January 20, 2014 at 4:12 pm #75191Diagnosis vague – ‘MYOPATHY’
I have been searching for somewhere to ask questions or relate to anyone else but have found it difficult until I saw this forum. In addition, I am quite depressed at the moment and find it difficult to speak so I’m going to try.
I’m 32 and 2 years ago I consulted a rheumatologist as I was always tired, difficulty getting up stairs, burning sensation in my arms when combing/washing hair, can’t lift pots/pans, muscles cramps/spasms/twitching etc. etc. I had loads of blood work done, and EMG and a muscle biopsy. Blood was normal and has been ever since (small vitamin d deficiency but that’s under control now). EMG showed myopathy (specifically myositis) and muscle biopsy showed mild abnormality in muscle fibres. Doctor labelled it ‘myopathy’ and sent me away with steroids and hydroxychloroquinne. I have now been on these medications since early February 2013. Since then I have seen 2 further doctors; another rheumatologist and a neurologist. All 3 have different opinions – first said myopathy probably from viral conditions but unlikely to get better but would likely remain stable. Second said myopathy with ‘noticeable weakness’ in strength’ and was unsure if I would get better or worse. Third has now said post viral myopathy which I should ‘exercise out’.
I am immensely frustrated. I use to swim and intend on continuing in the future but at the moment I am coming off the medication as the third doctor said it is no good for me as I do not have inflammation (which I agree with). However, I have felt this way for 3 years now and have exercised so the chances of me ‘exercising it out’ are slim?!! Although progression is subjective without tests etc, to confirm this, I feel that it is progressing. I now have weakness in my jaw and neck when I eat as I get tired easily when chewing. It’s making life a misery. I also find holding my head to be difficult as it seems to weigh a ton. With 3 different doctors, and the last one being especially dismissive and sending me on my merry way, I no longer want to see a doctor but feel very frustrated and saddened by the fact I can not get answers.
I must also mention that I have been diagnosed with a heart condition – left ventricular non compaction cardiomyopathy – which is a rare congenital disease. My cardiologist thought that the muscle problems could be linked but the neurologist has also dismissed this and said it is just a coincidence.
I work 4 days a week (weds is my day off as I need a rest in the week!). However, I am currently at home feeling the effects of coming off plaquinil. I have achy joints, hands hurt to type and write, stiff neck, painful muscles, exhausted. I am assuming that this is the medication? Anyone been on this medication and had his effect?
I feel guilty for being at home and get sick of having to wake thinking about how I’m going to feel. I told myself I would not let this get to me but it’s kind of crept up on me and I’m struggling to come to terms with whatever it is I have. The doctors make it harder because I now feel like a hypochondriac. I have tests showing ‘abnormalities’ so why does the neurologist dismiss these? It seems like a long road to a real diagnosis and finding someone who can help. I do not blame the medical profession because diagnosis must be tricky if it isn’t black or white. Especially if it’s genetics. Can anyone suggest what I should do now? I read somewhere that on average it can take 11 years for a correct diagnosis when it’s neuromuscular! Has anyone shared my frustration?
Thank you for listening.
CarolynMSTINKERBELLParticipantPosts: 3Joined: 20/01/2014January 20, 2014 at 5:02 pm #93290Re: Diagnosis vague – ‘MYOPATHY’
Oh I have been where you are many many times, do not feel guilty, you have genuine feelings for genuine reasons – but it is the conscientious part of us that makes us feel guilty.
Diagnosis in the modern medical world is a minefield when so many conditions can have the same or similar symptoms to differing effects – we are all unique individuals.
Has any of your medicos mentioned ME? Again, I have no experience or knowledge to fall upon and it has likely been ruled out but it is nice to know that something has been signed out.
I was decades before a full diagnosis was made, they knew it was MD, but they were not sure of which one although there was a group thought it was FSH – it was not until a medico not knowing what to do sent me for a genetics test that is was confirmed.
As with 99& of tests, they can only ask a specific question “Is it this?” and the results will be yes or no .. they cannot ask “What is it” and get a full answer.
Stick with it, do go to Doctor’s even if it is just to tell them that they are wrong .
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015January 20, 2014 at 8:46 pm #93291Re: Diagnosis vague – ‘MYOPATHY’
Thanks for your encouragement. It gets very confusing & stressful! My GP has my condition listed as MD but when I corrected him he said it didn’t matter as it was all the same!! It seems he was referring to treatment (which it appears to be none for most MD). I asked about ME & CFS but doctors say it isn’t that – my tests do show abnormalities in the muscle & ME wouldn’t show that apparently. Ruled fibromyalgia too as I do t have ‘enough’ markers. I’ll have to keep searching. It just worries me whether it will progress as I’m always unwell … So it seems!!MSTINKERBELLParticipantPosts: 3Joined: 20/01/2014January 20, 2014 at 10:32 pm #93292Re: Diagnosis vague – ‘MYOPATHY’
Thanks for your encouragement. It gets very confusing & stressful! My GP has my condition listed as MD but when I corrected him he said it didn’t matter as it was all the same!! It seems he was referring to treatment (which it appears to be none for most MD). I asked about ME & CFS but doctors say it isn’t that – my tests do show abnormalities in the muscle & ME wouldn’t show that apparently. Ruled fibromyalgia too as I do t have ‘enough’ markers. I’ll have to keep searching. It just worries me whether it will progress as I’m always unwell … So it seems!!
