Hi, it must be very frustrating for you when you are given a diagnosis without a diagnosis. I dont think the consultants realise what they are asking of us when they say we have to go away and learn to manage the symptoms. Its alright for them. They are not having pain, fatigue, brain fog etc so cant possibly understand what we have to go through.
I went to my gp about 2 months ago because the vague symptoms that I had had for many years had always been explained away due to other conditions and diagnoses. Recently, I was experiencing quite debilitating muscle pain which seemed to start with my upper arm and pain in my hands and the gp noted it but didnt comment on it further. Since then, all my muscles hurt with a range of severity of pain, I have real fatigue which I have suffered from for a long time, I get wierd nervy pains and sensations in lots of my muscles, I have bowel and urinary problems, I have mental brain fog with problems with memory, recall, depression and problems with speech. I have occasionally been having difficulty swallowing with frequent bouts of swallowing the wrong way. I sometimes have vision problems but they come and go. Up until now, I have been diagnosed with IBS and was given medication which made things worse, urinary incontinence which i am soon to have an operation to rectify, manic depression, which is controlled by a shedload of medication (for years), chronic inflammation of the sacro-ileac joints in the pelvis (now on morphine for that) which is getting worse and fatigue for many years, which can be crippling and I have just been told that I already have a diagnosis of M.E., which I didnt know. So there is a lot going on. I now believe that my muscle problems extend to the workings of the bowel, bladder, abdomen, throat and the brain.
I am going to my doctor on friday this week (2 days time) and will be presenting my fears to him. I dont want to be scared because theres no point in putting myself through mental anxiety until its either confirmed or refuted. But there does seem to be an awful lot of similarities of my experience to the research I have done into the condition. I joined the forum to read other peoples experiences in case I have missed something crucial to MS that is not present in me.
I had an MRI a few weeks ago of my whole spine only because a specialist who dealt with me years ago was interested in a birth defect in my lower spinal cord (a psyrinx) and he wanted to do another MRI to see if there were any changes to its presentation. It may be my chance to get them to look for lesions and finally be on my way to an explanation for my symptoms and even a diagnosis.
While I wait for all that, I take morphine and dihydrocodiene to cope with the pain, I allow myself to abandon a normal sleep pattern and sleep when my body feels it needs it, even if that means me being enthusiastic at cleaning my kitchen at 3am. I just accept that i have bowel and bladder problems and treat accordingly and I am generally a very positive person, having a lifetime of mental health difficulties, so I know to give myself a break if im tired and depressed and get out of it by achieving things. Things like, Ive managed to make a cup of coffee even though it hurt my hands, or getting a load of washing into the machine (hanging the washed stuff up is my following achievement!). Even getting dressed can be a big achievement! But regular visits to the GP is essential as he can help suggest medications and therapies which might improve your life experience until such time as you get a diagnosis, even if this takes another few years. Hope this helps.