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Four years ago, I had whooping cough. Since then, I've been tired, started having scleroderma symptoms, and my neck started getting weak. I knew It was bad when I couldn't raise my head to look up, March 2008. With the help of a physical therapist, I finally got a referral to a neurologist in March 2009. He ran a broad spectrum of blood tests. They came back positive for two things. First I had a positive ANA Scl-70. And the second thing was the positive DNA test for genetic markers for muscular dystrophy. I have a fourth gene, second allele, ten irregular pairs — which puts me into the category to have “fascio (face) scapulo (shoulder blade) humeral (upper arm) muscular dystrophy. He says it is adult-on set, so I can count it as having started many years ago, he thinks I've probably had symptoms for many years, but I can't identify any — until a year an a half ago. The neurologist told me that I shouldn't “bother with physical therapy, it won't do you any good,” and “there is no medication for what you have.” I can't tell you what kind of an emotional impact this had on me at the time. The scleroderma I had suspected for years, but it still freaked me out completely, and the FSH MD, well that was mind-boggling, too.
However, with regard to the muscular dystrophy, I recently saw a Dr. at our university medical center. Upon entering the exam room, he asked me how long I had had FSH muscular dystrophy. He said he had another patient with adult on-set muscular dystrophy. He told me it lies dormant in 30% of the people who have the DNA marker. I told it this was so in my family. The Dr. was a rheumatologist, so muscular dystrophy is not his field, never-the-less, he told me he thought that the muscular dystrophy had become active as a result of the whooping cough. He also is of the opinion that as the AP has its effect on my scleroedema, that it will also reverse the symptoms of the FSH MD. He made this statement based on his experience with his other patient who is also using AP and has recovered some of his muscles, and another patient who lost use of his neck and recovered.
Now, I would normally be very skeptical. Since January, I have been going to physical therapy with an outstanding young woman who has a Phd in her field. She has worked tirelessly with me, and has assisted my in restoring a great deal of my strength and mobility, however, I had some obstacles I couldn't seem to over come. Since I started AP three weeks ago, my right arm, which has been weaker than my left, has suddenly become dominant and is putting on muscle. My shoulder blade muscles which were not working, have started working and are now holding my scapula flat against my back instead of “winging.”
One of the symptoms of scleroedema is a lump of tissue at the top of the spine/bottom of the neck. That is shrinking. I have wondered if it is in part responsible for the inability of me to raise my neck. This has not yet resolved, but I'm hopeful, and aware of new “soreness” in the trapezius muscle from exercises that I've been doing for months – so they may be “waking up” from dormancy.
There is so much doctors just don't know. That is the amazing thing about this bulletin board. We can share experiences. We tell each other what we've learned, and what has worked and what doesn't. I don't know if the FSH will resolve, but it is an interesting aspect to this whole thing. Time will tell. For more on the determination of people like us, I'd like to draw your attention to an article in the Sunday, August 9, 2009 Sacramento Bee about a woman with Lyme Disease who has done AP and just climbed Half-Dome in Yosemite for the second time! Google Sacramento Bee Lyme Disease, and it'll pop up.
Margaret, thanks for sharing so much of your story. You've made some amazing connections as you've worked your way through “the system” and my thoughts go out to you as you move forward with AP! It makes perfect sense to me that an acute infection could switch on a genetic marker of some type….heck, I've lived through that one myself, as have many here. 😉
Thank you also for sharing the great Sacramento Bee article….for anyone wondering whether they might still have Lyme after testing negative for it, this lady's story really tells it all:
http://www.sacbee.com/livinghere/story/2089239.html
Peace, Maz
[user=1323]Margaret Mueller[/user] wrote:
Maz, what happened? has it resolved, or is it still active? This is so interesting…
Hi Margaret,
Well, in my case Lyme disease activated seropositive RA. There was no doubt in my mind that Lyme was the one bad apple to tip the proverbial apple cart, as within 2 months of my Lyme rashes (and delayed treatment due to poor Lyme tests), I was holed up in bed and unable to move anything, including my jaw. Prior to this diagnosis, I had all the classic early and second stage symptoms of Lyme…stiff neck, migrating arthralgias,/myalgias, swollen glands, flu-like symptoms, etc. I do think I was probably infected about 10 years ago due to some strange neuro symptoms I had in the intevening years, but a second tick bite in addition to the swift passing of my mother from breast cancer in the same time frame and, no doubt, a genetic proclivity of some sort, probably set the scene for a whopping dose of swift onset, very severe RA.
