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Autoimmune Disorder - Polymyositis? Not Multiple Sclerosis

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I have every symptom of Polymyositis. Been seeking a MS DX for years but think I've been barking up the wrong tree. My info: 28, 135 lbs, positive ANA, positive (high) HSV 1 Type Spec IgG, Immunoglobulin high (143, should be no higher than 100.) Finally getting somewhere after all these years and my allergist saw my reacting and breaking out in spots where they didn't scratch me and he went Hmm...seems indicative of an autoimmune disorder and asked me if I had been tested before. I said no so he ordered all this testing, a + ANA comes back along with everything else I listed and he blows it off as false positive. No. Not when 48+ symptoms are present, then it becomes accurate, conclusive and viable. If I had no symptoms I could believe in a false positive. My mom was researching, putting all this together and she texted me (she was out of state) and said omg call me. I know what you have. She said you have Polymyositis. I mentioned it to my FP/GP doctor and she believes that could be possible but says a muscle biopsy would confirm and she'd call in a surgeon because that's who does a muscle biopsy. I thought a neuro, but whatever! I don't care who does it. Just have the license to back it up, the skill, and get me a DX! So I see a Rheumatologist this Friday and hopefully she can give me answers and won't blow off this +ANA, etc. It's very similar to MS which is why I probably got confused and spent 4 years pursuing that and trying to help lead the guide the doctors in that direction which probably cost me precious time. So I don't care what the allergist says. It's significant when you have symptoms along with a +ANA. He tells me "your immune system is working great..everything I checked was fine, it looks perfect." LOL really? Is he serious? My immune system is FINE with a +ANA, abnormal Immunoglobulins and a elevated HSV Type 1? So if I'm "fine", why is he sending me to a Rheumatologist? I'm glad..don't get me wrong but since I'm fine *eye roll* why are you sending me to an autoimmune specialist? He had the labs in front of him and didn't even know my ANA was positive! Had to tell him, then he saw. Does anyone have Polymyositis or know anyone that does? Any help, feedback etc would be appreciated! I'm 28 and tired of feeling like shiznit! My body reacts to everything - antibiotics, foods, meds, vitamins, etc. The ONLY thing that doesn't cause me a problem is Ibuprofen. My mother made a good point that probably because it's an anti-inflammatory medication and an autoimmune disorder is inflammation, affecting your whole immune system, not only does it not hurt me, but it actually helps. I think she's right. Would love feedback. Thanks!
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First Helper User Profile Gary84
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replied December 29th, 2012
What doctors wont tell you about polymyositis/dermatomyositis
Hello,

I am 32 years old and a survivor of polymyositis. I was diagnosed in 1998. Based on what you are describing, i can tell you that if you are still seeking diagnosis after 4 + years, it's likely not poly- or dermata- myositis. I say this because symptoms of both of these diseases are very acute and would have already led to complete muscle loss, like to the extreme exampled in Stephen Hawking. Or you would be dead.

That being said, i can also tell you that you are likely on the right track in investigating autoimmune. These are a vast array of diseases all with one cause, lowered immune function. This lowered immune function is caused by years of toxic buildup. If you want to solve your health problem, i suggest consulting with a Naturopathist (N.D) or a holistic nutritionist who can help you adjust your diet to eliminate the offensive food imposters such as high fructose corn syrup, soy, xanthum gum, and formaldehyde that are making you sick. I myself struggled with practically zero muscle for nearly 10 years before finally discovering the truth with the help of a holistic nutritionist. It's more than four years later now and its still rough because my muscles had mostly atrophied, but at least I can walk up stairs again and not freak people out by falling without being able to get back up.

I hope this helps, God be with you!
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replied January 2nd, 2013
Thanks! I was actually diagnosed with Sjgren's Syndrome two days before Thanksgiving. The other 50% is still unknown. I know it's not RA or SLE but my Rheumatologist agrees that all my symptoms are not from Sjgren's alone. She agrees something else is going on but started me on Plaquenil and said we'll see what symptoms are left over and go from there. Thanks for your reply!
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replied January 3rd, 2013
I'm glad to hear you are getting some answers you feel can lead you in the right direction to feeling better. It sounds however like you were already correct about the auto -immune.

I can tell you that in my experience, all auto-immune diseases are essentially the same and are the result of long standing toxicity in the body that has brought about a severly weakened immune health. The only way to correct the problem is to clear the toxic build-up and replenish vitamin/mineral deficiencies which are the cause to the problem.

Check out these resources:
"Healing the Gerson Way" Charlotte Gerson with Beta Bishop -- AND -- "Putting It All Together, The New Orthomolecular Nutrition" Abbram Hoffer M.D, PhD
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replied September 10th, 2013
Dermatomyositis/Polymyositis
I was diagnosed with Dermatomyositis at 12 years of age in 1967 and was told I would not live past 30 years of age. Now I am 58 years old had have been doing some reading since I have been very tired with a lot of calf muscle soreness the last year. From what I have read I had Polymyositis since I never had the red rashes on my upper body and swelled eyelids but I was also on very high doses of prednisone which now I can't take because it caused my diabetes. Learning how to walk again with the pain at 12 years old was very tough. My problem was in the calves of my legs with many red nodules which sometimes appeared on the bottom of my feet. Yes I did have some facial red rash at age 13 but my Doctor felt it was due to the high doses of aspirin I was on. Once changed it went away.
Since I have not had many problems for the last 15 years I have not thought about it.
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replied October 24th, 2017
My wife has been sick with Lyme disease, severe CFS, MS, RA with Lyme disease, Lupus, Polymyesitis, stage 3 cancer for past few years which has been completely changed our lives. We have gone through every route of allopathic treatments but it only has worsen her health status which we were advised to look into modern or natural route of healing. She was dealing constant seizures, unbearable migraine, high cytokines, constant body pain, a lot of hormone imbalance, completely bed bounded for years but our wonderful practitioner introduced us IMMUNO-MAF (injection, spray), GcMAF and peptide bioregulator products. She has improved so much with right diet, drainage, and mindset work. She is out of wheelchair and moving around on her own and going for short walks with significantly less neurological and body pain issues. You should definitely consider IMMUNO-MAF (not on their website. you need to reach out to them in messages), gcmaf products. It has been amazing for all of us including our sick daughter. Stay strong!
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