Chronic Disease Support/Management/Non specific muscle abnormalties
I have been having a series of tests done since August; blood work shows low vitamin D, EMG shows myopathy but more specifically myositis. The Rhuematologist ordered a biopsy to be done. MRI did not show an obvious muscle to test so doctor asked surgeon to take from my lower leg (the tibialis anterior I think!). This has been done and the preliminary results show non specific muscle abnormalities.
I also had an echocardiogram done in this time which shows I have non compaction cardiomyopathy (rare congenital form of heart disease). I'm still waiting to see the cardiologist on this point! The Rhuematologist asked the pathologist to take this into consideration when preparing the second report on the muscle sample. Today I have been told it still shows 'non specific' but the Rhuematologist is double checking that the pathologist did take my heart scan into account.
The reason I am writing is that I am unsure what to ask when I see the Rhuematologist on 14/01/2013. He has written to me and said he would like to start me on hydroxychloroquine.
Should I enquire whether the biopsy was done correctly? I don't have specific problems with calves; my thigh muscles burn when climbing stairs and raising from seated position is difficult. Upper arms and shoulders are also affected as I can't put my arms over my head without the muscles burning right away. Do you think I should query if the biopsy was done on the right muscle group? I understand the doctor was looking for any of the 3 forms of myositis - is it possible that I could have the start of something which is not easy to identify currently as it has not developed fully? Is it usual in this situation to be monitored for progression? How normal (if at all) is it to get a result of non specific? - this seems to be a medical term for anything unidentifiable!
I am frustrated because I don't feel well but I'm worried he doctor is going to send me away with not having sorted this out. For your information I am 31 and live in the UK.
Any help or suggested questions to ask the Rhuematologist in my appointment would be great.
Sorry for the delay I had not seen them email with the question.
I am not a healthcare professional and I cannot give medical advise. However, it would be great to go into your doctor prepared with a list of questions and concerns. It is also empowering to be involved in your treatment.
Vitamin D - If you have low vitamin D, your doctor might want you to take supplemental vitamin D. Living in the UK it would seem difficult to get adequate Vitamin D from the sun especially this time of year. My doctor had me on Ultra D which is an emulsified vitamin D which is supposed to be easier for the body to absorb and use. It is important to work with your doctor if supplementing Vitamin D to ensure you take safe levels because it is possible to overdose / have toxic levels of vitamin D (see below MayoClinic & VitaminDCouncil).
Information on myositis - example websites - http://www.webmd.com/a-to-z-guides/myositis-symptoms-treatments-prognosis
- It seems like the causes of it are not well known and that getting the diagnosis can be difficult. It appears that the muscle biopsy is the best test for it. But it seems like any weak muscle can be used for the biopsy. http://medical-dictionary.thefreedictionary.com/myositis
- This site talks about the types and who is more often effected by each type.
Information on hydroxychloroquine - example website - http://www.drugs.com/pro/hydroxychloroquine-tablets.html
- It seems to be used for malaria treatment and to reduce inflammation. It seems to have significant risk factors so it is important to make sure your doctors know about other medications, herbs, and supplements you are taking. It will also be important to make sure the doctors are aware of any other conditions you have. You will probably need to be alert for any new or worsening symptoms. I have concerns with medications especially with the risks many medications have and especially when they are not providing a cure or addressing the root issue. However, medication is a very personal issue for you to address with your doctor. Perhaps looking at all medication options, possible risks, and any contraindications either due to other medications or conditions.
Your questions - It might cause defensiveness if you ask if the test was done right. It might be better to find a tactful way or address specific issues. Follow up to make sure the pathologist took the heart scan into account. Find out if another muscle biopsy is needed and would be worthwhile. I do not know about myositis since I have no experience with it not even with people I know, so I do not understand about the 3 types. However, it seems like it is often linked to inflammation and possibly immune problems. including autoimmune problems. It would probably be a good question for the doctor regarding if you could have something that cannot be easily diagnosed at this point. Again I do not know if the condition is usually monitored for progression again that might be a good question for the doctor. I do not know if a non specific result is common and I was not having luck searching online to find out since I cannot understand medical journals. I think non specific is a catch all when the medical community has not found answers yet.
Asking your doctor questions - I am from the USA so I do not know about doctors in the UK. If you have a doctor who does not mind a bunch of questions I would say ask them all. However, if time is limited or they do not seem willing to answer a ton of questions you might want to consider what questions are most important. I once heard a USA psychologist speak. He worked with chronic pain clients. He encouraged them to be involved in their treatment and ask questions but to limit themselves to a set number of questions and limit follow up questions. I forget the number he said but I think it was 5 - 10. Also consider what you can find out on your own. ie - reading about myositis and the medication options. If you already have some basic information you can focus on questions that are specific to you and that you need to ask the doctor.
Hope this helps.
Ultra D (just an example website there a variety of sites that sell it)
(I am not financially connected to the website - I just have shopped there & had good experiences)
Vitamin D Toxicity