I'm so confused....don't know what to to do

Hello everybody,

I first spoke to my GP about 18 months ago, about some weird things that were happening. He said that he wasn’t certain what was going on, but it was something to do with my body mis-interpreting pain signals. He started monitoring me.

A few months later, he sent me to A&E when I saw him as I had pins and needles over most of my body and it had gone on for nearly 24 hours. A junior doctor misdiagnosed me ( said it was hyperventilation) and sent me home.

GP did an urgent referral to Neurology. After many phone calls to chase it up, I saw a neurologist who was 100% certain that he would diagnose a degenerative condition before I left that day. He didn’t, so then said he’d arrange scans and further tests.

This then becomes a farce for several months as referrals to Radiology got lost several times. By the time I got an appointment for the results, it would have been a 9 week wait. In the meantime I’d also started having L’Hermittes Sign & temperature discrimination between the left and right hand side of my body.

My GP looked up the results, showed me the report and discussed them with me. There were quite a few lesions spread throughout the head and C-Spine. He told me at this point that he wouldn’t do this for many patients, but having got to know me, he knew I’d be better off knowing and then I’d carry on. I know he shouldn’t have done this, but I’m grateful he did.

When I next turned up to see the consultant, he told me that there were several areas of inflammation showing on the scan and decided that I needed a lumbar puncture. He wouldn’t comment on what may have caused the inflammation.

Guess what? The referral for the Lumbar Puncture got lost. When it was finally done, I was called to the hospital within 2 weeks of it. We were now expecting to be told it was MS. The LP showed raised protein levels but my consultant said it was inconclusive. He said he’d review it in 3 months ( end of August 2013)

At the start of August, I received a letter giving me an appointment in September with a different neurologist. I rang the number and had an answerphone message telling me I was through to the MS clinic!! I’m so glad my GP had discussed it before as it would have been a hell of a shock.

I went for the original neurologist’s appointment at the end of August, and he just said he’d decided to refer me to another colleague. I actually handed him copies of 2 sets of notes from my old GP practice and from a consultant at the same hospital in 1994. While I now remember both occasions ( 1 was slight pins and needles in my right leg in Jan 1994). I was told at the time that the 2nd incident was a viral ear infection when I was pregnant, which left me with residual dizziness for several months. I wasn’t aware that 2 separate doctors had written MS as a possible query. I’m glad I didn’t know as I would have spent the last 18 years worrying every time I felt ill.

Anyway, I met the new consultant who was amazed that the previous consultant hadn’t discussed MS with us, or called the lesions lesions!

In December she concluded that it was a Clinically Isolated Syndrome incident. She felt that I’m at a high risk of relapse so recommended injecting some form of Beta-interferon. At that particular point, all I could think of was my daughter who was due in hospital for a major operation and as I had to stay with her, I didn’t want to cope with side-effects.

There was no literature to help us, the MS nurse wasn’t present (I’m still waiting to hear from her) and given that we’ve had so many months where no-one seemed concerned I couldn’t understand why it felt like we had to make a decision there and then. Now I understand, as the new consultant is on Sabbatical Leave.

My daughter is recovering well, I’ve read up on the injections. I’m noticing every little sign or symptom and feeling that I should have started the injections.

I’m sorry for the long story, but I don’t know what I can do next. Have I just been unlucky with the hospital or is this normal?

Thanks. :slight_smile:

Wow that is one sorry story! I think you have been very unlucky. It is probably worth chasing the MS nurse if you are feeling worried. I’ve learned that you have to do a lot of chasing with the NHS as I’m sure you have. You are lucky (if I can call it that) in that you have been offered DMDs for CIS as I was refused. Have you seen this site: http://msdecisions.org.uk

Hi there you sound similar to me!

1991 - l’hermittes and had MRI and LP and evoked potential tests etc. Nothing showed. Radiation treatment I had in 1990 was blamed.

2005 - Numb left arm … clear

2008…Numb left side, weakness and l’hermittes. Passed after 8 weeks

2011…Saw neuro (privately) due to foot drop developing. MRI showed lesion in cervical spine. DX radiation myelopathy (from treatment I had in 1990.

