Hate the wait

A brief history: in April 2019 my hands started going ‘fizzy’. I waited a few weeks but t didn’t stop so I booked in with my GP. Of course I googled the symptoms thinking it may be connected with my diabetes and MS also cropped up. Out of curiosity, I looked at the symptoms and discovered that I had or have had most of them. Now my doc knows me well enough to know that I do not jump to worst case scenarios and that I was aware that probably had a collection of unrelated symptoms, and he suggested that lightning was unlikely to strike for a third time (I’ve survived breast cancer for 15 years rather than the 5 years expected, and had a heart attack, where my heart stopped while they were putting the stent in. I’ve also had cluster headaches for 30 years and type 2 diabetes). I simply raised an eyebrow and he referred to neuro. I had to chase this up after 6 months, only to find they had lost some referrals and thank you for ringing here’s an appointment for November! I went through a full examination and the consultant said she was positive I didn’t have MS, but referred me for head & spine scan anyway.

So I had the scan on December 29th 2019 - and got the results at the end of June 2020! They’d found multiple lesions and a cyst near my pituitary gland. She diagnosed Inflammatory Demyelination and said I should have a lumbar puncture. This was done on November 24th and I am still waiting for results.

It feels like I’ve had to chase at every stage and it’s really starting to get me worked up and worried. I know it has been a difficult year for everyone (I should do - I’ve lost both my parents, my mother-in-law and my brother-in-law in 5 months, none of them to covid) and NHS is stretched thin, but it’s been 21 months and all I want is Yes or No!

Sorry for the long post and I’m not even sure what I’m asking, but putting it all down has helped.


ADD - I’ve also now developed an internal tremor/shake and don’t know if it’s connected.

Hi Heather

Oh damn that bloody Covid! It has meant that a shed load of people have had to wait.

Will you be seeing a MS specialist? If so, you will probably be introduced to a specialist nurse.

Also if it is MS you will be given options as to DMDs so it’s worth looking them up because you will be asked to make a choice right then.

Stress, of which you’ve had more than your fair share, makes everything worse.

That internal tremor is a very strange feeling, like a lift/elevator going up and down inside you.

The results of your Lumbar Puncture should be in very soon, if not already.

Have you tried to contact the receptionist at the hospital where it was performed? Your GP can also do this.

Good luck and I hope the outcome is good.

Carole x

As they have been abysmally slow in getting results to you, I suggest you contact the Patient Advice and Liaison Service at the hospital you attend, to help put pressure on them to get your results and a proper follow-up expedited. Clearly the neurology department is dysfunctional - that is why I suggest going through PALS.

I actually have my heart/diabetes review tomorrow, so have to go to the surgery for a blood test tomorrow, so will ask again if they’ve had anything through. If not, thanks for the PALS suggestion. I’ll give that a go.