I'm confused by her wanting me to stop as it was supposed to be helpping me improve my muscles which feel so weak and super tight like I can't relax them. She also said I can stop the neurontin as it's probably not improving anything and not helpping my feeling constantly fatigued.
I asked her if this could be fibromyalgia...a long pause with..."I guess it could be".
She asked what the rhumatologist thought. I told her a combo of myopothy and fibro.
She also said she couldn't say what it was at this point. But I feel pulled in two different directions being told to take meds and then after a month being pulled off them??
I was just diagnosed with muscle myopothy myself and experience your exact symptoms. Infact, reading your post was like reading something I wrote, zumba class and all.
It feels miserable I know. Doing the dishes this morning my biseps started hurting after just a few minutes.
I just started Levocartine which is a suppliment thats supposed to help build up muscle fibers(or something to that effect). They think I have fibromyalgia also but I don't feel thats true. After taking one dose of neurontin my calf and feet muscle charlie horsed all night and by the morning all my muscle felt so tight i had more trouble walking than usual. Im going to just stick to the supplements.
My rhumatologist said they dont treat this with steroids but honestly I wish they would because i feel so weak - just want to be able to function.
Anyhow, from what I've experienced, yes, all the symptoms your experiencing seem to be quite common in muscle myopothy.
I'm sorry you are experiencing this also.
It's great to hear from you. Some times I wonder my head is playing tricks on me but I also realized that my legs and bicep are weak and unable to tolerate certain activities such as watering plants. I had a major work-up and will see my doctor in 2 weeks 1/17/14 for my lab work to see what is causing the myopathy. I've also notice my left eye drooping but partial and mildly since this post. I I don't know if you get these symptoms but I get shortness of breath at times also. The specialist that I see is one of the best in my area in Virginia. I will keep you posted after my appointment. Please let me know of any update with you. I know we are not alone and I felt so relieved when I heard from you. Stay strong.
Also I on the Mitochondria supplements ( I just started) which was recommended by my docs base on a book by a Dr called Frank Sinatra (not the singer). I'm taking the L-Carnitine like you Unbiquinol brand of Co Q10 enzyme, D-Ribose, Vit B complex, Alpha Lipoic acid for the small fiber neuropathy. I got my vitamins from Swanson online which was highly recommend by one of my doctors. I will keep in touch and give update after my appointment. Please keep me posted
I feel the exact same way. Like my mind is playing tricks on me. My biceps also seem to be a huge problem for me. Sometimes also the muscles in my forearn, wrist and fingers also. Does your neck and shoulder muscles ever feel like they're tight and in spasm?
I'm seeing a second opinion on 1/17/14 lol Well have news on the same day:) Nice to know I'm not alone in this.
I haven"t experienced any eye dropping, though I'll get bad eye twitching. It's not painful but it's pretty irritating.
My second opinion is actually a rhumi I saw about 7 years ago when my CPK was 6x as high as it was this past time. She wanted to give me a muscle biopsy, but I declined. I truely regret that.This current doctor I'm seeing mentioned going on all the above but said it's very expensive so only gave me the ones that can be prescribed, that way I get them free with my insurance.
My concern with the L-carnitine is that it smells so bad and can cause a fishy smell in sweat:( I know it will help but I also don't want to smell fishy because I work in very close proximity to people.
Have you noticed any issue like that taking it?
This is certainly an overwhelming thing to deal with, and the process to get diagnosed is also. I'm glad I found your post and to know theres someone to talk to. I'll absolutly keep you updated
My rhumatologist also sent me to a neurologist who did a neuro exam on me ordered another round of blood tests, emg's of my arms and legs and a brain MRI. She told me to stop taking the levocarnitine and
Sorry for the late reply. I had wrote a reply during my lunch break and my service went down and lost the email. I did not have a good appointment today and I sense yours was somewhat frustrating too. Its hard when you go to someone who has no clue about what is happening.I'm sure we are not alone and there's others out there like us going in circles trying to get a diagnosis but I've also heard about others who had to see as many as 20 providers before they go answers. What I'm trying to say is, it shouldn't be so hard if these people know what they are doing. I know I don't have fibro because I don't have what they call trigger points and I don't ache all over. Somethings I ache in my things, shoulder and upper arms but it cannot be felt by pressing the muscle which fibro people have all over. Its pain within but not from touch. i also don't have joint involvement other than my neck from herniations and spinal surgery
My first visit with my doctor was like seeing a rainbow..what an epiphany. I was pleased. finally someone who knew of my symptoms and how to diagnose me. Then he set me off to his physician assistance (PA) for my follow-up and I vow not to see her again and have asked for my follow-up in July appointment to be with the doc from now on.Don't get me wrong, I work in the medical field and I'm a fan of NPs and PAs. I'm not a fan of someone would asked me "if I had a stroke due to muscle weakness in my arms after telling me that I have Myopathy but don't know the cause since my blood work was fine but EMG was "non-specifc for myopathy but revealed mild to moderate myopathy". By the way, Most myopathy can have normal EMG. I stressed to her that my major problem was that my walking is getting worst and others are commenting on it. She asked me if I had orthopedic eval because when I walk, it looks like my hip was hurting, I wanted to scream..this is how a person with ataxia from myopathy walks...stroke like movement..waddling walk!!. I told her that I had no joint pain and my muscle weakness was more pronounce in my thigh and hip. I had extensive Rheumy eval and it did not indicate hip problem which was on my file. I was frustrated and angry. She told me to stop levocarnitine because I have idiopathic myopathy and it will not help. I ask her if I needed muscle biopsy and she said" it will be useless". Well I, I plan to not see this PA again.I also have another appointment arranged through Johns Hopkins in July. I'm too young to be walking like this. This PA is sending me to PT (the only thing that she did right) and said that a cane "was not good and sometime makes things worst and will leave it to PT" I just could not believe her. Sorry for the lengthy email. Not a good day today. After getting your email , I'm sorry that you didn't get much answers either. Together, we will come up with something. Don't give up because I don't plan on it. This disease is not pretty and I will not sit there and let any idiots get in my way.
