Was wondering if anyone could shed some light on some wording / terminology?
I’ve had health problems for a while, some symptoms may fit with MS. I got referred to a neurologist who said that he thought it was probablty anxiety related and unlikely to be neurological. However, he said he would authorise an MRI to be on the safe side and put my mind at rest.
3 weeks after the MRI, he sent me a very vague letter saying that having seen the results, he would like to meet with me again to ‘reassess my current situation’ and ‘discuss management’. Unfortunately he is on holiday so my appointment isn’t for over a month, and the hospital are reluctant to give me more information until then. After several phonecalls to my GP, I have been told that the brain MRI showed “patches suspicious of demylination”. I understand the demyleination bit, but was wondering what is meant by 'patches suspicious of '… it seems to me quite a vague description… am I right in thinking that it means that the MRI results are a bit unclear and I need more tests to be sure? The neurology dpt have been a bit vague about it all when I phoned to ask , and have said they are not able to give detailed info on the phone. does anyone have any experience / idea of what this wording indicates?
My MRI results were rather vague too, the consultant who i saw for a second opinion gave a much clearer report of my MRI indicating bright spots and a lot more lesions than my first neuro and MRI report had detailed. All of the consultant letters/reports I have seen have been quite non comittal and vague which is no help to anyone really.
Sorry you’re not having much luck BunnytheCat, it is horrible to not know what is going on in your own body
Hi Jen! thanks for asking x I was lucky enough to speak on the phone with neurologist yesterday, she was really helpful. She said that looking at the MRI, she could see about seven patches, most on the right side of my brain, but one on the left, and they look “suspicious” of demylination. She went on to say that there are lots of possible causes for these marks, but that by far the most common cause in women my age (I’m 37) is MS. She did say that she was uncertain whether there were enough marks for a diagnosis, and that that decision will be made by my original neurologist, (I think he’s higher up in the department than she is) when he gets back from his holidays. But she then said that I shouldn’t assume that means I don’t have MS, because my symptoms and also my reflexes on neurlogical exam seem consistent with it all. She has organised a evoked potentials test, and said that she thinks if any problems are detected there, a definite diagnosis will be made, and if not, maybe more scans (I havent had my spine done). She’s sent a letter about it to my GP reccommending gabapentin / pregablin for pain, and said she is sending a referal for me to the MS team at the hospital. I still have to wait about a month to see my original consultant , and she said that he would be the one responsible for making decisions re diagnosis etc. I know I was really lucky to get to speak to someone over the phone about it all… they can be pretty elusive in that department!
I actually feel much calmer after talking about it, I think what stressed me out most was having a letter that was so ridiculously vague. so I am really grateful that they took the time to clarify a few things over the phone, and hopefully I will find out more after the next lot of tests. So I am feeling lots calmer now that I have a bit more of an idea what’s going on… but I’m still trying to keep an open mind,because nothing is certain yet. And boy is the uncertainty unsettling!! although I reckon we’re all in the same boat here, and the company seems good so far!! x
Glad you have had a bit more clarification on it! and glad you are feeling a bit calmer - yes the uncertainty is sometimes worse than the knowing!
Unfortunately until you see the ‘big man’ all you can do now is go with the flow - they don’t ‘rush’ with MS I’m afraid!
Hopefully the VEP’s etc will shed some light as well ad you will have something more definite
In the meantime lean on the lovely & knowledgable peeps on this forum xxxjenxxx
Bunneythecat - I think they do months of training in ‘Vagueness’ !! Hang on in there and keep pushing! xxxxx
[/quote] All it means is that areads in yiur brain are faded eroded and they are sus myt be due to deym but they want to be certain ul orob have a neuro examination amd further tests maybe ecg and LP
Hi Sandy, Glad they managed to clarify things further for you and glad that they have referred you for further tests. Even though its a month until you see the original neurologist (which can seem like a lifetime of waiting) try and stay positive in the meantime. Keep us posted of how you get on with everything.
