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Pre-Diagnosis (a few questions)....

Hello everyone :smiley: Another newbie here so apologies in advance if I am duplicating any previous posts or questions, or indeed for my naivety. Just to introduce myself and give some background: My story so far: Although not yet diagnosed, my GP admits (upon being pressed) that he suspects I may have MS. The diagnosis ‘has not yet been ruled out’. At this point in time, I have been examined by a neurologist once and an MRI (non-contrast) of my head was returned as ‘normal’. I am advised that a brain tumour, stroke and Fibromyalgia have been ruled out. At this point in time and given the suggestion of MS, everything seems to fit into place insofar as my long term medical history is concerned. Just to cloud things, I was involved in a serious accident in 1990 in which I sustained several injuries and over the years have put many of my complaints / aches and pains down to this. Besides general aches and pains, unexplained sudden bouts of sickness and nausea, constipation, I have been suffering with difficulties in swallowing (food / drink going down the wrong tube hence choking), acid reflux, indigestion, heartburn and excessive belching for as long as I can remember. I await a barium swallow x-ray test and am now on 40mg Omeprazole per day (this has been a godsend although I still occasionally get occasional slight reflux). Matters have deteriorated since Christmas 2011. In addition to other symptoms which have slowly escalated, I have been feeling extremely washed out during the day and kipping in the afternoon at any given opportunity. Onset of Neurological Symptoms: I submitted myself to a full weekend out in the baking hot sun in late June and got extremely sunburnt. I say ‘submitted’ as I usually feel ill if I get hot but was committed to attending a couple of outdoor shows and a fete that weekend. I awoke on the Monday morning and noticed that the whole of the right side of my head and face were numb as was the whole of my right arm and hand. I also had double vision. These symptoms persist to date. I had neglected to visit my GP for approximately four years prior to this point due mainly to pressures of work - ‘ignoring’ many of my symptoms and pushing on regardless. By August, I found that I could no longer work and have been signed off ever since. Although many symptoms too numerous to mention now come and go without warning, most significantly my hands will shake whenever I try and do anything that requires a degree of dexterity and I am clumsy. I am also unsteady on my feet at times (not a drop of alcohol for six weeks now). Most frustratingly, my muscles ‘twitch’, ears ring loudly and limbs seem to ‘buzz’ particularly at night time, preventing me from going to sleep quickly. My GP initially mentioned that much of what I was experiencing may be due to anxiety. I have been on ‘Anti-Depressants’ for 5 weeks, yet most of my physical symptoms remain. I get the impression that my GP now concurs with my feeling that there may be something fundamentally wrong with me as he requested further assistance from the neurologist as result of my latest check-up. Questions Forgive me if these queries sound silly - I can’t find any answers elsewhere and thought many of you may have personal experience. I was surprised when advised that my MRI was normal given all of my issues. Could something have been missed given that contrast was not used? Is it possible that my issues could relate to a problem with my neck / spine hence not yet have been discovered? I have on two separate occasions been rushed into Hospital A&E suffering with tightness across my chest and an excruciating stabbing pain (left side) - the latter was worse on breathing deeply. On both occasions, I was discharged quickly with no explanation and normal ECG feeling a little silly, as if I had wasted everyone’s time. Has anyone else experienced this in their journey to MS diagnosis? Could this be a tell-tale sign of MS? I often suffer from extreme pain which can cause mobility issues. This pain does not seem to be reduced in any way by taking the maximum doses of painkillers I have available to me (I have tried a combination of Ibuprofen / Paracetomol and Codiene). I find this bizarre and have always assumed that I have a high pain threshold as a result. Is this normal or another tell-tale sign of MS? I am hoping that I will again be meeting with a neurologist at some point. Will it be wise to write up a list of my symptoms and history prior, or will this give rise to supposition that I am a hypochondriac? Thanks so much in advance for your replies and for bearing with my ‘War and Peace’ post :oops: I look forward to hearing of your related experiences :wink:

Hello, and welcome to the site :slight_smile: I’m not sure if everything you’ve experienced is normally associated with MS, but it is a very strange disease and can cause pretty much anything! Unfortunately there is no definitive test, and there are a lot of conditions that cause similar symptoms, so it can take a while to get to a diagnosis. The use of contrast in MRI shows up active lesions which may not yet have appeared on a standard MRI scan, but there normally aren’t very many of these at a time, if any. I would think that a spinal scan would have been more useful in showing any lesions. This is supported by your chest tightness - this could be the MS “hug”. It is believed to be caused by a spinal lesion, but people with other conditions can get it too. A high pain threshold normally refers to someone who doesn’t feel pain as badly as others. It looks more like you either need stronger pain meds or a different type of pain med. Neuropathic pain doesn’t respond to regular painkillers. So if your pain is neuropathic (i.e. caused by “fake” pain signals in the nervous system), then you would be better trying something like amitriptyline, pregabalin or gabapentin. You could ask your GP if he can let you try something. It is a very good idea to write up your symptoms and history. Try to be concise, group things that happened at the same time, and add some info about when they started and how long they lasted. Do not hand the list over the the neuro! Take a copy for him/her too, but talk through it yourself first so he/she can take notes and then give them a copy at the end to put in your file. It is also a good idea to know about your family history - the neuro will ask. Good luck at the appointment :slight_smile: Let us know what happens. Karen x

I agree with Karen Write a list of symptoms, either chrological or linked in some other way (parts of body?) Read it out to the doc, leave him a copy but he should hear you first. How you describe things face to face is a better diagnostic tool than words on paper, it is all about emphasis and explanation. My neuro was very pleased with my symptom list, the fact I could quickly read out the things I was experiencing made his job easier and no profesional would ever dismiss someone as a timewaster until they’d run a load of tests AND caught the patient out in some barefaced lies too! If you can get someone close to you to attend the meeting, they’ll remember more than you about what the neuro says and might be able to prompt or explain if you get upset/anxious. The pains in your chest could (only could) be what we lovingly refer to as ‘the hug’ aka banding but whenever you gert such severe chest pains the right thing to do is to rule out heart/lung problems 1st (as you did go to A&E; don’t be thinking they are regarding you as a waste of time - it will be obvious that you are in agony, so ruling out the worst (heart attack) is very important. Keep in touch and feel free to brouse our ‘everyday’ site too, I find lots of info and reasurance can be found just in reading there! Clarexx