Forum

Hi

Hi everybody. I’ve been lurking on the forum for a bit just reading the different threads and thought I would say hi. I haven’t been diagnosed with anything yet and have been informed that I won’t be getting to see the neurologist until November.

I originally went to a physiotherapy walk-in clinic as I have intense pain in the back of my neck. I mentioned how it had made my left side much weaker- dropping things, falling over and losing my balance, drop foot which I’ve had for a few years getting much worse. They did some neuro tests which showed problems with my co-ordination such as the finger-to-nose test and heel running up the shin, and told me to go to the GP. GP reffered me to neurology 7 weeks ago and I won’t be seen until November. My neck is still a literal pain-in-the-neck and the physios are refusing to see me about my neck at all until I have seen the neurologist and they give physiotherapy the go ahead.

Symptoms are just very very slowly getting worse. Having some problems with my walking as I’m having difficulty keeping balance, I wobble about a bit when standing still with no support, and I’m slow and clunky on the stairs. I’m finding my word-finding abilities struggling, I find writing more difficult, and my typing has way more errors in it then it used to. I’m also finding some difficulties with my swallowing but, I’m okay as long as I concentrate.

I did have an MRI of the brain only about two years ago due to drop foot, pins-and-needles constantly reoccurring and in weird places like my face and patches on my back, and joint pain. The neurologist was not nice at all to say the least and I dismissed the symptoms and I was sure they were all down to joint hypermobility anyway. I did request to be seen by rheumatology to be assessed for EDS but they refused saying there was no point as there was no treatment for hypermobility.

I’ve just lived with the symptoms until about february this year when I got the pain in the back of my neck and things started getting bothersome. I asked the physiotherapist if hypermobility could cause all the problems and it was a trapped nerve from it but he said definitely not so oh well.

I went on this site originally a few years ago when MS was suggested in the hope to get ideas on how to live with some of the symptoms as, even if its not MS, the symptoms still overlap. I have been looking at ataxia sites as well as my symptoms are ataxia symptoms but there isn’t much about ataxia at all really.

I stuggled with my symptoms before as they were invisible and people would often forget or not understand them but now my walking is a bit odd I’m worried about getting looks and it being visible! Just can’t win really haha :slight_smile:

No point to this really apart from just making an introduction of myself I guess.

Hi Emma,

Nothing very useful to say really but just wanted to acknowledge your post! If you have a Neuro appt booked, it may be worth phoning the Neuro Secretary to ask to be put on a cancellation list, this may give you a small chance of getting an appt sooner if someone cancels one.

It’s a good idea to make a timeline of symptoms as best you can remember, when things started, how long they lasted, whether they fluctuate, whether anything seems to trigger them. This will help a lot in the Neuro appointment when it’s difficult to remember everything!

Did you have MRI with or without contrast 2 years ago?

Also worth mentioning (and this is just my experience) - when I had problems with my foot, leg, arm, hand etc, I was given MRI of both brain and spine - and ONLY the spinal one showed anything up.

So your previous MRI of brain only may have not given the full picture.

Like you I initially thought of other things and went to a chiropractor thinking trapped nerves etc .

Your last Neuro sounds a little dismissive, especially as you had demonstrated oddities with neuro tests at the walk in clinic!!

Hope someone else may be able to offer more to help, we can only really tell you of our own experiences, but of course this builds up a picture of how different things can be for everyone

Minnie x

Hi Minnie, thanks for your response :slight_smile:

The MRI I had was without contrast and just of the head. The writing things down and timeline is a good idea which I definitely need to remember to do! I’m definitely going to be nervous going to see the neurologist as the last time I went, I walked through the door and the neuro said “Well why are you here then? You look young and healthy. There doesn’t look to be anything wrong with you. Well? Why are you here? I don’t have any notes on you.”

The problem was, I didn’t know the exact reasons I’d been referred to the neuro because the GP didn’t tell me that she had referred me! I thought it was a connective tissue problem. At least now I know that I’ve been referred and it is a neurological issue of some sort (well, something with neurological symptoms at least!).

I’m thinking of going back to the GP to say that things have gotten worse since I initially went as I’ve been referred as a routine appointment. The wait is really frustrating as I like to just find the problem and then find out how to deal with it. At the moment I just have a list of potential differential diagnoses and am trying to learn everything about all of them so whatever the doctor says, I know what they are going on about, the clinical pathways, what to expect with treatments, and general prognosis etc.

It’s really great to read about everyones experiences. It helps to know I’m not the only one and other people understand.

Emma.

I think in your position I would revisit the GP and get it noted down that you are experiencing more/worse symptoms and ask whether the appt can be reclassified /upgraded from “routine”.

Failing that definitely ring Neuro Secretaries and ask to be added to cancellation list. I was due a review after 4 months, but waiting times were 6 months plus - I chatted with Neuro Secretary a couple of times and a couple of weeks ago she rang me to offer me a next day appt!! (Slightly different scenario as I was already semi diagnosed)

Or, ask GP if they can refer you for a spine MRI with contrast?? That way, if they agree, the scan results will be available for when you get to see the Neuro, which could speed things up a little.

I do remember how frustrating it is to have no clear cause for symptoms, hence why we call it Limbo Land I suppose! Or, you could see a Neuro privately if you can afford it, then drop back into NHS system?? Not sure of the ethics of this, I’m really just brainstorming out loud!

There are a few very experienced members on here who may be able to suggest other ideas too.