I think that the condition of my immune system was probably not as good as I thought it was when I got infected 3 years ago now despite eating a very balanced, healthy diet and working out with a boot camp trainer. A lifetime of heavy vaccinations, living abroad in developing countries and exposure to some pretty unusual infections, later exposure to childhood illnesses I never got as a child (Strep, Fifth's, Chicken Pox, recurrent UTIs, etc) and probably a stress-filled childhood due to much moving around. So, all this, and an already compromised immune system…add Lyme to the mix…and everything went BANG, so to speak.
Lyme is one of those persistent, difficult to treat infections and, unfortunately, once one has it, it is extremely difficult to eradicate. My hope is to get it pushed back to a place where my immune system can take over and keep it in check. So far, so good! It's taken three years, but currently, all I have to remind me of this nightmare now is one very persistent Lyme knee!
I think the thing is that for most people it's not just one infection…one infection may be the triggering bad apple, but it's usually a whole pathogen load that has been collected throughout our lifetimes. One Lyme doc in NYC put it this way….we collect pathogens our whole life through and these remain with us for life (much like chicken pox that will remain in the body an appear as shingles later or strep that may reappear as rheumatic fever). The immune system is normally very effective at keeping these in check…until one acute infection comes along to open the floodgates.
It's 1.30am here in CT, so I better hit the sack! I hope this makes sense? Night, Margaret….nice chatting with you. 🙂
Peace, Maz
Hey Margaret,
Your story sounds so much like mine too. I went from being super healthy and active to over a period of a few months being a patient in many different doctors' offices, and all offering different opinions and willing to treat specific symptoms. It was me who finally realized I had Scleroderma and then had it confirmed. It was later that I insisted on being tested for Lyme and that too was confirmed. Now we know that the Lyme caused all of these problems.
In the beginning I could hardly move my neck and because I had been in a car accident years earlier which required a cervical fusion, thought it was a result of that. In that same accident, my jaw was dislocated so I thought my jaw pain was a TMJ flair. I could hardly roll over in bed from spine pain (that was new) and could barely lift a shirt over my head (that was also new). I played competitive tennis for years and always had one knee that was worn out (had replacement surgery) so that knee would swell, but suddenly both knees were the size of cantaloupes (that was new). Later I learned all of these symptoms scream…….LYME.
In addition to abx, frequent use of my infrared sauna and enzymes (I use Neprinol), have helped tremendously. I no longer feel like I'm 90, and am back to a very active life. Still have aches and pains, but it's mostly from waking up muscles that have been in storage. 😉
Hang in there, Margaret, you're on the right track.
kim
I no longer feel like I'm 90, and am back to a very active life.
……….and you look a million dollars too! Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Maz,
You've given me food for thought. My dad was Air Force. I lived all over the country and four years overseas. I had the usual childhood diseases before there were vaccines — measles, mumps (with encyphelitis), rubella, pneumonia (they were smokers). But you're making me realize there is probably more to what I've been exposed to over the years. Because my mom's family had heart disease, I've always taken very good care of myself — low or no saturated fats, low salt, high in fresh fruits and veggies, aerobic and weight-bearing exercise. So I know what to do. The hard part has been finding the docs to do the tests, and then what to do about it.
Two of my three boys have been bitten by ticks, but neither shows any sign of problems — that I'm aware of. I'll have to learn more.
Thanks so much.
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