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MS Hug ... How long does it last?

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    #16
    I hadn't checked the boards for a few days, but it was very nice to come back to so many replies. The Hug is still going stong. Not AS BAD as it started out though. Maybe I'm just getting used to it? And all the ladies, yes ... it does feel like my bra is way too tight. I've been wearing tank tops under my shirts instead lately, it helps a little. It was 3 weeks today. I hope it starts getting better ASAP!
    DX'd 10-7-05

    "We may be ill, but we are not weak!" - Montel Williams

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      #17
      Shortness of breath for 10 months

      I have had excessive tiredness, slowly progressing into a general malaise for 15 months. I have had chronic persistent shortness of breath for 10 months. Mid-summer, I was having such a hard time filling my lungs for 2 days I ended up in the ER. That kicked off my odyssey. Allergist, ENT, pulmonologist, cardiologist, and now neurologist. He ordered a brain MRI "just to rule out MS", saying "I'd be really surprised if you had MS. Your symptoms don't fit." Well, we were both very surprised to see so many MS lesions the radiologist said they were "too numerous to count." None of them were "active", implying that I've had this for awhile, with no symptoms but fatigue and shortness of breath. They're going to MRI my neck in a couple days to see if there are lesions on my spinal nerves. It sounds like there aren't many people with long term MS Hug, but then I don't fit the typical profile already!

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        #18
        I've had it off and on over the past five years. I'm in a flare right now evidently and woke up with it this morning. I'm in extreme pain. I'm hoping it goes away soon, as it's very hard to get anything done when just trying to breathe is painful.

        I hope we both get some relief soon.

        Big hugs!

        Lisa
        Joy is not the absence of suffering. It is the presence of God.
        Cut aspartame from my diet in 2012 and my symptoms have slowly disappeared. Interesting!
        Alpha Lipoic Acid (200 mg) + Acetyl L-carnitine (1,000 mg) = No more fatigue for me!

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          #19
          2 years and counting. Just started neurontin. It's helping. Still need to get the dose adjusted.

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            #20
            Chronic shortness of breath

            Now, it looks like I probably don't have MS. While I have a bunch of lesions, they're not inflamed. My c-spine MRI is clear! YAY! My lumbar puncture showed no MS markers. My shortness of breath feels a lot more like the "air hunger" described as a symptom of Babesiosis (tick borne parasite) rather than the MS Hug. I've developed new symptoms not consistent with MS, but consistent with late stage Lyme disease and Babesiosis. I've tested negative so far for Lyme, but I've heard that's not uncommon for people with Lyme. I'm looking for a Lyme Literate MD (LLMD) and more advanced testing. They say one of the most common misdiagnoses of Lyme is MS as Lyme does a good job of mimicing it.

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              #21
              I get half hugs too, on one side or across my back, but this only happens to me rarely, thank god. I can't imagine living with this daily.

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                #22
                sparky1, I've had the M.S. hug for many years now and I stress the many part, until they they can prove to me that it is something else, then it is what is..and yes, very very uncomfortable feeling to say the least, good luck to you and I hope it goes away for you very soon my friend..my M.S. is going on 21 years now and counting and no matter the difference in the symptoms each one of has to endure, we're all in this together as one big family

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                  #23
                  Finally! A diagnosis!

                  So after developing multiple new symptoms and going downhill quickly in late October and November, I did a blood draw for IGeneX lab to test me for Lyme and 4 possible co-infections. I ended up in the hospital for severe abdominal pain where I told them I didn't think it was MS (the neuro agreed), but that I thought I had Lyme and Babesia. None of the 3 docs agreed, citing a cerebral spinal fluid test I'd had for Lyme antibodies that was negative. They said it's a "highly accurate test", which meant I did NOT have Lyme. Well, my research has since shown that it's highly accurate only when it's positive. Studies have shown that only 13% to 30% of patients with late stage Lyme have any Lyme antibodies in their CSF, which means it's not a useful test if you've been sick over a year, which I have. Lyme is immunosuppresive, and after a year, many patients aren't making antibodies anymore, which makes testing difficult. Doctors mistakenly think that if your Lyme tests are negative, you can't have Lyme.

                  My hospitalist urged me to skip the LLMD appointment I'd made, bemoaned the money I'd spent on pending blood tests, and urged me to wait for a UCSF referral to their MS clinic. They were sure UCSF could figure out what I had, even though a dozen doctors over many months have failed. Good thing I didn't listen to them.

                  My blood test results came back and I'm positive for Bartonella and for Lyme. Although I have symptoms of Babesia, I've tested negative 3 times, so we're in a wait-and-see mode to see if the symptoms resolve with treatment. I have now started oral antibiotics, and in 2-3 months I'll switch to IV antibiotics. Hopefully by the end of next year, I'll feel well again!

                  Thanks for the encouragement here! This has been a great resource for me to learn about MS from other people living with it every day. My heart goes out to you and I wish you the best!

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                    #24
                    A couple things that have made me feel better that I thought I'd share:

                    I'd read on another MS post about magnesium easing the problem of struggling to take a deep breath. Magnesium definitely helped me. A bath in 1 c of epsom salts works even better than taking supplements.

                    (I've since learned that many Lyme patients are magnesium deficient because Lyme uses up the magnesium in the tissues and organs. Lots of people without Lyme are magnesium deficient, too, thanks to our typical American diet.)

                    One other thing that has really helped ease my fatigue is Provigil. My neuro was able to convince my insurance company to let me have it (it's really expensive), and it has been a Godsend for me.

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                      #25
                      Like others, mine comes and goes. This one has been going on for about 3 months. Nothing helps it so...I just deal with it. I just wish it would cause the effect of doing crunches to help me get closer to those perfect abs I have always wanted!
                      "I'm not sure what heaven will be like, but I know that when we die and it comes time for God to judge us,he will not ask,'How many good things have you done in your life?' rather he will ask,'How much love did you put into what you did?"—Mother Teresa

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