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View Full Version : New to the site, but not pain......insight appreciated :)



sassydivaTN
03-02-2009, 08:32 PM
Please allow me to introduce myself. I am soooo tired of being tired and hurting :(( If anyone has suggestions for me, PLEASE share. I feel so alone and this has been going on since 1996.

I am a 40 yr. old female, that has had symptoms since 1996. I've been tested for everything, and essentially all that remains is MS or lupus. I don't quite meet the criteria for either! My questions are as follows:

1. I have had an ANA as high as 1:1280, which comes and goes. I did get put on Plaquenil several years back and for the most part I feel good, but am having a huge flare right now......could the plaquenil be the cause of my ANA being negative the last few times I've had blood drawn??? Too bad it didn't take the symptoms with it :))) I just wondered about the bloodwork. BTW, up to 1/3 of MS patients also have positive ANA's (though I'm trying to find out if they could have one quite that high......from what I've seen so far, I've heard some say they had one as high as 1:640, but so far I have found NOONE who has said theirs has been that high with MS.......and I've tried looking it up in medical journals, too.........I'm desperate!

2. How can I know whether the pain I am experiencing in my elbows, knees, ankles, jaw, neck is truly joint pain vs. parasthesias? The pain is there at rest and movement, there is no redness or swelling (just a feeling of warmth, though not literally to the touch), and there is nothing in particular that helps with the pain. It is very random. How can I tell if this is true joint pain/arthralgias vs. parasthesias? Obviously depending on the answer, that might give me more of a clue as to what to pursue.

3. I tested positive for cardiolipids (IGM) ONCE, and that was while pregnant( it was 15). Was this just a fluke because I was pregnant, or does it add any additional insight to solving this awful puzzle?

4. I get a lot of headaches (back of head) with dizziness, and some muscular pain in my legs. Are any of these typical of lupus?? I know it is for MS.

Just trying to figure out what I am dealing with :((( Don't know if I will ever know, and honestly, don't know which is worse. I just want to get started on the right treatment :(( I am on plaquenil (have been for about 10 years) and that's it...........it works great except doesn't get me out of these flare-ups (and if it is MS that I have, then I definitely need to know because the meds are different for that).

Thanks for any insight!

Sassy

mountaindreamer
03-02-2009, 10:54 PM
hi sassy,

welcome to the forum, i am so sorry that you are in a bad flare. My ANA is also high at 1:1280. I have had a high ana since 1996, but was first diagnosed with fibromyalgia. Then just this past october, lupus was added.

Last fall, i was in a bad flare, and my dr. gave me a Medrol injection. It helped me feel better for about 3 months. Also, they use medrol as a diagnostic process. Evidently, lupus responds to the injection, where other diseases do not. You might want to check into this option. I really felt better.

I am sure others will be along with a lot more information. One of our moderators, Rob, has MS and can probably provide you with a lot of information.

Again, welcome and I hope you feel better soon,
phyllis

Saysusie
03-03-2009, 09:28 AM
It is not at all unusual for ANA to be high at one drawing and low at another. The ANA test is a screening test used for several autoimmune diseases and Lupus is one of those diseases that the test is used for. The ANA test merely determines whether auto-anitbodies to cell nuclei are present in a personís bloodstream. The presence of (or lack of) auto-antibodies alone do not confirm or reject a diagnosis of any auto-immune disease. However, for most people with Lupus (or other auto-immune diseases), a high ANA is usually present.
Also, almost everyone with Lupus also suffers from one or more overlapping diseases (several conditions that exist simultaneously). Sometimes it is difficult to ascertain if a certain set of symptoms is from Lupus or from one of the overlapping diseases. It is not uncommon for Lupus patients to also suffer from MS, Fibromyalgia, Raynaud's, Sjorgen's, Pulmonay Hypertension, Pericarditis, Nephritis, etc. (the list continues, but you get my drift).
Personally, I suffer from Lupus and Fibromyalgia (there are more, but these two are the ones I want to talk to you about). It is difficult for me to know if my joint and muscle pains are from my Lupus or my Fibro. I know that when the muscle & joint pain feels heated and there is no inflammation, that it must be my Fibro. However, it is hard to "feel" inflammation with Lupus, so the inflammation could be a result of either condition.

Also, Fibromyalgia has its own subset of overlapping conditions which include: debilitating fatigue, sleep disturbance, and joint stiffness. In addition, persons affected by the disorder frequently experience a range of other symptoms that involve the entire system of the body -including difficulty with swallowing, functional bowel and bladder abnormalities, difficulty breathing, widespread sensations of numbness and tingling, abnormal motor activity, cognitive dysfunction, and an increased prevalence of affective and anxiety-related symptoms.

Our other moderator, Rob, also suffers from Lupus and MS. Hopefully he will be along to give you some information about these two conditions existing simultaneously.

You are not losing your mind, all of your symptoms are very real. However, they may be the result of more than one condition occurring at the same time. Perhaps you can have a conversation with your doctor about the possibility of overlapping illnesses in order to determine exactly what they may be.

I wish you the very best
Peace and Blessings
Namaste
Saysusie

sassydivaTN
03-03-2009, 05:39 PM
As I posted on the 'symptoms' forum, I am overwhelmed by the people who have responded to my plea for help and information :)) This is SO incredibly helpful. I thank each and every one of you!

I didn't mention that I have had every MS test that there is to have. I had both spinal and brain MRIs years ago when this first started and the MRIs again 3 years ago (about 9-10 years into symptoms). I just wondered if those early tests might have been done too early into the process to pick up on MS (I know it doesn't always reveal itself in the tests early on). I do have an appointment with a MS specialist in SIX LONG WEEKS :((( I am going to ask for all of the tests to be repeated. I would like to hear Rob's take on this, since it sounds like he is really experienced with both MS and lupus :)) Also, I had my last set of MRIs on a state of the art '3T' MRI machine, Ron........don't know if that makes a bit of difference or not, but the docs sure thought it did :)) Thought I better share that tidbit as well.

THANK YOU ALL for caring enough about a newbie to take the time to help me sort through all of this!

Love, Sassy

rob
03-03-2009, 06:22 PM
Hello Sassy,

Welcome to our group. I'm Rob, and I was diagnosed with SLE five years ago. I was diagnosed with secondary progressive MS just about a year ago now. The symptoms that eventually led to my MS diagnosis are optic neuritis, weakness and tingling in my hand and foot on my right side. My right foot would drag. I reached a point where it was like somebody temporaraily flipped a switch and all support in the rt. leg was shut off. I'd fall, uncontrollably, and hard. I also was having terrible electric shock feeling pain in my arm and leg. There are also a bunch of odd, less frequent symptoms, but they are always changing, and I have a hard time knowing what disease is causing what symptom, and what is a possible combo of the two.

It's very confusing. The symptoms for both diseases can be very similar. My last ANA test the rheumo's office was it's usual high, but I can't remember what the exact numbers were. I wish I had some answers for you, many of your symptoms are similar to mine. I can usually tell if I'm having joint pain versus the neurologically induced pain. The nerve related pain is like it's deep in my bones. It's often times a burning sensation under my skin on the inside. I hope that makes sense. Other times it's like an ice pick being stabbed into me, and then sometimes it's not pain, but sensations like I just stepped in a puddle of cold water. I think my foot is wet, but it isn't.

I also experience serious cognitive dysfunction but I believe that to be an effect of Lupus. We call it "fog". You get lost, forget how to spell, have difficulty talking because you can't think of the words. I hope we can help you find an answer to all of your symptoms.

Rob