Forum

Confused!

Hi,

I posted a thread a question a few hours ago but it hasn’t shown up, so I’m not sure if it didn’t go through for some reason? Wasn’t sure what to do, so I’m trying again just in case I pressed the wrong button last time. Appologies if I’ve got it wrong :confused:

Anyway:

I was referred to neurologist after experiencing several episodes of ill-health over a 12 month period.

The neurologist did a very brief examination, noted that I had a history of depression, and said that he thought my difficulties were anxiety-related, not neurological. He was very open about the fact that he thought my difficulties were related to mental-health issues and that he would not need to see me again, but also stated that would be very willing to organise an MRI jut to be safe and to put my mind at rest. He sent a letter to myself and my GP to this effect.

I had the MRI 3 weeks ago, and received a second letter from the neurologist, asking me to come back to see him to ‘reassess my situation’ and ‘discuss management’. He is away on holiday & my appointment is about 6 weeks away. The hospital have said they can’t discuss details over the phone, and all my GP has been able to tell me is that my brain MRI showed 'patches suspicious of demylineation" .

I understand what demyleination means, but am confused by the wording “patches suspicious of”. Am I right in thinking this means the results are not clear-cut, that I will probably have to wait and see, and that my difficulties may indeed by anxiety-related rather than neurological? I understand why this might be the case, but am still concerned and confused, especially since the letter states that I need to discuss “future management”. I am very confused by the vagueness of it all!!! Has anyone had experience of similar wording, and if so, so, what did it actually mean? (I have asked the hospital but they said I need to discuss it at my appointment, which feels a long way away!)

Many thanks to anyone who can advise x

Hi Sandyb,

If it is your first post on the forum sometimes they get held for moderation, you didn’t do anything wrong!

It sounds like the neuro/radiographer is not convinced by what they have seen, neuro’s are very good at being vauge! I once had a leter saying ‘I could be dx with rrms’ after he told me i had it!

This could lead your neuro down the wait and see route or they could ask for another MRI, maybe one with contrast, which will help them see what’s happening better. Maybe a lumbar puncture could be requested too?

If you have lesions showing on your brain i wouldn’t imagine that they were because of anxiety, however they may not be MS related either.

I hope the wait is not a long one and you get some answers soon.

Laura x

Thankyou for the support Laura x

At times I feel almost a bit angry that quite serious physical symptoms were very nearly dismissed simply because I have previously experienced mental health difficulties… (at one point I couldn’t walk, my optician has said my left eye shows signs of ON, the reflexes on the right side of my body are ‘rather brisk’ (another rather vague term from the neurologist’s letter LOL) and my leg has been somewhat odd to say the least for quite sometime!) But then I try to remind myself that the doctors do know what they’re doing, and they are just looking for the right answer. And I know that anxiety can manifest in very wierd and wonderful physical ways, and that should never be underestimated or de-legitimised. I’ve spoken with my lovely GP about my reaction… that although I will be hugely relieved if further tests come back clear, I will also feel somewhat silly if I have made a fuss about nothing! But regardless of that, I guess it is important to check out the physical side of it all, especially with regards to lesions on my last MRI.

I guess there is no way to know for sure other than be patient and wait for things to pan out. Have resolved to distract myself as much as possible, so am now settling in with my hubby to watch a good film and try to switch off a little!

thanks again for your support… hope you are doing ok too xxxx

hi i am 36 years old and have had several problems over the last few years. here is are some of my symptoms… blurred vision,double vision,floaters and shadows in vision,pins and needles in head face and left side in hands feet etc,vibrating sensations in legs arms and privates,off balance falling to left side,feel dizzy and have head spins, headaches,really tired, no energy,terrible pains in ankles, wrists, hip, knees and lower back and loads more.also for last five years my knee gives way all the time, been on crutches and legbrace on and off. now been told i need an operation to repair damage. i went to gp with my symptoms and he did full bloods etc to rule out everything like diabetes thyroids etc. all normal he then said he thinks it might be ms. saw another gp who also said ms.i was referred to a neurologist. also went to hospital a and e as i was feeling so bad and two drs there also said ms. saw another two gps who said ms also.finally after a 4 month wait i had my neurology appointment yesterday. as soon as i walked in he said he didnt think it was ms and probably stress migraines and possible sleep apnea.he didnt do many tests only asked me to stand feet together in which i nearly fell over as balance so bad, shined torch in my eyes and drew something along my feet which i could only feel on left side. he didnt bother to ask about the symptoms i am experiencing.ihad written them all down on some paper which he took and very briefly looked at. he said he will arrange an mri to put my mind at rest and just incase. but again said its unlikely to be ms. i do not feel stressed and not aware i have sleep apnea or migraines. so im totally confused as felt like he just dismissed anything. please help. im soooo confused and frustrated.fed up with all the pain and feeling this way all the time with no help. thanks