yep, frustrating is an understatment. But I do have tons of faith in my second opinion rhumi. she was actually my first choice but it took a few months to see her and i felt so badly i needed to see someone right away.
I'm pretty much the same, not really any fibro trigger points. I do have joint pain in my knees and shoulders. One of my knees in swollen and she said I have 'drop foot' which is why i trip alot.
she said the emg is going to be most important right now, then she may want me to have a muscle biopsy depending on the results. She wanted me to have 9ne years ago and I declined, which I regret. But i promised I would do it this time if needed. I feel so horrible I'm willing to do almost anything to help them find out whats going on.
My fantasy is the Dr's suddenly realising what it is, tell me they can fix it and i feel healthy again. start up zumba again, hiking this summer...heck, just working a full shift at my job would be great!
I'll hold that wish for you too!! I know how much you must be suffering day to day too. Everday tasks are just that much harder.
I'll wake up thinking its going to be a good day, put my feet on the ground to walk, hobble to the bathroom because it hurts so much to walk...get through a shower, get dressed and realize...nope, I've just wore myself out with those 'small' normal tasks and I still have 12 hrs of work...someone please put me out of my misery!
But I'm adopting your attitude, neither of us are going to give up!
we'll come out on the other side
Sorry to butt in, BUT, everything you both are talking about, describes what one of my daughters went through. VERY VERY FRUSTRATING! My daughters final diagnoses (JPM & JDM). Juvenile POLYMYOSITIS , then later developed Juvenila DERMATOMYOSITIS. Since the two of you are adults then of course the adult forms, POLYMYOSITIS.
Thanks for your feedback. I'm very grateful and it means a lot to me. It helps to know that we are not alone. Our goal is to help each other overcome this frustrating nightmare that you have experienced with your daughters. Every bit of information or insight helps so much. I'm currently going through more extensive work-up and genetic testing with a neuro-endocrinologist. It took 8 months to get an appointment. My right side has be come more weaker than the left. I'm going to see a retina specialist due to some abnormal findings in my eyes this Thursday. Myopathy is such a general term and finding the exact type and cause has been challenging for my case. My doctors feels that I have some neurological involvement as well and can obviously see that something is wrong. 2 of my friends have been diagnosed with Myositis as well. Thanks again and I will provide some more info as soon as I hear anything. Tell your daughters to stay strong. Thanks for sharing their diagnosis with me. It may also lead to something for me
sorry its been a while, how have you been?
You are so sweet and your daughters are so blessed to have a mom like you.I hope your daughters are managing well. I will try now to keep you posted on my condition. I have to think about your daughters since sometimes doctors are clueless and it helps to know of someone who has gone through something similar. Sorry for the lengthy update, a lot has happened.
I was going to add an update after my evaluation at Johns Hopkins (JH) last Friday at their ataxia center and you must have read my mind.I have a 3 1/2 year old son who reads fully (since age 2) so he generally reads my emails when I'm responding and corrects my typos, therefore I have to wait when he's not around or goes to bed to respond to emails. He keeps me going but at times I forget to respond in a timely manner. Sorry about that..
My gait abnormality caused my doctors to think all my symptoms are due to a condition/disease called Ataxia either from cerebellum of the brain or genetic. JH Ataxia center said no, I don't have the disease and its not the cause of my symptoms. They said the gait problems is secondary to something else such as auto-immune disease and/ or neuropathy due to periods of exacerbation and remission.
