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Unsure what to do - Not diagnosed

Hi Everyone

I haven’t posted on here for a while - I had decided I would try and put everything out of my mind and forget about it until my next appointment with neurologist (just in case I convince myself I have ms!)

But there’s only so much brushing off I can do and quite honestly I feel at a loss and don’t know what I should do. I am really hoping for some advice please.

My situation so far has been that symptoms started in Feb this year, referred to neurologist who put me for MRI scan and Nerve tests - nerve tests were normal and MRI showed a couple of lesions on brain. Lumbar/sacral mri some mild degeneration. My last letter from neurologist was telling me that he will be making a return appointment for me to see him and an apology for his waiting list - that was in October.

My recent symptoms started a couple of weeks ago, I had what felt like sciatic pain on right side of back/leg, then I started getting a painful hand/arm (also right side) mainly it’s my hand that hurts and more so when I squeeze either side of palm or if my hand is held. The shivery feelings and numbness in my leg and and prickly feet started up again too and this morning noticed it moved to left side of leg too and left sided face tingling?!

Is it even possible to be feeling all of this in such a short period of time? Or am I losing it? I don’t know what (if anything) I should be doing for help?

Apologies for long post

Thank you

Jen

I think it would be worth calling the neurologist’s secretary and explaining that you have this new stuff going on and trying to pin down an appointment. Also, it would be sensible to consult the GP for an opinion. For instance, if it feels like sciatica, it might just(!) be sciatica, or sciatica as well, or whatever. And the GP just might be able to help with flagging the urgency of your need for a neurology appointment. I’m sorry that your worries have raised their ugly head again. Only thing to do is to hand it over to the medics, I’m afraid. Alison

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Oh, and no - it doesn’t sound to me as if you are losing it! From my own experience, neurological things can do more than one trick at once, alas.

Alison

Thank you very much Alison for your advice.

i called my gp this morning who then went on to put me to hospital where they done a heap of blood tests and similar neurological tests like standing with eyes closed and stuff that I had when at first appointment with neurologist. They also wanted to do a lumbar puncture !! I don’t know what I expected today but a lp did not cross my mind and I totally freaked out about it and took so long trying to gear myself up they eventually made the decision to leave it for now and get in touch with the neurologist for me to be seen quicker and have a bit of time to prepare for it! I feel like a complete fool now I’m home but at the same time don’t think I could do it right now - going to have to give myself a firm talking to though for actually getting it done .

thanks again for your help xx

Poor you - what a shocker on the LP front. It took me a good couple of weeks to get myself psyched up for that one when it was my turn, and I would have had a kitten if they had tried to spring it on me! So don’t feel bad about stepping away from that vehicle; if you need an LP in due course, then you need one, but you can cross that bridge in good time if/when it comes to it, and with an opportunity to think things through first.

The good news is that they are clearly taking your case seriously. Let’s hope that translates into a consultation very soon, and some more progress.

Alison

Hi Jen, ahh I understand you freakin out at the unexpected mention of a Lumbar Puncture & want to assure you it isn’t anywhere as bad as I’d thought.

At my appt. I was worried & scared, but it was all fine. I didn’t feel the needle, or have a headache. The nurses explained each step. It wasn’t a nice experience but nothing as bad as my worried mind imagined.

Good luck

Hi Jen

If this helps the “in limbo” time before I got diagnosed was the worst for managing my symptoms.

It helped me to think regardless of my diagnosis my symptoms were never changing regardless of the

label. So when this dawned on me I think that really helped. Not sure if that makes sense.

When you have a symptom flare up then you need to rest. House work can wait. Looking yourself will really help

you feel better. I have treated myself to a cleaner which really helps me.

Take a friend to the LP and plan a reward for yourself afterwards as a treat.

I hope you get some answers and feel well soon xxx

Christmas is so stressful and really can flare up old symptoms