Frustrated and confused

New diagnosis and before diagnosis
1

Hi everyone.

New here and feeling very frustrated and after some advice. I started having symptoms about 3/4 months ago (Tremors, blurred vision, dropping stuff/clumsy, lack of energy, going to the toilet all the time, finding it hard to find words).

I didn’t realise it at the time but all the classic symptoms of MS even down to the fact that my symptoms (particularly the tremor) get worse with heat. I went to the GP who was great - said I had obvious neurological difficulties and rang the hospital there and then who said they would see me that Thursday (so far so good)

At the hospital I saw a student who clearly had no idea what was wrong with me and had to ask a second opinion then decided to send me for a brain scan after the 2nd Dr said it looked like a demylination condition due to the number of different parts of the brain which appeared affected. I didn’t feel overly confident in the Dr but thought it was ok as I was getting a brain scan so that would sort it out and I would get some answers. All the while feeling quite ill until at the worst point I ended up off work for a week barely able to get out of bed.

The letter that came following this appointment was awful - didn’t document hardly any of my symptoms and talked about my son (I don’t have one!) but again I thought it was ok as the brain scan would answer any questions.

So fast forward to this week and the student phoned me to say the MRI scan was clear so it must all be in my head (possibly not quite as blunt as that but that was the gist). There was no follow up planned, no asking how I was feeling now and when I tried to tell her how I felt now and that I had deteriorated further she didn’t want to know and just wanted to know about my stress (which had been ok until then).

I have taken a few days to process this and not be reactionary, but my gut feeling is telling me not to let this go. This is not all in my head. I am person who has always been super fit - I did a 140 mile bike ride back in June and now I cant even do 10 and I fell over trying to do yoga last week as my arms couldn’t hold my own body weight not to mention the fact that I cant pick anything up without dropping it.

Whilst a clear scan is obviously a good sign I just feel like I have been totally dismissed and so cant feel confident that even this is accurate. Someone I work with has also since told me I should have had brain and spine with contrast?? I just had a normal MRI of my head.

So I have loads of questions…

Has anyone has a clear scan initially then been diagnosed later on - is this possible?

Should I have had a spine scan too and with contrast?

How easy is it to miss MS?

I don’t want to sound like I am desperate for a diagnosis of MS - I know there are lots of people on here who would love to have a clear brain scan but after it was suggested and I looked up the symptoms it was kind of like the jigsaw pieces slotted together - now I’m back to the complete unknown again.

Sorry for the long ramble

2

404: This page could not be found This video is useful. Im sorry for ur experience. Try asking for a c spine atleast especially if you are deteriorating keep going to your GP he/she will sort something out. Maybe a lumbar puncture aswell.

3

Hello

It does seem as though there is something not right with you, so you should try to follow it up. Your experience with the neurology department appears to have been a bit flaky. Having results of an MRI reported to you on the phone instead of either in person or at least in a copy letter sent to your GP is odd.

Perhaps you could phone the neurologists secretary and ask if you are going to have a follow up appointment with the neurologist (ie not a student!)? If the answer is no, ask if a letter has been sent to your GP with the neurologists findings and results of the physical examination as well as the MRI and any further action. If a letter has been sent but you’ve not been sent a copy, ask for one. If a letter hasn’t been sent, ask if there will be one. If a follow up appointment hasn’t been arranged, ask if you can have one. You shouldn’t need a new referral from your GP, but if necessary, you might have to ask for one.

If at any follow up appointment you are seen by a student rather than a qualified neurologist, if possible tell them that it’s a bit unsatisfactory and you’d like to see someone qualified and experienced. If necessary, contact the PALS (Patient Advice and Liaison Service) at your hospital.

In terms of the clear brain MRI, it is of course possible to have a clear brain scan but have lesions in your spine. But I’d think that quite a few of your symptoms would show as brain rather than spine lesions. Spinal lesions (I think) would be the ones that effect your external nerves (ie, arms, legs, bowel and bladder). Whereas other symptoms would show up in the brain (blurred vision, fatigue, cognitive problems etc). So it is entirely likely that the information given on the phone by the student was in fact correct, that a clear brain MRI does mean that it’s not MS. Although clearly you have no confidence in what little information you’ve been given and could do with hearing directly from the neurologist.

If of course it’s not MS, then you could do with being steered in the appropriate direction to find out what has been causing your problems. So either a neurologist or your GP should be able to direct you further and/or refer you to another specialist as appropriate.

Best of luck.

Sue