Scared Snowflake in Limboland

New diagnosis and before diagnosis
1

Hi

I’m a 40 year old Husband & Father to 4 little girls and my story starts on 26th July 2013.

I’d gone to the pictures to watch Despicable me 2 with my wife, Eve & Daughters Kinsey (9), Nyah (6) & Willow (3). Dempsey (1) was too young (And loud) to make it through a whole film. Anyway, about half way through, Willow was a bit bored so I took her for a walk. I noticed my lower left leg felt numb but I just put it down to maybe sitting a bit awkwardly and thought nothing more of it.

As the weekend went by, this numbness spread to my right leg & left arm. After much worrying by Eve I rang NHS111 on the Sunday and told them of my symptoms. An ambulance was dispatched immediately. After many of the same tests by different Doctors, Nurses etc I was sent for a brain MRI on the Tuesday morning.

The MRI came back clear so I was sent for a spinal MRI about 6 weeks later. During this time I was referred to a Neurologist and had various blood tests.

My symptoms had worsened: Excruciating pain in both legs, a mixture of numbness & pain in my left arm, really noticeable tremors in both hands and problems remembering things, concentrating and stopping mid sentence because i just couldnt remember what i was talking about. These symptoms persist an I need the aid of either a stick or wheelchair to go anywhere outside of our home.

My GP asvised me that I will require further tests under the neurologist for demylination (a word I was not even aware of at the time). I have since become aware that many symptoms that I have do tie in with MS and I must admit I am scared of what my future and 16/10/13 (Appt with neurologist) hold.

It has also occured to me that on 5 separate occasions in the last few years There have been signs that something (whether it be MS or something else) was maybe not quite right. Ranging from debilitating pain/ weakness/ numbness in limbs, uncontrollable tremors in my hands, periods of extreme fatigue, temporoary blindness and a worsening brain function (I did originally put this down to advancing years)

I suppose i’m using this forum as a sort of needy sounding board to see if anyone else has had the same feelings swinging from uncertainty, fear, wondering if i’m just a massive hypochondriac thinking I really don’t want anything to be wrong with me but wanting to know that there is some reason for it. If anyone does feel like this it would be great just to know that i’m not alone.

Thanks for reading and sorry for the essay.

Keith.

2

Your not alone… I think the fear of the unknown is worse than the symptoms themselves, for me anyway.

3

Just Keith - you’re not alone and we don’t mind wordy essays. Have you tried the free Helpline here? 0808 800 8000

My symptoms aren’t anywhere near as dramatic as yours but it helped me make the decision to go and see my GP and the lady I spoke to was very kind and reassuring.

It sounds like you are in good hands and you have a neuro appointment really soon (some people wait absolutely ages!).

By the way, is Despicable Me 2 any good? My hubby, almost 5 year old daughter and myself loved the first one! Oh…great…now I have the theme tune stuck in my head “I’m havin’ a bad bad day, it’s about time that I get my way…” LOL

Here’s hoping you get some answers and a plan of action soon. In the meantime, feel free to express yourself on here as and when you need to.

4

Hi Keith

I had symptoms that I ignored, as there could have been another logical reason for them and I only went to see an osteopath as I had a fall… long story short - I’ve got likely ppms and I’m 43 (and that’s not supposed to frighten you, I’m keeping the story short!)

I think we do need to listen to our bodies more sometimes… I was still teaching fitness classes a month before any diagnosis as aerial stuff was still do-able even though my ability to walk was failing! Now I can’t believe I had such a “plough on” attitude about it.

Take care and write down the incidents/occasions you remember, it might be helpful later when you speak with a neuro. You caould had had relapses without realising it.

Good luck and don’t be frightened, MS is difficult at times but it isn’t life-threatening :wink:

Sonia x

5

Hi Keith, it is very unusual to get an MS dx with a clear brain scan. I was thinking more myelitis which is inflammation on the spine which can cause problems with legs tand arms. Although you do seem to be having problems neck up too which would make one suspect there were lesions on the brain - but a clear MRI has ruled that out. Have you got the spine MRI results back yet? I suspect if there is a lesion there then they will give you a lumbar puncture.

I myself have a clear brain MRI and one lesion was seen on cervical (neck) spinal cord. As the brain scan was clear they gave me a LP which was negative for MS markers. I did have a mild attack in 2008 then recovered but then months later weakness and spasticity developed very slowly. in one leg. I have no real concrete dx but radiation damage (from cancer treatment I had in 1990) has been mentioned.

Have you noticed any improvements in your symptoms?

Moyna xxx

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Thank you all for the kind responses.

Reikiblossom, Despicable Me 2 is even better than the first one. If you Google ‘Purple Minion’ that is just what our 1 year old is like most of the time.

Sonia, thank you for the tips, much appreciated.

Moyna, symptoms have remained since July really. Some days are better than others, so I just try to take it as it comes. How do you cope with the not knowing?

Hope you all have a good day. xxx