MS Society UK | Forum

Undiagnosed but getting worried…

Hi all!

Haven’t posted on here before and new to all this. I have found it comforting reading others so thought I’d give it a go.

So since last July I’ve been having strange neuro like symptoms. I am currently waiting for my neurologist appointment but understand this could take some time! I wonder is anyone knows how much this is privately (roughly)?

I have pins and needles constantly it was in both hands and feet but mainly now feet and lower legs. But I also get them in a patch on my back throughout the day. I had a period of feeling extremely twitchy and thought I had a bit of a tremor in my left hand this has since stopped. But recently I have a tight right foot and calf muscle down one side.
I also have a weird lump feeling in my throat- GP thinks anxiety and Globus sensation but I’m unsure.

My mind sometimes says it will be ok other times I feel overwhelmed especially looking after an energetic 2year old.

I guess i was wondering is it common for sensory symptoms to remain for this amount of time - 6months+ They are less but definitely still there!
Will this stiffness get progressively worse or (fingers crossed) can it go back to normal?
I know no one can give answers as everyone experiences are so different but just useful to know some thoughts.

Thank you for the support
Lucy

It could be many things. One simple thing it could be is magnesium deficiency, which is very common, and easy to check by taking magnesium supplements. You may want to run that past your GP if you are on any meds. If you do think about trying them, avoid the very cheap Magnesium oxide ones as they are very poorly absorbed and generally just give loose stools! Magnesium citrate is better absorbed and relatively cheap. There are others too that are well-absorbed. Some use magnesium ‘oil’ - not actually an oil but it does feel oily. About 1% (including me) get a very burning, stinging sensation from the oil though, so not suitable for all. Others swear by it. It helps some with stiffness from MS.

Thank you for taking the time to reply. Will give magnesium a go :+1:t3:

I think private appointments are in the £150 - £200 range. Because of the long waits for NHS appointments there are now quite long waits for private appointments these days, though not as long as the NHS waits.

1 Like

hi there, i had to go down the private route to get a diagnosis after having everything else ruled out firstly then having a mri which was inconclusive,all this took over 12 months by the way, so i went private for a second opinion which cost £150 for the first appointment when he then suggested another ,better quality private mri, £800, then follow up appointment £100 so £1050 altogether, but then i was in the system so got to see the same consultant on nhs within a month and got onto dmt’s not log after.
i feel as if i hadnt gone private i might still be in the undiagnosed situation you find yourself in as i feel that the nhs seems to deal with people on a who shouts loudest first basis and not who really needs treating first basis.
in your situation time is really the enemy as if you get a positive diagnosis,which nobody wants, you will be able to go on dmt’s which will slow down the progression and if your symtoms get worse quickly as mine did which stopped me working within 18 months a diagnosis will help when applying for benefits that you are entitled to. hope this helps.

Hi
I think your symptoms are nearly almost identical to mine.
All started July same time as yours, fingers and feet tingling but also I noticed I had a very slight wobbly leg feel in the early months.
After 2 months the muscle twitching started ( legs arms body face etc) and is still happening every day.
After the 3 month point the tingling started spreading up to my waist.
The last couple of months the numbness that started in the feet has increased along with muscle stiffness spreading up now onto thighs and hip area.
Every week it seems to be getting worse.
The last 3 weeks has definitely seen a decline in my standing and walking ability. Getting really worried now.
The only improvement I can say has been the hands, tingling has nearly gone now.
I’ve seen 4 neurologists over the last few months had various tests. I’ve not been offered any treatment. Each one of then having their own guess as what it could be.

Andrew

Thank you for all the info and costing on going private. I think that will be my next step. In the system for a private neuro appointment but I can’t see that happening anytime soon the nhs is so overstretched.

Yes symptoms do seem to be very similar! Pins and needles got better in my hands first too and they seem to be reducing in my feet but now have this stiffness and twitching / buzzing mainly in right leg. It’s so difficult to describe to other people. Going to try and keep a symptom diary so when I do get an appointment I have it written down.
Do you mind me asking what the neurologists have suggested the cause could be? have you had a MRI or not at that stage?

I hope we both get some answers soon although that slightly terrifies me too.

Take care
Lucy

I’ve had a couple of MRIs…nothing showing to cause my symptoms.
I’ve started a thread on the symptoms section have a look at that.
They seem to think it may be a reaction to the Astrazeneca vaccine as my symptoms started 2 weeks after 2nd dose. Coincidence?? Who knows

1 Like