Forum

To be (MS) or not to be (MS) that is the question

Hello.

I’m very new to this and have never joined a forum before…but the past year has been so horrifying, my experiences so traumatic, that it has taken me this long to come to terms. Forgive me if this message goes on too long. A lot has happened.

Last summer, I woke up with pins and needles in my left hand and foot. When it failed to resolve itself in a few days I went to my GP who said I’d overexcited my nerves through strimming my garden. From that day on the pins and needles increased in severity, along with paralysis of half of my left foot. A couple of days later, the pins, needles and numbness crept up my left leg to my trunk and up my arm to my shoulder and face. I was rushed to hospital where they CT’d me etc. I was kept in for three days at the end of which a consultant said I’d had a stroke and sent me home. However, during the next week, the pins, needles and numbness started on the right side from toes to head and I was rushed back in for possible second stroke. Whilst on the ward, a neurologist examined me and said I’d not had any strokes, but neuritis. Commissioned MRI, LP, VEPs and SEPs. (Neurologist then went on holiday for six weeks). THE LP was undertaken by a non-specialist trainee doctor supervised by a newly qualified doctor. Between them, they managed to mess it up so badly that I was crying out for Jesus christ.

The day after discharge from the hospital, a consultant telephoned me at home to say I may have a brain tumour and was sending my MRI scans to an radio-oncologist at Kings. A 1-in-5 chance, I was told. Worse odds than a game of Russian Roulette, I thought. The consultant didn’t get back to me for 10 days, which felt like 10 years. The result from King’s was inconclusive. They commissioned a further MRI with gadolinium.

In the meantime, I was growing increasingly weak on my feet through dizziness and fatigue. Then my LP results came through. O band positive. My new GP said it was most likely MS. It was our introductory meeting and I was shattered by the news.

A couple of months later, after having the enhanced MRI, I saw the same neurologist I’d originally seen in the hospital. I was still waiting to find out if I had a brain tumour or not. He hadn’t read my notes and asked me what I was so worried about? I explained and he flicked through my file, got the MRI scan up on his screen, told me it was not a tumour (huge relief) and asked me to diagnose myself. What did I think I had? My worst fear is MS, I said. Correct diagnosis, he said. A lesion is enhancing. He recommended 5 days steroids, possible DMT and referral to MS specialist.

MS specialist neuro the following month said he’d looked at my MRIs and there were not enough lesions to clinically diagnose MS. And no lesions were enhancing. Instead, I had CIS. He said there wasn’t any DIT or DIS to fulfill McD criteria.

Meanwhile, pins and needles in my hands and feet were increasing so much in severity. Went from gabapentin to pregabalin. Still on this. Sleep with wine coolers on my hands at night. And amitryptiline in my bloodstream.

The story goes on and on…too long…blood tests etc…but a year on from all of this, I’m still CIS. Feeling physically stronger. Much less dizzy. Still have awful burning pain pretty much constantly. Can’t work. I had to really pressurise my neurologist to do another MRI with gadolinium this summer to compare with last year’s…as he wanted to sign me off very soon and not see me again until I’d had another event or attack or relapse. He wasn’t happy, but agreed, and to do another LP. (I said this goes on).

The most recent MRI showed “progressive healing” of one lesion, still visible but “less conspicuous”. The other small lesion is unchanged, at 4mm. Recent CSF is o-band positive. With elevated protein.

I’ve done the research. With an abnormal MRI, o-band positive, elevated protein and residual symptoms a year on, I have about an 80-90% chance of developing Clinical MS. On the bright side, I have about 10-20% chance it’s a one-off. I’m due to see my neurologist to discuss next month. I think he might stick with diagnosis of CIS and no treatment. He might even sign me off given the recent MRI actually showed improvement and no inflammation. I am, as you say, in limboland, and have been since last summer.

Last summer I moved to my dream-house by the sea, this summer I am standing at the entrance to a supermarket raising awareness and money for a local MS therapy centre.

My reason for joining the forum though, having read many previous posts, is to be with people who can be empathetic. The loves of my life are sympathetic but they don’t know about the weird neeurological symptoms, this persistent pain or fatigue, and indeed the psychological damage that not knowing brings over a lenghty timescale. Reading your honest posts this past week gave me the courage to join, to say that I have CIS (possible MS), and that I am trying to be hopeful of a happy future, regardless of MS. I’m learning to concentrate on the things I can do, rather than the things I can’t. I have some questions to ask before I see my neuro next month, but already this is too long. Maybe another time soon?

Sorry, this has turned into a novella!

Thank you for ‘listening’.,

seahorse

Well seahorse; not a lot to say or do; you seem to be through a lot in a very short time. That Neurologist was spot on; CIS until and if you have another attack; gaud knows where the others learnt their medicine; they must have put you through hell!

If you need help to get back into work see http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes/DG_4000347

Till then remember MS is not a stop sign; its traffic humps.

George

Hi Seahorse

Found your story very interesting mine is very similar, strange incidents in my teens, 20s and 30s then huge gap until 45 when everything that had happened in the past started happening all together. My GP actually said last week that he remembers me coming to see him 25 years ago with fatigue and weakness but it doesn’t seem to make any difference to how he treats me going forward.

I have kept a diary over the years of everything and suggest you keep one too.

Be prepared for a long haul for diagnosis. I’m 50 now and have been pressing for a diagnosis for last five years now. I won’t give up and can’t wait to say ‘told you so’! Dianne x

PS this site is fantastic and you will always find support here

Hi Seahorse, lovely tag, especially as you live by the sea.

I have also been left in limbo for many years. Worse than that is the fact that between 2003 and 2010, I was given a 95% dx of PPMS. Then other neuros stuck their oars in and rejected the dx.

So I am still awaiting an elusive diagnosis…14 years on!

There are many of us and we find support and friendship on this site.

Welcome aboard!

luv Pollx

Hi Seahorse.

Knowing that there are a fair few people who read these boards, but don’t post, I thought we should continue things on here (hope that’s ok?!).

Anyway, for those who are reading, the main reason for all the confusion about stroke/tumour/MS/CIS is that one of seahorse’s lesions is a big one: big enough to show on the CT scan (which is bad for imaging demyelination) which made them think stroke initially. Really big (>2cm) patches of very inflamed demyelination are called “tumefactive” and they are very difficult to tell apart from tumours. (It used to be common practice to do a biopsy to be sure.) That’s why a tumour was mentioned.

This is no excuse for the chaos and all the waiting though. What a disgraceful shambles :frowning:

Now back to the reason for me posting: Seahorse, I thought you might find this helpful. It’s a bit out of date, but might give you some useful info: http://www.medlink.com/medlinkcontent.asp

Karen x

Hi Seahorse, Just wanted to welcome you to the forum. You’ve had an awful time but seem to be getting your head round all your troubles. We all understand how you feel and are happy if you need to rant and rave at us. Keep your chin up as George says MS is not the end of the world. Teresa xx