I have been on Short-term disability since I last replied to you. My condition got worst from Feb to late May . Fatigue that was out of this world causing my left eye to droop, although the right side of my body is weak causing spasticity and gait abnormality. My walk got worst and neuropathy was off the chart. I could sleep all day due to fatigue. I couldn't do anything but tear up. Talking was hard due to fatigue and hoarseness. Its 6 months now and I'm recovering some and I don't think my doc are willing to send me back to work. I will find out on 9/2 . I will be very sad if this happen and I'm accepting reality that going back to work at age 43 may not happen for me. I work in health care and I now walk with a cane but showing some positive improvement.. I had lumbar puncture done in May since my condition is mimics MS a lot but the fluid came but negative for what you would normally see in MS (10-15% of people with MS have negative fluid) and everyone was shocked that I didn't have MS. My doc wants positive fluid in order to treat me plus he said he wasn't quite convinced that I have MS due to my brain MRI. MRI showed that this disease has affected the white matter of my brain (as seen in MS) and it also showed a lot of vascular changes including a rare brain condition that I was born with but never knew called "brain AVM..aterovenous malformation", which my neuros feels is stable and not the cause of my ailment. My docs have to figure this out again and I'm still left with no answers yet. This could simply be POLYMYOSITIS and I'm going to check with my docs again. I have 2 different neuros in separate practices who are working together on me.. My CPK levels are back to normal and they don't think this is Myopathy as originally thought. Sorry for being length. It will be interesting if this is Polymyositis because I have all the symptoms as well. Thanks again. You are awesome and amazing
WOW, a 31/2 who reads fully? impressed! I bet your bra size doubles when you speak of him! :) ( a saying from daughter # 4 lol) really thats wonderful!
My daughter w/ PM also developed an ataxia, her rheumy & I first was fearful of a brain tumor. Caseys gait was so bad she was getting upper back pain from the jerking. When her rheumy asked her to point to where her back was hurting, instead of her hand going to her back (which she intended it to do) it actually went away from her, pointing toward the wall beside her. He asked her to repeat it and keeping her eyes closed like the first time and still pointing away, not toward. So, sent her to get a stat MRI, thankfully it came back negative for a tumor. sent her to see her neuro, he had her to walk up and down his hallway then in front of his colleagues, then decided to do an ASO titter. The ASO titter came back high, above 600, which meant she had had a strep infection sometime, and thinking with the prednisone (steroids) she was on 60 mg daily, had hid it from us. no other treatments were prescribed to treat it. he said in a few months it would subside and it did. But after that visit her rheumy decided to have her receive bi-cillin injections monthly. ( BTW prior to her diagnoses of PM, we too were thinking of MS, because of the same symptoms, but there were no signs of WML's but we did find a Chari malformation. which depending on the level of Chari I-III will show these same symptoms. Her rheumy said hers was small and didn't feel it had anything to do with her overall symptoms so we continued to treat her for PM, which I do feel was correct for after we found the right med combinations she / we were seeing signs of improvement.
Casey later started getting weak again, so we talked to her rheumy and he agreed with us to get a second opinion. He said he was going to mention it to us ( he is amazing and love him ) so we went to Johns Hopkins to the myositis center. personally and her rheumy feels the same way, was NOT impressed with them what so ever! at least not for myositis. anyway, they said they didn't see any signs of the disease because her labs were all normal, but with the EMG she showed signs in her arms. At the time we were at JH she could hardly swallow, walk, or hold her head up. they first said we may have to put a feeding tube in, then decided not to because her blood work was normal. ( my thinking WHAT THE @_)#%^*(%! ) my daughter isn't a piece of paper with lab values!!! so after a week they told us she was going into remission. 4 months after that visit we lost our Casey to complications, damage to her heart from this disease. Although her rheumy did not take anything they said to heart, he didn't change her treatments. in January before Casey passed, she was looking GREAT! she had put on some weigh, still using her cane but only early am and in the evenings when she became tired. Casey before she became sick played varsity soccer, love to run long distance, dance swim…anything other 17 yr old girls love to do, eat, midnight runs to taco bell for that 4 meal hahaha :) hang out with her friends, bond fires with them in the back yard, college plans for med school. she and her father ( he is a medical physician) would play these medical quiz games…..she weighed 125, when she went to JH her wt was under 95. in January she was back up to 102! She talked to her rheumy, they had already started to decrease her prednisone, little by little very slowly very very slowly, but she wanted to come off the chemo, something that wasn't so damaging to her reproductive system. She always talked about wanting children, Casey loves children! So he agreed since she was putting on wt and her symptoms were improving, so he changed her to Immuran, she started dropping wt again and lots of stomach issues, N/V. so zofran was added but didn't help, after a few weeks to see if her system would adjust ( it didn't) they decided on Enbrel injections. Symptoms kinda tapered off then returned with anger, Casey being 19 then refused to let me call her Dr. she said she didn't want to bother him, that he had more sick patients to deal with, ( can you believe that??? here she is less that 95 lbs again on and off IV fluids just to keep her hydrated?)
