Hello everyone...I am struggling and looking here for some hope. I have had MS for 9 years and done very well with no significant relapses, had the optic neuritis, brain lesions and failed VER...diagnosed hands down in about 6 weeks. I have continued to work and go and do like always...that all started to change last year. Started with severe Raynauds...about 10-12 episodes a day, then by summer I was getting weaker and weaker by the day and thought it was the MS, then I thought I had pneumonia...actually did once I am sure, tested positive for mycoplasma. Anyway despite SOB, back pain, eye pain and incredible weakness I continued to try and work then I woke up on October 3rd and couldn't walk. Landed in Baton Rouge in the hospital for a month...initially they started treating me with Solumedrol 1,000mg per day for what they thought was a MS flare. Well 4 days later I still couldn't walk, feed or dress myself...etc...so finally they called in Rheumatology and all my muscle enzymes were up, low white and red count, elevated liver enzymes, bottomed out K+...I was a wreck. They started me on MTX 6 tablets a week and pred 40mg a day, I slowly improved and within 4 months I had weaned completely off the steroids and was just taking the MTX, I was starting to feel "normal", well about 6 weeks ago I took a job assignment out of town, one of those dire situations where they desperately needed my help...I went, worked 10-12 hours a day and then all of a sudden I could tell it was coming back, I already knew my CPK was slighlty elevated from regular labs but I felt okay at that time, this happened about 2 weeks later...like an idiot I ignored it and kept blaming the back ache and fatigue on other things...within 10 days I was barely able to walk again, went to the local ER and my CPK had doubled from the previous visit despite a Celestone injection. I had to have a friend fly up and drive me home. I can only walk or stand briefly and I cannot breathe. I never had a muscle biopsy and my rheumatologist wouldn't call me back when I contacted them from Oklahoma in this shape.
They told me in the hospital I had MCTD, now they are saying DM??? I don't know what to think all I know is I am so weak EVERYTHING is an effort and I live alone. I am trying to continue to work doing tele-med visits from home but even using the keyboard is exhausting. My neurologist has scheduled for me to have a muscle biopsy...should I??? Do any of you think I brought this on from working too hard?? I am in the process of finding another rheumatologist, I am very confused and getting very frightened...it has only been 7 months since I was in the hospital...isn't this really soon for a relapse of whatever it is I have. I do have some thickened places on my forehead and between my shoulder blades that has popped up in the last year.
Any encouraging thoughts on anything are appreciated...this is all VERY new to me, I thought my battle was with MS and now this. I welcome any ideas or thoughts on the muscle biopsy...also should I even be pushing myself when I am this week, everything is hard, am I making myself worse by not completely resting. My proximal muscles burn, ache and are very very weak. Okay...I am ranting here and I apologize, this is a whole new world to me and I am terrified of what I am facing. Oh...I didn't mention that I am now taking MTX 8 tablets a week now but neuro told me to cut back the pred to 10mg a day until I have the muscle biopsy...I am definitely worse since doing that
So sorry you are going through so much! Though I do not have myositis, I do have Raynaud's and can relate to those painful episodes! Stress can really escalate that, it's not just cold exposure!
I was genetically predisposed to autoimmune on my Mom's side, and a car accident triggered it into high gear. I went through various treatments, and did my best to slowly return to work, quickly increasing it back to 12 hours a day, and after that long day and a 45 minute ride home, I could not walk into the house, my husband had to just about carry me in. I basically worked until I could no longer walk. I did not listen to my body, I was determined that I was going to get through it, but it was not to be.
I am fortunate to have a very supportive husband, and mother, who both help me in many ways, so I understand your concern.
The best thing I did was to seek out a PhD Psychologist, whose practice promoted resilience. She helped me get through the emotional trauma, and it did me nothing but good.
I know there are others here who have myo, who will be much more help to you with that, but I understand what you are going through with work, and with health.
I hope that you can get some solid answers and some substantial relief very soon. I really do understand.
Thank you so much for your reply. This is all so scary but greatly increased because I live alone. Husband of 26 years left shortly after the MS diagnosis, both parents are deceased. I just keep pushing and living in denial and now my body won’t let me anymore…like I hit a brick wall.
I think your advice to see a Psychologist is an excellent idea, no one can understand why I push so hard and can’t seem to accept what is happening.
Wish you best of luck with your own personal struggles. Thank you again for writing me back.
The resources the Psychologist have are excellent! They help you mourn the old self and adjust yourself to new ways of thinking and doing things. After I slowed down and listened to my body, I was able to walk again, with a limp sometimes, but who cares about that!
It's an on going process really, but having a professional to 'spill your guts' to, and help you find solutions are just as important as having a good MD.
I was fortunate, I found a woman about my age, who was very easy to talk to about everything, she had taught and had worked with critically ill children in university hospitals.