2012 saw another neuro (NHS)who said MS (not radiation myelopathy). Had LP which was clear of ‘MS Markers’. \lesion was still on MRI.

2013 (June) had another MRI and lesion was gone. NHS neuro said I must have had clinically isolated incident.

2013 (Oct) - Went back to private neuro who DX me with radiation myelopathy and had another MRI and lesion was still there.

Now since October I have been trying to find out if the scan in June was correct. I wrote to ask the NHS neuro to ask and he just sent me letter discharging me as I had returned to the private sector. The private neuro was going to find out for me but I havent heard yet. He has forgotten. I rang the hospital but they will only answers to consultants. I just want to know if I have a disappearing/reappearing lesion or not!

Moyna xxx

I personally would email PALS at your hospital…tomorrow!! You will find the contact details on the hospital website. Repeating all the above information too them. Once you inform PALS…it can’t and won’t be brushed away and forgotten. Problems in healthcare will not improve, if people don’t do something.

Its not unlucky or normal…its incompetence!!

Good luck xxx

Since your daughter is recovering well. I would be pushing to start the interferon (IFN). I don’t understand the CIS categorisation as I understood you seem to have had possible MS episodes before - anyway - beside the point as you were offered IFN - but has the new neuro explained why they are not relevant to the MS?

I quite understand not starting IFN when your daughter who was due in hospital for a major operation but from what I’ve read its best to start DMT (IFN) as soon as possible. Has the offer of IFN been withdrawn now? Can you restart DMT proceedings with the MS nurse? Get your GP prompt the neuros if the MS nurse isn’t forthcoming?

Since your daughter is recovering well. I would be pushing to start the interferon (IFN). I don’t understand the CIS categorisation as I understood you seem to have had possible MS episodes before - anyway - beside the point as you were offered IFN - but has the new neuro explained why they are not relevant to the MS?

I quite understand not starting IFN when your daughter who was due in hospital for a major operation but from what I’ve read its best to start DMT (IFN) as soon as possible. Has the offer of IFN been withdrawn now? Can you restart DMT proceedings with the MS nurse? Get your GP prompt the neuros if the MS nurse isn’t forthcoming?

[Sorry if this is a duplicate.]

Thank you for your replies everybody.

While trying to keep my story brief, I forgot to say that I had made 2 formal complaints through the hospital complaints procedure. Unfortunately,we don’t have PALS in Wales any longer ( or certainly not with my local health trust)

The last time I saw the consultant when beta interferon was mentioned, she said that she is pro-active in her treatment and could justify me needing it, but some of her colleagues don’t take this view, so there’s no guarantee that whoever I see while she’s off would prescribe it. She said I meet 3 out of the 4 criteria, but disregarded the previous incidents 20 years ago as it seems to be too long ago.

Whilst I cannot remember anything as bad as the last attack, thinking back I seem to have had weird symptoms on and off for years.eg whenever I get sinusitis I’ve always had pain in the back of my neck, but no-one could ever explain why. Also I’ve had several years with UTIs on a regular basis and it always takes me weeks to recover from anything that other people get over in days. I just put up with that as I don’t actually like visiting the doctors or making a fuss!

I handed copies of these notes to the first neurologist, but she doesn’t appear to have seen properly. I was just lucky that I’d used my phone to take a copy when I realised I’d forgotten to keep a copy for me. My husband has confirmed that she said in percentage terms she thinks there’s an 80% chance of relapse, but she didn’t think it was imminent.

It is a nuisance as I can’t make phone calls from work and by the time I get home, everyone else has finished work as well. I’ll get on to it tomorrow as I haven’t even been given the MS nurse contact details. I won’t let it drop

My GP’s practice have been so supportive throughout all of this, and I’m truly grateful, as I have heard horror stories where other GPs just brush people off. I’m due to see the GP next week to discuss the letter from the consultant ( gp asked me to do this as soon as I received a copy). I have several friends who work in various roles in a local cancer hospital, who have commented that MS is one of the unfashionable diseases, so there’s less funding available than cancer.

Thank you for the advice and comments, and I’ll see what I can do tomorrow, to get things moving.