After a wk of starting the Enbrel injections, Casey went with her younger sister and dad to take Martha ( younger sis ) on a college visit. I stayed home with our youngest who at that time was a freshman in HS. They stayed in a hotel, the morning of the college visit Casey had a seizure, husband called me and told me afterwards, and said Casey was doing better
(Casey or any of our children had ever had a seizure) and they were going on to the college visit. Of course I wanted / questioned about going to the ER instead. He said no and to call her rheumy and discuss with him, I did and gave Caseys rheumy my husbands cell number, they talked while at the college visit and decided to do activate another seizure ( controlled with the neuro) when they returned. We did and no seizure activity. that was on a friday, that Sunday Casey was feeling so much better, she spent the day outside with her 2 younger sisters, shooting some basketball, swinging the golf clubs attempting to hit some golf ball. Just really being herself after church. When we went to church that morning she was excited & happy, the visiting priest we had she enjoyed listening to, she said that morning when she found out he was there," I love listening to him, I hear his voice and I imagine thats how Gods voice sounds like". That night Casey was tired, & crying, I knew she had over done it that day, but she was really having a great day, so beautiful, and a warm spring day. maybe I should have told her to take it easy… but she wanted to sleep with me and her dad was working in the ER all night. When I woke up Casey was asleep on my shoulder and still holding my hand…..but she wasn't just asleep…. her rheumy said this disease damaged her heart.
Im sorry this is so long, thank you for allowing me to finally put this into words, this year makes it 5 yrs now, and still hurts the same. I guess what I want and will always do is to stress to everyone who is diagnosed with this disease or MD's who suspect polymyositis / dermatomyositis not to take it lightly and most importantly do not sit and wait. PLEASE take care of yourself and if you have any questions or unsure of something DO NOT hesitate to call your doctor! If they make you feel unimportant, or blowing you off, keep looking until you find one that listens and believes in you.
yes I do want to hear how your doing, and if you need someone to talk to or just vent Im here. ok
sending love and lots of hugs and prayers.
I left out that Casey was also on IVIG, twice a month every month, she started it 3 months after she was diagnosed and wasn't responding to the prednisone and chemo.
Oh my God, I'm so sorry to hear about Casey. I'm glad your response was lengthy. I don't mind at all. I needed to hear your story and your passion about this awful disease that stole your precious daughter. I pray to God to continue to comfort you and I thank you immensely for shrinking this with me . I promise to take good care of myself. Casey's back pain and her walk sounded just like me.
I'm experiencing partial remission now but I thought I was not going to make it when this illness was in its full force few months ago. I'm a nurse (RN) and works as a Nurse practitioner. I've learned so much about neuro muscular diseases due to my illness. PM was something that I didn't even think about. My friends that were diagnosed with myositis mentioned myositis to me ( they are Nurse practitioners too). One of them has RA tool. I wasn't having a lot of joint issues except for my right hip( my weaker side) which aches and pops quite a lot and my neck ( I had cervical spinal fusion few years ago due to herniated disc and had degenerative disc disease). Casey's story has touched my heart and I had no idea it was going to end this way when I started reading your response.
I see and feel your passion and I thank you again from the bottom of my heart that you shared this personal story with me. I promise to work hard to get a diagnosis soon. I don't have high confidence that I will be released to work. I have been in the nursing field since I was 21 years old as a newly graduated RN in 1992. My passion is in nursing and medicine. I learned so much from everyone. . I promise I will keep in touch with you and I thank you for keeping in touch with and sharing Casey's story with me. Again, I'm so grateful to you and I will never, EVER forget Casey :)
Firstly, to express my sincerest condolences on the loss of your daughter. I really feel for you from the bottom of my heart. No words can ever express the loss of a beloved daughter. I so wish the World was not such a cruel place at times. So very sorry.
I am elderly, 73 years of age, and in the process of about to undergo an EMG followed, possibly, by a muscle biopsy, the MRI revealed wasted para spinal muscles. I have had difficulty in walking for over a year. I use 2 canes, otherwise I gradually bend over to the right side and am unable to lift my head up. The weakness has spread to my shoulders now. Leg muscles ache and feel heavy when I do a small amount of housework. Difficulty getting up from chair and climbing stairs,
I am so tired of people thinking it is all in my head and I need to exercise more. I really hope my neurologist will give me an answer. All he has said is that I could have a rare muscle wasting disease.
My comments are for those who are in limbo as to what is the matter with them. I hope they help. Sometimes, if I have lots of rest, I can feel almost normal, but symptoms return if I do a few hours of activity. So frustrating. Have good and bad days but, lately, more bad days. God Bless you All. xx