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Multiple Sclerosis Message Board


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I have a high positive ANA 1:640, have had positive for 11 years of checking it. I also was diagnosed with lupus in 2000, but my PCP said it was fibromyalgia. I had a dx of CFS. I now have high RNP levels, which lower when I take antimalarials, but I do not have inflammatory markers (ESR, RF factor). I am deficiant with Vit D & B12, I have muscle weakness, muscle pain, prolonged severe fatigue since 1997, lip ulcerations, mouth sores, exercise intolerance (I get chest tightness, forceful rapid pulse, and shortness of breath). I only get joint pain through walking/exercising. I have no rash, no joint swelling, no edema, do not have symptoms of scleroderma. I have bladder/esophageal/stomach inflammation. No kidney disease, but I have bladder disease. I also get muscle spasms, twitching. Nerve related I guess burning, cooling sensations, pins and needles shooting pains, headaches. The pain variates in my back from sharp on my lower thoracic to feeling like someone kicked me in my lumbar area, to dull throbbing pain in my upper thoracic, to whiplash feelings in my neck. The severity of my pain is all in my back & neck and my legs ache alot.

I honestly have no idea what I am overlapping with MCTD but I have the serological markers for it and I respond to medication for it for so long. I know I have it. I have been nonfunctional with my life since 1997. That to me is the tell all. I'm not getting better, this is not going away. I've always known it was more serious than just fibromyalgia. But a doctor that doesn't believe me I guess, my own family doesn't believe it, they think because I have had the FMS diagnosis, it's all been in my head. I'm starting to believe my PCP feels the same way and he just keeps calling it FMS as his way of being nice about it. I haven't worked, my biggest accomplishment in life was working in a grocery store. My son was telling me yesterday how stupid I was because of that. I guess I didn't get a full understanding until yesterday at what a failure he really thinks I am. And my daughter, she says I am a lazy peice of crap, all I want to do is lay around in bed, that my life is worthless. Does that sound like an autoimmune disease to you? It does to me.. I've seen what these people go through, and I saw myself.

I didn't know that multiple sclerosis was an AI disease too. Back in 2005, I went to this neurologist over tingling & myofacial pain. He put me on neurontin, it eventually subsided. I have since been sent to another neurologist over migraine headaches. He thinks because of that, and my symptoms I have now, that I have MS, yes he clearly told me he thought that. I did have a brain MRI back when I used to go to him, and it was fine. That is why he wanted to do a spinal tap. I guess unless my rhematologist thinks I need it, he will not do a spinal tap if I get the MCTD diagnosis through her. And I would be more than compliant at doing a spinal tap just as long as they MRI my back first to make sure it's not causing the nerve problems. I just don't see any reason for a painful procedure like that and it may not be necessary. Let's look at the obvious first, huh..

I don't think I've hit the right doctor here for treatment of spinal problems, but I'm hoping he can help with that. I do not feel like my PCP wants to deal with it at all unless it's to just toss me back in PT. And I want a doctor I can rely on to help me.
I have had high ANA's for 11 years of 14 I've been sick. I was not tested on the 3 years previous to that. And I have had multiple problems with the majority being severe prolonged fatigue & pain. And now nerve problems, muscle weekness, and widespread back pain that won't let up.

That false positive stuff is crap. Maybe possible if your titer is low. But when you keep getting back repeated tests showing it's high, and the same thing over and over, and the same results at different labs, bologna.

Yes I've heard that in the past, that the hospital I was tested at could produce false positive results on occassion. Stupid I sware. I have been tested out of state and several labs. All the same thing.

I know autoimmune diseases are hard to diagnose, but doctors make it hard on us, by ignoring our symptoms. Not all of us are clear cut to the criteria but when things are so awful, you don't feel like you can function, they need to open their eyes up.

My mom is 65 years old. She is eat up with osteoarthritis. They thought they was going to have to do knee surgery on both her knees. She got by with just getting one operated on. She has been tested a few times and has never had a positive ANA and if anyone would meet the criteria for that, it would be her. She's tired all the time, her joints in her fingers disfigure.

I do not have joint pain unless I walk. I do not believe I have arthritis issues (except in my back), but I have muscle pain. I have a hard time believing I have MCTD. But my daughter has symptoms of raynaud's and her joints swell. Her doctor thinks she got an AI disease from me.

It's just not all clear and cut. But I know I have been bad sick for along time and this is not going away. And I am so tired of people treating me like I have nothing wrong with me.

My RNP levels narrow it down. I already know without questionable doubt my immune system is overactive. From which disease though, IDK. It's most likely either MCTD or MS. There are not alot of autoimmune diseases related to high RNP levels. It shouldn't be too hard to figure this out.

I did have a brain MRI at the onset of the first time I had tingling sensations. But I had been feeling bad for 8 years prior to that, without any nerve symptoms. Maybe it isn't MS.





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