Have I been diagnosed????

Everyday living
1

Hi Everyone

Quick question to try and sort my head out. I have been using this forum for the last 18 months and I am truly grateful for all of the advice which I have read. I don’t post much on here, but do read others posts and gain loads of advice and reassurance. I normally post my questions on th new diagnosis board but wanted to try and get someone elses opinion who may have been in the same boat as me.

In the last 18 months I have had an incident which left me without the use of my left hand side of my body and other strange episodes, which to be fair, in reflection, I could probably put down to anxiety of the whole diagnosis process. i had an MRI and lesions were seen on my brain and my spine. I saw a neuro who done an assesment and we talked about clinical episodes were MS might have been at play.

One such episode was where I was unable to urinate and this “passing” would take about five minutes to actually start flowing. Anyway, as this episode was probably 12 months previous to the one I was being treated for, my neuro said that as they never saw anything, can’t actually class that as an episode. He then continued to tell me that I need to inform the DVLA and insurance company and i now have a 3 year driving licence for my troubles. I was offered no treatment, as I have not fulfilled the criteria of having two attacks within a 2 year period and my treatment would not change, we would simply wait and see what happens.

I returned 3 months later to see the neuro and I asked him if I had MS, he said that it looks highly likely and a lumbar puncture would be a good test to do to help with the diagnosis. So fast forward 3 months and my lumbar puncture results came back as positive for O bands. With this, still my neuro reckons that I am still only highly likely MS and I may never go on to develop MS.

Am I being stupid or am I, undiagnosed but with a 3 year driving licence for “highly” likely MS. I know that my neuro is waiting for a further attack (I guess) but I feel a little isolated now in the world of healthcare. I don’t feel like I can speak with my GP as he has said that I am under a neuro now and also MS nurses in a specialist unit.

The neuro only wants to see me in 12 months time, unless I have a “disabling” relapse, where I lose the use of one of my limbs and i am to then go to the relapse drop in centre at the hospital.

I really don’t want to go on to develop MS and really don’t want another episode for the rest of my life, but if i’m honest and if I am undiagnosed, then I would like to get my driving licence back and be able to return to doing a job which I needed a 7.5 tonne driving licence for. I also have critical illness cover on my house and this would payout if I have/ am going to be diagnosed.

Anybody else been/ was/ is in this position and care to share their experience?

Is there anyway of viewing my medical records to see what has been recorded?

Thank you for reading

2

I’d say request a new neuro, they shouldn’t leave you in limbo like that… Surely you can’t have brain and spine lesions, ms symptoms and history, and a positive lumbar puncture and not have an MS diagnosis…???

3

I would agree with haziebabie, request a new neuro, I was at the end of a relapse when first seen by the neuro, except completely invisible to the outside world, I had tingling from the waist downwards when tilting my head forward. I went to the neuro first appointment with a diary of the possible relapses that I have had which covered over 11 years. I had an MRI scan, I have multiple lesions on the brain, 2 in my spine and a neurologist appoinment confirmed this was a positive diagnosis for RR MS… No treatment at present, but lifestyle advice, and another appoinment in 6 months, contact with MS nurses and all the contact information should I require it prior to the next appointment. I found the stress and anxiety of not knowing what was causing everything was an awful thing to live with, you have my thoughts that they have let this go on so long. Request an appoinment with a different neurologist and let them know you need answers. Good luck!

4

You are entitled to request a viewing of your health records and the only way they can refuse is if it is considered that it would harm you to read them.

Ask your GP surgery and the manager should check with gp and then make an appointment for you to go and read the records, a letter should be on file from your neuro to report on his findings.

You can ask for copies of records but they can charge, it is not cheap so I would go and read them and if there is something like the neuro letter you want copied ask for just that. The surgery should copy it and only charge you a nominal fee 20p is what mine charge for just one copy.

Elljay

5

I got copied into the letters from the neurologist to doctors… Did you get this anon?

6

I got copied into the letters from the neurologist to doctors… Did you get this anon?

7

I was ‘lucky’ (if you can call it that!). Started with half of me stopping working while playing tennis in March; foot-drop developed throughout the summer getting gradually worse; taken into hospital beginning of August with heart attack/stroke symptoms; inconclusive results and neoro called in and he ordered CT scan/ultrasound scan/MRI/lumber puncture. I went back for another MRI scan about a month later. At my November appointment (unaccompanied as hubby had a meeting at work he couldn’t get out of) I asked if we were any nearer knowing what the problem was and was told “Haven’t they told you? We are 80% certain you have Primary Progressive MS - what you’ve got is what you get - it will get worse, but you will know about it”. I was then shown the door without any information, leaflets or support contact details.

At my next appointment my husband asked how we could be certain it was PPMS and was told they could carry out an autopsy! I said thanks, but no thanks, I’ll put up with the 80% certainty and get on with my life.

My suggestion is ask a direct question -" is it MS?"

If they dither ask another direct question - “if it isn’t MS what is it?”

However make sure you are prepared for the answer whatever it is. (I know someone who pushed for a diagnosis, then wished she hadn’t).

Good luck.

AnnAlf

8

I was ‘lucky’ (if you can call it that!). Started with half of me stopping working while playing tennis in March; foot-drop developed throughout the summer getting gradually worse; taken into hospital beginning of August with heart attack/stroke symptoms; inconclusive results and neoro called in and he ordered CT scan/ultrasound scan/MRI/lumber puncture. I went back for another MRI scan about a month later. At my November appointment (unaccompanied as hubby had a meeting at work he couldn’t get out of) I asked if we were any nearer knowing what the problem was and was told “Haven’t they told you? We are 80% certain you have Primary Progressive MS - what you’ve got is what you get - it will get worse, but you will know about it”. I was then shown the door without any information, leaflets or support contact details.

At my next appointment my husband asked how we could be certain it was PPMS and was told they could carry out an autopsy! I said thanks, but no thanks, I’ll put up with the 80% certainty and get on with my life.

My suggestion is ask a direct question -" is it MS?"

If they dither ask another direct question - “if it isn’t MS what is it?”

However make sure you are prepared for the answer whatever it is. (I know someone who pushed for a diagnosis, then wished she hadn’t).

Good luck.

AnnAlf

9

I was ‘lucky’ (if you can call it that!). Started with half of me stopping working while playing tennis in March; foot-drop developed throughout the summer getting gradually worse; taken into hospital beginning of August with heart attack/stroke symptoms; inconclusive results and neoro called in and he ordered CT scan/ultrasound scan/MRI/lumber puncture. I went back for another MRI scan about a month later. At my November appointment (unaccompanied as hubby had a meeting at work he couldn’t get out of) I asked if we were any nearer knowing what the problem was and was told “Haven’t they told you? We are 80% certain you have Primary Progressive MS - what you’ve got is what you get - it will get worse, but you will know about it”. I was then shown the door without any information, leaflets or support contact details.

At my next appointment my husband asked how we could be certain it was PPMS and was told they could carry out an autopsy! I said thanks, but no thanks, I’ll put up with the 80% certainty and get on with my life.

My suggestion is ask a direct question -" is it MS?"

If they dither ask another direct question - “if it isn’t MS what is it?”

However make sure you are prepared for the answer whatever it is. (I know someone who pushed for a diagnosis, then wished she hadn’t).

Good luck.

AnnAlf