I certainly understand your concerns about living alone, and hope that others will have some advice and solutions there for you too, as surely you are not the only one.
I also moderate on the Charcot Marie Tooth site, if no one here has had a muscle biopsy, I'm sure I can get some info from them on it for you, as I'm sure they have been through this.
I just hooked up a much needed new laptop and somehow managed to make this so tiny I can barely read it, so bear with me on spelling, as I can barely see it! ha! Computers are NOT my strong point! ha!
Hang in there, I'm sure you're on the right track. Give he a shout anytime you care to talk! I'll see what I can find out for you!
Sue, I’m so sorry you’re going through this! I hope you do get the biopsy. It was the determining factor of my DM. I can’t believe that your Rheumy never ordered one and never called you back when you were out of town!!
I believe stress is a major trigger of any autoimmune and I’d bet money it triggered my DM. The Raynauds was just a bonus. But I was diagnosed after being pushed out if a stressful job and while completing a rigorous college course with clinicals…
You really should be resting. The more you push yourself the worse you’ll feel. I really believe that.
I’ve heard prednisone can affect muscle biopsy results so it’s good your neuro thought of this but for now you need to either get the biopsy or get the treatment!!
Thank you Nicole for your reply. I am thankful to have found this site and feel it will be a great source of strength and knowledge for me.
If you are correct about the stress part I probably shouldn't even be here! The last year of my life sounds like something from a story book...a bad story book, you wouldn't believe it if I told you.
I wonder if meditation could help my stress level. If I could make myself commit to it daily I think it could help.
I am leaning heavy on the Lord right now and am sure if I can get past the fear good things will follow in some form or fashion.
Thanks again and I am sure there will be many more rants to come. Best of luck with your plight.
Hi Suebee, I'm so sorry that you have been on such a roller coaster ride with your diagnosis. To me, nothing has been too scary provided I know what is going on - it's when you don't know, that it can be horrifying. I am sorry that you are going through that now.
I agree with SK, that seeing a counselor or Psychologist is an excellent tool. Right before I was diagnosed, I began seeing a counselor to help me work through my fears, and relieve my husband of being the constant dumping ground for it all. 4 years later I still see her every few weeks just to keep my outlook positive, and to work through any anger or fears that come up as a result of learning to live this new life that includes my DM.
Aside from my positive ANA, my blood work didn't help a whole lot with my diagnosis. The biggest factors for me were my skin (Gottron's Papules) and muscle biopsies, and my MRIs. The biopsies showed the DM cell formations and the MRIs showed the extreme inflammation. Hang in there and know that we're here for you if you need a friend! You are certainly not alone <3
I am sorry you are so sick. I used to live on my own too. I moved back in with my parents at the age of 35. It’s hard having to accept help. It sounds like you need to go to a large teaching hospital. Any chance you could go to Baltimore, MD Johns Hopkins Myositis center? I live in IL but it was worth the trip. A biopsy will be totally pointless since you are on steroids. I too had Mtx. It sure sounds like your dr is doing all types of things wrong.
Medicine could help a lot with the stress and help keep you from the highs and lows of the illness. I believe that all of the illnesses that you mentioned that you may have are covered by the Muscular Dystrophy Association so I would see if you could get a referral to one in your area, hopefully at a Teaching Hospital. It sounds like you have a lot going on and need someone with experience in muscle disease to unravel it for you and counseling may be a good idea too. I am not sure what you have available to you but you have to seek treatment asap from what you say and sick leave might not be a bad choice if you have it before it is not a choice anymore. Most muscle diseases can be in remission for any length of time and then for some reason go out of whack and start attacking the body. You need a good Rhumy or Neuro to unravel the puzzle and get you on a treatment plan. Most need a referal so I hope your dr will refer you to the best one in your area and MDA will help with some expences depending on your area and needs. Good luck and I will let the dr suggest treatment and needs and hope you can get a good treatment plan going.
LegoGal said:
I am sorry you are so sick. I used to live on my own too. I moved back in with my parents at the age of 35. It's hard having to accept help. It sounds like you need to go to a large teaching hospital. Any chance you could go to Baltimore, MD Johns Hopkins Myositis center? I live in IL but it was worth the trip. A biopsy will be totally pointless since you are on steroids. I too had Mtx. It sure sounds like your dr is doing all types of things wrong.
I am happy to report that I have an appointment with Johns Hopkins next week on July 3rd! Was not able to get in to the Myositis Center for several months but because I had been there once before they were able to get me in quickly to see the Rheumatologist. I feel very good about that. I was supposed to see a new doctor here in Baton Rouge but they couldn't see me until the end of August...I just can't wait that long. I am getting weaker everyday, spent most of day yesterday in a wheelchair and I am still trying to see patients over tele-med as my arms allow.
Thanks to everyone for the excellent advice. Thank you LegoGal for you advice...I cancelled the muscle biopsy since I have been on steroids. I will wait now and see how JH directs me since I will see them next week.