Welcome to the Forum.
Sorry you are feeling the stress of these issues. This is all so understandable and so familiar as so many
of our members have been down this route. Muscle weakness / stiffness, possible diagnosis of ME / CFS / FMA,
lots of confusions and depression. GP’s not fully understanding, long delays. These are all things that are
common on this forum. There are many threads discussing them.
Currently there are 64 different types of MD, including many myopathies. It is not surprising that some people goes years
before diagnosis, some never get a full diagnosis.
What you are describing sounds familiar to many of the people here. Feel free to ask questions, browse
the site or just vent.
"Even if you are not paranoid, it does not mean they are not out to get you!".taungfoxParticipantPosts: 4,630Joined: 27/09/2010January 21, 2014 at 12:18 pm #93293Re: Diagnosis vague – ‘MYOPATHY’
I am pleased they have ruled out ME and it sounds like they are working through a long check list of possibilities. It is hard to stay strong as you feel you are not getting answers, not getting any sense of diagnosis, yet the symptoms persist.
I think most of us under the MD umbrella [which in days of old included MND & MS] will tell you that each type has its own path in each individual. Try not to stress, you are far from alone in these feelings and issues.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015February 9, 2014 at 9:01 pm #93294Re: Diagnosis vague – ‘MYOPATHY’
Hi. I’m relatively new to this forum, but so far it’s been the greatest support I’ve come across . I am in very similar position to you. Was first diagnosed with ME in 2007 but have since been found to have slight clinical weakness in climbing stairs or getting up from crouched (frustrating as the weakness has been ruining my life for years and years, and only now have they called it weakness!!) and also a very raised ck level. So the rheumatologist has given up trying to label me with poly myositis or lupus etc. I too tried all the drugs you have but they’ve found no inflammation rendering the drugs pointless. So now the neurologist calls it a genetic myopathy and he believes it will progress slowly and show itself to be md. The gp still says it’s chronic fatigue though. It makes me mad! So annoying not being taken seriously. And being given the wrong advice. My gp did an exercise referral for me but the neuro says is a bad idea. Basically, he says I should exercise but it means not exhausting myself in normal tasks first, so that I’m able to exercise. The other annoying thing is that according to the drs the pain/cramp I am debilitated by, the poor immune system meaning I’m constantly battling virus’ and the total exhaustion and sleepiness is not characteristic of MD. But ppl on this forum say it is. I’ve also realised that the drs are great but really without being willing to spend thousands on all the many genetic tests there is actually very little they know. And if new strains of md are being discovered then surely they can’t say that our symptoms are not characteristic?? I too feel guilty and angry. I also feel like perhaps my depression is causing the symptoms, but I’m told by drs and my husband that that’s rubbish- the fact that my blood ck is sky high proves that. I’ve been offered a referral to Newcastle as it’s a leading md centre. Perhaps that’s open to you? I did have to ask. The thing with being referred is that Newcastle will be able to test for more. I hope you get some answers. In the mean time- don’t be hard on yourself. And follow what your body is telling you. I stubbornly carried on exercising and constantly overdoing it. I don’t think it harmed or harped tbh- but now I’m too tired to do much at all. And I can’t envisage myself running now that I struggle to climb stairs quickly. I guess it progressed so slowly that every now and that it takes a certain lost skill to make us realise how bad it’s got. It changes who we are. One thing that is irritating is that there’s no info out there as to how the various dystrophies and myopathies present at the very earliest points of illness. So it’s hard to know whether what we are feeling is indicative of any particular diagnosis. I would still say most ppl wouldn’t guess that I have a myopathy. However, it’ affects every part of my life. I worry about stairs and avoid them but can still climb them without being too noticeably disabled. It’s hard for me to accept that it might be MD. When I function. But mostly I sleep and still no answers!! Wish you all the best…. Keep us posted. XxpippaParticipantPosts: 126Joined: 02/01/2012July 17, 2019 at 10:40 pm #179790Reply To: Diagnosis vague – ‘MYOPATHY’
hi, I know it was years ago since your post was written, So, sorry for the late reply. I’m 39. Since I was 31 I’ve noticed joint stiffness. GP sent me to a rheumatologist. They just said it’s related to having children a hormonal thing that should settle down. Since then especially the last 3 years I have much of what you’ve described. I feel my head is heavy, sore neck muscles that feel weak. Burning in my lower arms and hands when I’m writing, hanging out washing, and housework. My arms feel weak, I have hot patches/sensations on my lower legs. I have wide spread twitches random all over. My fingers feel not strong, and not nimble. Worse in the cold. I think my left palm is different to my right side. The GP thought so too, I had an EMG and conduction test came back normal, except for an old long-standing pinched nerve or something on the right. Not sure if it’s relevant to this. All my bloods came back normal except for ANA but they don’t think that’s significant. I also have random pain that comes and goes all over, some days worse than others. Jaw pain, neck pain. Also lots of muscle stiffness I feel much older than my actual age. Then it goes and I’m okay for a while. I would love to have an answer I’m awaiting a neuro appointment been 7 months now. In all of this I don’t have significant obvious disability. But I do feel it’s getting worse and I don’t know what the problem is. It’s seems some stories here are similar to mine. That’s for the opportunity to read others stories and the chance to post mine.Dahlia79ParticipantPosts: 0Joined: 17/07/2019
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