certain percentage of people with RA have this condition. Now, that I've said that has your doctor checked your B-12 levels? I know most would never think to do this, but the symptoms your having especially if your also having memory, cognitive problems could signal a B-12 defiencency. If your body has stopped absorbing B-12 it can cause all your symptoms. Please check into it. I was B-12 deficient for nearly 2 years before they finally checked me, and by then it had left permanent damage. Now I take shots. I'm not old either this happened at age 32. The doctor said it was common in the elderly.
{ It does cause neuropathy }
Also, I'm assuming your doc has checked your thyroid?
Good luck with the dogs. I myself have 5. And a ten year old daughter.
Welcome to the message board! Let us know how your doing.
Ginni
I agree that you need to see a Rheumatologist or an Immune Specialist. I also would get a second Neurologist to examine you. Was it a rheumatoid node in your lung or something else?
Some people are just naturally prepositioned to high cholestrol which will give you gallbladder stones. It will probably take medications to bring that under control. Is your doctor treating the stones with some kind of medication or will they have to do surgery? My daughter had her gallbladder removed this year at the age of 25. Your GP needs to do something about that.
You does sound like you have Mixed Connective Tissue Disease which means you have an overlap of symptoms from several autoimmune diseases. It also means it is important to get you on some medications. In particular, have kidney damage is an indicator of Lupus. The Rheumy is the best for this, but make sure they recognize all your symptoms not just your bloodwork.
The GI stuff could be Irritiable Bowel and often comes with autoimmune stuff including RA and FM. But considering your other symptoms, you should ask about having a colonoscopy to rule out other problems. If it is just IBS, that's controlled mostly by diet but it sounds like you are already pretty confident that you are eating healthy. If it is very severe, it might be something like Chrohn's. Again, that is treated by biologics and other RA meds.
You must get to a good Rheumy. This is probably going to be a piece by piece solution. But I think you can get a lot better if you can just find the right treatments.
And welcome.
have you had your thyroid (TSH, free t3, free t4, antibodies) checked? many of your symtoms can indicate hypothyroidism
I have Juvenile Rheumatoid Arthritis along with Celiac so I always suggest this to anyone with overlapping autoimmune symtoms - http://www.celiaccentral.org/Do_I_Have_Celiac_/13/
Celiac Disease is a common AI disease that's drastically underdiagnosed. In the US 1 in 100 have it, yet a stunning 97% remain undiagnosed or misdiagnosed.
Definately see a Rheumatologist. Good luck, I hope you find some answers soon!
Just another idea to add to those above (your doc is going to love us!) Have you had a CCP blood test (not CRP). My internist says if positive, it is diagnostic of RA, evn if other tests were negative.
Keep us posted - I am sure many others are in a similar situation and can benefit from your journey to diagnosis and treatment. All the best, Pat
Good idea Felines4ever, my CCP was raised (my doc did this test very early because I had cancer before and its an indicator) which made everyone thing cancer because my RA factor was only mildy raised.
After all the tests for cancer he revisited RA and sent me to a Rheumatologist who made the final diagnosis. By this time all the tests were positive anyway.
So yes, your doc is going to love us, you need a Rheumy, and B12, thryroid, and CCP
There are many auto immune diseases that attack your connective tissues. If not RA you may have the early sings of one called Scleroderma. I cut and pasted the symptoms below:
§ Numbness, pain or color changes in your fingers, toes, cheeks, nose and ears, often brought on by cold or emotional distress (Raynaud's phenomenon)
§ Stiffness or pain in your joints and curling of your fingers
§ Digestive problems ranging from poor absorption of nutrients to delayed movement of food due to impaired muscular activity in your intestine
§ Sores over joints, such as your elbows and knuckles Puffy hands and feet, particularly in the morning
Good luck.
K-Lynn
I hope that all these people have not scared you because the rheumatologist will be the one to diagnose you and your physician will more than likely refer you to one. Sometimes it takes some trial and error and a lot of labs before you get the official diagnosis. Hang in there. Hoping better days are ahead.Thank you all for the responses. I am adding several things mentioned by you all to a list I'm carrying to my GP tomorrow. I've grown impatient with the lack of progress and I'm going to insist that I call the shots for a change, and see if we can learn anything. Time undiagnosed is time untreated, and that affects my body, not hers.
Let's see...B12 was checked by neurologist, and thyroid was checked by GP...both normal. The CCP isn't familiar, so I'm adding it to my list.
IBS is very likely...Colonoscopy, Upper and Lower GI, and stool samples ruled out everything else a few years ago.
I also have endometriosis. Lapro four years ago to remove 9cm hemorrhagic cyst on left ovary and scrape endo tissue which had fused to my colon.
Speaking of cyst...I do have a cyst or nodule under my skin, on my left elbow that came up about the same time the joint pain and fatigue jumped into gear.
Rheumatologist is at the top of my request list for tomorrw, and she is already going to refer me to a Urologist to check on the kidney.
I am on Zocor for the triglycerides.
Thank you all again. I am very glad I decided to join the forum...this is very helpful.
BTW, I'm in Okinawa, Japan as I said, so if I seem to take longer than others to respond, it's because I'm asleep when most of you are on here.
Greatfully,
Amy
Aw, don't worry about the reply time. We have the Aussies and the Brits that give us round the clock coverage. Some of us can't sleep at night and you'll find us on the board.
On the Endometriosis, you might want to check that out again as the scar tissue continues to grow. I had that really bad and it really pulled my general health down and that was a long time before RA. They have treatments to keep the scar tissue from growing and that might help. I felt that the Endo had a direct bearing on the IBS symptoms which greatly improved after I had a hysterectomy. So, while it is not related to RA, it could be something to look at. Endo runs through my family big time and it is not a friendly disease.
Just wanted to welcome you to this place. Everyone's mentioned the things that popped into my mind when I read your post.
Please let us know how you fare with your rheumatologist... hopefully it won't take too long to get an appointment.
This is actually funny...here I was all geared up to waltz into my GP's office, and inform her that I needed a little latitude after more than a year of "non-diagnosis" and that I had a list of requests (polite demands
Then, ever so abruptly, it finally hits me...Monday morning here is Sunday night back home....my doctor's office was closed on a weekday for none other than...The Super Bowl
[QUOTE=RustyHinges]
Speaking of cyst...I do have a cyst or nodule under my skin, on my left elbow that came up about the same time the joint pain and fatigue jumped into gear.
[/QUOTE] ==== rheumatiod nodule. Very common with RA.
WOW Japan!! I hope you can get some answers soon.
God bless.
l am also a military wife and had endometriosis. Had a total hysterctomy 5 yrs ago. I also have ibs and probs from scar tissue on bowel. I have a nod. on l elbow also from ra. You can get nodules from endo too in the lungs. it is rare though. My husband is a med. provider in the usaf and is the one who ran test for ra. The rumy diag. me after going to tons of drs with no help. Do you even have a rumy there that you can go to. When we were in Alaska there was only one downtown that took tri care. Most people had to fly to Seattle. I hope you can get to a rumy soon. Insist on it. Take care and welcome.