A Little help

New diagnosis and before diagnosis
1

Hi all,

I am hoping someone out there can help me a little, or at least stop me feeling like I’m going mad!

A little about me and the situation I’m in;

Back in July’12 had what was said to be a TIA and was admitted to hospital. My MRI showed 2 Hyperintense Leisions in the Periventricular area of the brain. I recovered, went home and that was that.

Suffered a few nasty ‘aftermaths’ i.e extreme fatigue, tingling, burning, numbness.

In Sept '12 suffered another ‘episode’ which was much worse - total paralysis on right side of body, numbness, loss of speech, tingling and right sided facial droop. I was admitted to hospital where i stayed for 10 days.

I had another MRI done which showed more Leisions - again in the periventricular region, more pronounced in the parietal region (thats what my discharge note says). Spinal MRI was clear. Bloods clear ( a little low on potassium) I also had a Lumbar Puncture done, which shows clear so far - proteins at 0.32, WBC at 1 Glucose at 3.1. I’m just awaiting the O-Band results.

The neurologist has said it could possibly be MS. She is reluctant to say its a Mini Stroke or TIA due to me age - I’m 26. To be honest, I didn’t know anything about MS or what it was. But after reading, am I right in thinking most people diganosed with MS have raised proteins in their CSF?

Today, I think it’s all come to a head and I’ve had a complete melt down. Usually I run around at the speed of light. I have an extremely successful (but stressful) job am fit and healthy and now suddenly I feel so, so low and lost. My body feels like it won’t work. Everything seems heavy and slow. My face is continuously ‘burning’ and my arm has a tremor. I also feel like my whole body is shaking internally…mad I know.

On the 10th Oct I see my neurologist again and I hope to get a diagnosis or at least the all clear. But I’m scared to say, things seem to be getting worse.

I just cannot accept this could be MS. I still think is anxiety or a TIA.

I don’t really know what I’m looking for or even asking…but I guess I just wanted to know what other peoples opinions were?

Thank you x

2

Hello, and welcome to the site

I hope you will forgive me for being blunt, but there is no way that this is anxiety - anxiety does not cause brain lesions. However, whether it’s MS or TIA, it really is not the end of the world. I know you might struggle to believe that at the moment, but it is the truth: neither are something that we would ever choose, but it is still possible to live a very full, rewarding life with either.

I don’t know as much about TIA as I do about MS, but if it is MS that you have and this attack follows the norm, things generally get worse until they peak and then they slowly get better. It’s not necessary to wait to see if things are going to get better before asking for help though - if you are struggling with any of your current symptoms, make sure and ask for meds to help (e.g. a neuropathic painkiller will help to get rid of that burning).

If this is MS, it is still early days after the latest attack started, so please forgive yourself for not feeling like your normal self. Take it one day at a time. Rest, delegate, ignore the housework, be kind to yourself. Hopefully you’ll see the light at the end of the tunnel soon.

And, fwiw, internal shaking is not mad - an awful lot of us know exactly what you mean!

Finally, as far as the test results go, I’m afraid there is no test that is 100% positive or negative for MS so try not to read too much into anything.

Hang in there.

Karen x

3

Hi Karen,

Thank you so much for your reply. Feeling a tad alone at the moment, so its nice and comforting to read that i’m not going completely mad!

I understand and take on board what you are saying. I just can’t help feeling I like maybe I’m a hypochondriac - I go to pick up the phone most days to book an appointment to see my GP because I feel I need help, but then I stop and think what will I say ’ Hi, I have a tingling, buring pins and needles and my head is on fire’ ??!! When I was discharged from hospital I was prescribed gabapentin, but told to take it only if ‘desperate’. I am not sure what I constitue as desperate, but I’m recluctant to take anything until I get a diagnosis. Does that make me sound stupid?!

I’ve never been a ‘poorly’ person and I tend to have been the kind of person that says “if it’s still there next week, I will go to the doctor” then never do. I know it’s not right.

Forgive me, this is all very new to me and I’ve been living in my own little world the last couple of months and perhaps in a little denial about it - but the more I am reading others posts, the more I am thinking “oh my god, that person is me!” But then on the other hand, and as you say, I’m trying to not read into anything too much.

I just didn’t think MS just appears ‘overnight’ - from what Ive been reading, people can suffer for many years before finally getting a diagnosis, where with me, things seem to have happened all within the last few months, which is why I just cannot get my head around the Neurologist saying it is possibly MS. It’s all very confusing…

Sorry, I realise I must come across as frustrating.

Thanks again for your post, I really appreciate it xx

4

Hi Karen,

Thank you so much for your reply. Feeling a tad alone at the moment, so its nice and comforting to read that i’m not going completely mad!

I understand and take on board what you are saying. I just can’t help feeling I like maybe I’m a hypochondriac - I go to pick up the phone most days to book an appointment to see my GP because I feel I need help, but then I stop and think what will I say ’ Hi, I have a tingling, buring pins and needles and my head is on fire’ ??!! When I was discharged from hospital I was prescribed gabapentin, but told to take it only if ‘desperate’. I am not sure what I constitue as desperate, but I’m recluctant to take anything until I get a diagnosis. Does that make me sound stupid?!

I’ve never been a ‘poorly’ person and I tend to have been the kind of person that says “if it’s still there next week, I will go to the doctor” then never do. I know it’s not right.

Forgive me, this is all very new to me and I’ve been living in my own little world the last couple of months and perhaps in a little denial about it - but the more I am reading others posts, the more I am thinking “oh my god, that person is me!” But then on the other hand, and as you say, I’m trying to not read into anything too much.

I just didn’t think MS just appears ‘overnight’ - from what Ive been reading, people can suffer for many years before finally getting a diagnosis, where with me, things seem to have happened all within the last few months, which is why I just cannot get my head around the Neurologist saying it is possibly MS. It’s all very confusing…

Sorry, I realise I must come across as frustrating.

Thanks again for your post, I really appreciate it xx

5

There’s probably only one thing that is consistently true about MS: it is massively variable! So some people can look back after they are diagnosed and realise that they’ve been having symptoms for years, but others may have had none at all. Funnily enough, I was talking to some friends about it earlier today. One person’s first symptom came a few years before his diagnosis, one had nothing before it all kicked off and my first sign came 13 years before the attack that led to my diagnosis. That variety is pretty typical in all things MS.

I think that advice about gabapentin wasn’t terribly helpful. These are not meds that you take like paracetamol - you need to take them regularly for them to work properly. Think of them as preventative rather than curative. Also, they often cause side effects (e.g. dizziness) which only wear off after a couple of weeks of regular use. Taking them occasionally would probably mean never getting over the side effects, which is pretty pointless! I can understand your reluctance to take something before you know for sure what’s wrong, but if those symptoms are really getting to you, then it may well make your life an awful lot easier. (It’s what your GP would tell you if you picked that phone up!)

Incidentally, I know exactly what you mean by being the kind of person who waits and sees before calling the doctor: I did exactly that for my first attack all those years ago and it took me a week to go when I had the one 13 years later when my body had gone nuts :slight_smile:

Kx

6

Hi Karen,

Thanks for the reply.

Re the gabapentin, I stupidly didn’t put the whole conversation - he basically said to only take if desperate due to side effects potentially masking the situation or aggrevating it until I see the neuro again in Oct. So on that basis, I kind of thought, well, I won’t take them until I know for sure I should or have to. To me, it seems a little aimless he even prescribed them…

But, I think you’re right - I need to pick up the phone and see my GP.

Your advice is brilliant - thank you xx