hello. being back at the stage where i possibly have Ms and about to start the dx process all over again, my neuro wants to see me again in a couple of weeks to discuss some test results. I have been keeping a symtom diary since my dx of hemiplegia (which seems to now be an incorrect dx) at the begining of July. It is mainly to track the progress of the effectiveness of the meds which are increased a little at a time. Only a couple of my symptoms have improved a little bit, some are worse and i have developed new symptoms. I have detailed all the symtoms, what triggers them, how often i get them, detailed any improvements or worsening and put them in order of severity or dibilitation. i want to take this to the neuro as i tend to forget a lot of stuff or get flustered and don’t say what I mean to say but as he initially dismissed me as being a bit depressed i’m worried that he’ll think i have “health anxiety” or i’m a hypochondriach. But i really want to get over to him just how much is happening to me. Have any of you, or would any of you take a list of symptoms for a neuro to look at? If you have did you get taken seriously? I suppose the difference this time is that the neuro has asked to see me rather than the other way round and there are some test results that do strongly indicate “something” along the lines of MS or Lupus or something similar so hoping he won’t be so ready to dismiss me this time. But, I still worry he’ll think im a neurotic attention seeker.x
I took a list to my neurologist and have him the list as his copy to put on file to refer back to. I put my worse symptoms at the top and worked my way down the list to the ones that didn’t cause as many problems. At the appointment I told him my top 5 symptoms as that’s what I wanted him to concentrate on which he did. Each appointment I’ve had with him I’ve taken all my paperwork with me and I did the same thing each time jaw him which is to concentrate on symptoms that caused me the most problems. I’ve got ms and lupus - was diagnosed about 10 days ago but I fought for the diagnosis since last year as I knew I had them both and I just wanted the hospitals and consultants to realise I had them both too!!
I was asked to take a list/timescale when I was being considered for DMDs. However, I kept it very brief and to the point (bullet-points) and only used it as the framework for discussion. I did not go in with a daily diary of every single little event or variation - I don’t think that level of detail is necessary, and IS likely to get you written-off as neurotic.
Definitely prioritise the KEY things that have happened, and give an idea of frequency/timescale. E.g. is it “most days”, or “once, a couple of years ago”? I wouldn’t include very minor things, especially if they only happened long ago. For example, I wouldn’t say: “Around 2006, I had a tingly thumb”. But I would say if it was something like: “Around 2006 I had difficulty walking for a few weeks, and thought I’d pulled a muscle”.
Thanks Karina, my goodness MS and Lupus!!! I didn’t even realise you could have both. I’m so sorry, hope you’re doing ok. It’s interesting you say you knew anyway, gut instinct is a very strong thing isn’t it. I know I have a serious illness of some kind, thats not just being a hypochondriach, I just “know” and won’t be in the least bit surprised if I am diagnosed with MS or Fibromyalgia or even both. I think i’ll follow your lead and concentrate on the top 5 symptoms when i see the neuro. Thanks for your help, good luck with everything. xx
Yes, It is actually generally advisable to make a list and take them to the neuro to help you remember.
If you go to the “New diagnosis and before diagnosis” main page (New diagnosis and before diagnosis link) and search for “list appointment” or some variation you’ll find list advised and discused many times. (Remember once you’ve got to a page with an initial post and the replies you can use your browser’s search function to search the replies on that page.)
I’m confused about a dx of hemiplegia isn’t that symptom/sign? What was thought to be the cause of hemiplegia?