Thanks SK...I leave for Baltimore early Wednesday morning, my appointment at Johns Hopkins is Thursday AM...praying for some answers, so very tired and weak.
You are going to the best place to get answers and yes a biopsy is a great idea abd if you get it at JH it is the best place for answers on myositis. I have an appointment there on Aug.28 and have waited fir 9 yrs for it. Good luck and hope you find answers.
That's a REALLY long wait time, Daniel, but they are our 'big hope' for so many diseases! I wish you well there!
I'm a Marylander and have been to Hopkins, I warn you ALL to allow for traffic time, especially if you are on the beltway at rush hour! Baltimore streets are notoriously bad, so take care not to hit those pot holes!
A friend just referred me to this board and your post is the first one I saw and I felt the need to join the group. Your post reminds me a LOT of symptoms I experienced starting three years ago, which ultimately led me to be diagnosed with Devic's disease. My regular doctor thought I had pneumonia. When antibiotics didn't clear it, I was sent to a pulmonary specialist, then to a research hospital where interstitial lung disease was diagnosed. By the end of 2012, if it hadn't been for a very sharp neurologist, I wouldn't be here. Mayo is the only place that tests for the IGG marker in the blood. Devic's mimics the symptoms of MS. I don't remember it, but I also had muscle weakness and fell because I was so weak. There was a lot of pain in my eye which nobody could diagnose, either. It was my optic nerve being attacked. I could not stop vomiting after gall bladder surgery. Turns out, vomiting is another sign of the Devic's. Please, please, please, ask your doctor about Devic's.
I am trying to reduce the prednisone to the point where it is no longer necessary. Cellcept daily for the rest of my life.
Thank you soooo very much for taking the time to reply. I have arrived in Baltimore and have an appointment at Johns Hopkins tomorrow, I will definitely ask him about the Devic's. I am so confused and ready for some answers. I am getting weaker and weaker, had to use a wheelchair to get on the plane. I have not had any vomitting but EVERY night now (no matter what I eat) I vomit up some foamy stuff in my throat...sorry, I know that is gross but this makes me wonder about it...I have never had this problem before...I feel like I need to belch and this foamy stuff comes up...it goes on continually for about 1-2 hours before stopping?!?!? I also have extreme urticaria to my scalp...feels like I could claw it off...a few new weird rashes, problems with expiration...feels shaky??? I can't make anyone understand that feeling, even talking is an effort at times. I am not...I repeat, I am not a whiner...one of those people that has to have a arm falling off before missing a day of work. I am struggling daily now just to see patients over the computer...,my hands and arms cannot hold up. Praying for answers tomorrow and thank you again for your post...I will do some reading on it. I have had such odd symptoms but never anything like this extreme muscle weakness.
Best of luck to you. I will be in touch and let you know what I find out. I really needed to find this place, maybe we can all help each other. I think I am losing my mind sometimes.
Fondly,
Sue
Devics Diva said:
A friend just referred me to this board and your post is the first one I saw and I felt the need to join the group. Your post reminds me a LOT of symptoms I experienced starting three years ago, which ultimately led me to be diagnosed with Devic's disease. My regular doctor thought I had pneumonia. When antibiotics didn't clear it, I was sent to a pulmonary specialist, then to a research hospital where interstitial lung disease was diagnosed. By the end of 2012, if it hadn't been for a very sharp neurologist, I wouldn't be here. Mayo is the only place that tests for the IGG marker in the blood. Devic's mimics the symptoms of MS. I don't remember it, but I also had muscle weakness and fell because I was so weak. There was a lot of pain in my eye which nobody could diagnose, either. It was my optic nerve being attacked. I could not stop vomiting after gall bladder surgery. Turns out, vomiting is another sign of the Devic's. Please, please, please, ask your doctor about Devic's.
I am trying to reduce the prednisone to the point where it is no longer necessary. Cellcept daily for the rest of my life.
Until you mentioned it in your reply, I'd forgotten about a couple of my early symptoms. In late 2010, my scalp became very red and inflamed. The itching was non-stop and I tried every organic shampoo I could find. Some of my research suggested tea tree oil would help. It didn't. I had a rash on my forehead and part of my neck as well, along with redness on my knuckles known as mechanic's hands. Nothing I tried helped any of the symptoms. I finally found a dermatologist who immediately tested me for dermatomyositis. He had previously seen one or two cases and knew what to look for.
I hope and pray that you don't have Devic's, but it bothers me to hear you detail things that eerily resemble what I went thru. My husband said I was very restless in bed, to the point he had to get the toddler rail to keep me in because I fell out at least once. I'm still missing about 4 -5 weeks of memory. That's probably a good thing. The muscle weakness is very typical of Devic's, along with the fatigue.
Keeping you in my prayers and hoping you will soon have answers.