Help writing a letter to neurologist please.

New diagnosis and before diagnosis
1

Hi,

I wonder if anyone could help. As a few may have seen from my other posts I am stuck between a rock and a hard place with a diagnosis of CIS no MS nurse a GP that says they are unable to help and a neurologist who never replies to calls. So i thought maybe I should email/write to him so there is a trail and therefore more likely to get a response. Do you think this may work?

My difficulty is explaining my symptoms and wondered if anyone is able to help write it English haha.

So I have intermittent weakness in my left arm which stops me gripping and carrying objects.

I have severe pain in my fingertips which feel like I have slammed my fingers in a door.

I confuse words and/or forget them completely. They are on the tip of my tongue but they won’t come out. As I am a teacher (this can be problematic

I am struggling to use my hands as well as I was, writing, texting and general little movements seem very tricky at times. Again this is intermittent

I am beyond exhausted

An odd one I get hiccups almost every time I eat or drink. Could this be a related symptom?

these are all fairly new symptoms and completely separate from my CIS symptoms which was mainly ON

lastly approx 10yrs ago I had a huge problem with pain I had all sorts of treatment and absolutely nothing worked to relieve it I ended up on fairly strong medication I’m unsure why it has never occurred to me before that this could be related, I have therefore never mentioned this to my neurologist. Do you think this would be a good idea to add into the letter?

I am not worried wether my diagnosis stays as CIS or something else but would like to be taken out of the limbo where neither party will help so access to an MS nurse or similar would be a great start

If I wrote a letter like this explaining my symptoms is he likely to understand? If not can anyone think of any better way of wording it? I feel like I have to be more proactive in getting some help now so I’m very greatful of all your help and insight

sammy

2

hi sammy

i agree that an email or letter to your neuro is a good idea.

put it all in whilst trying not to waffle.

even saying that access to an ms nurse would be great.

if you have a diagnosis of clinically isolated syndrome, then basically you have sclerosis without the multiple.

it makes sense to me (ha ha) to even offer a DMD.

good luck

carole x

3

Hi Sammy

As you’ve seen a neurologist recently and been diagnosed, albeit with CIS, not MS, I don’t know if you need to repeat all your symptoms in a very long list.

I would suggest something along the lines of:

You may remember, I saw you on … (date) and you diagnosed me with CIS. This confused me slightly as previously, on …(date) I was told I fit the criteria for MS. I do understand that you wanted to adopt a ‘watch and wait’ attitude in case I did not experience further symptoms.

However, when I saw you, my most urgent problem was optic neuritis. Since then, I have also had problems as follows:

(List your groups of symptoms such as:)

  • Upper body (arms, hands, fingers)
  • Cognitive problems (memory, word finding, etc)
  • Fatigue

(You could include when these things began and whether they are constant or come and go and if so, frequency, how long they’ve lasted etc)

I would like these symptoms to form part of my medical records.

I would also like to be considered for a disease modifying drug. I understand that only certain drugs are licensed by NICE for CIS but to be honest, I cannot see why I am diagnosed as CIS since I have clearly had more than one episode of a demyelinating relapse.

I also believe that I should qualify for a DMD because I fit the McDonald Criteria of having had more than 2 relapses in 2 years.

I am very concerned about further relapses which could affect my eyesight; other possible relapse symptoms are also worrying me as I currently work as a teacher and I do not want my health to impact severely upon my ability to continue my profession.

This is obviously my idea of a draft letter, using some of what you have said before and some of what you’ve written above. You could of course include your pain problem from 10 years ago, but as it wasn’t considered neurological at the time, the neuro would possibly disregard that anyway. Use as much of this (or none of it!) as you like, chop and change it to fit in with your style and anything else you need of want him to know.

If you still don’t have an MS nurse, you could include that you would like to be referred to one (assuming there is one for your area).

I hope this is useful in at least helping you to get your thoughts in order. You might find it aids a start, and then you can ignore everything I’ve written and put it in your own style.

Best of luck.

Sue

4

Wow sue that’s perfect exactly what I wanted I just couldn’t put it together!

Thank you so much.

5

That’s OK. Having seen quite a few of your posts before (and going back to remind my stupid brain!) I could pick out what I thought were the relevant bits.

Just fiddle about with it till it says exactly what you want to get across.

I’m glad it’s useful. Hopefully it will help you get what you need from the neurologist.

Sue