Forum

advise on next steps please

Hello all.

I used to visit and post on here often, when it was the ‘old’ version. I have not posted since the change but have often popped in to read posts and have found comfort from reading them. It is nice to see other old users (Karen, Poll, Debbie) ect and newer ones too.

I have come back as still in Limbo and finding things really difficult to cope with. I will try to cut a VERY long story short…starts about three years ago with what I thought was a back injury. Very thight heavy pain in lower back and tummy like a TIGHT belt legs heavy like walking through treacle! legs and bum numb and cold like sitting on a cold brick wall. After numurous GP visits one identifed neuological problems, blance, gait, limb weakness, and right foot drop and tremous. Saw a neuro constultant and had MRI brain which showed several leasions in the “right places for MS” spinal images were unclear due to metal work (rod for scoliosis).

He said it was MS but wanted an LP to be sure, he did say if this was clear then he would still be sure it was MS! Sadly he left before results came through and I now see a new reg, who is not so keen to give a dx. She said I defanitly have a neurological condition, but there is little point in keep expolring as there is no treatment for MS or other neuro conditions! She is happy to treat my symptoms: urinary retention, neuro pains= amytrptalin Spasms = diazipam this is mainly for the lovely named MS hug wich I get frequanlty, She is the one who identifed what the pain was, yet still what diagnosis me…no wounder I am confused!

I have also loss of field vision and depth perception and had to stop driving. And I have odd sensations such as wet patches, burning and pins and needles alsorts of odd stuff.

So now I have rattled on and given a brief discription of some of the symptoms my questions is do I take her approach and watch and wait, treat symptoms as they arise or do I seek a second oppinion?

Phewwww Thank you for reading!!!

PPx

Hi PP :slight_smile: Definitely get a second opinion - not trying to diagnose is a nonsense and against NICE guidelines. There may be no cure for MS, but there are drugs that can make a significant difference to its course and lots of new drugs in the pipeline too. But a prerequisite for getting them is having a diagnosis! A diagnosis is also important for benefits, insurance, dealing with employers and probably loads of other things! If you use the “Near me” function on here (look along the white boxes towards the top of the page), you will be able to find an MS specialist in your area. Good luck! Karen x

Thank you Karen!

I thought that is what you would say! But nice to hear it. I do want to know what is wrong, I think that it is important to have a formal dx. I know the process in hardly ever straight forward. I will keep searching the near me bit and find a nice doc near me.

Welcome back btw did miss reading your advice!

Pp x

Hi ya Polly, welcome back

I’d definitely get a second opinion!!!

It’s your neuro’s job to find out what the problem is!

Even though there’s no cure for ms at the moment new treatments are popping up all the time. There’s loads of research going on and in my opinion the more they do, the better chance we have of finding a cure!

Aside from anything else, if you were to gain a diagnosis of ms (for example) then you’ll have better access to current treatments and services.

You deserve to know what’s wrong to be able to move forward.

Good luck, let us know how you get on!

Debbie xx

Hiya Debs

Thank you. Thants what I want, to know why I feel the way I do. It would also give the oppertunity to get better access to advice and information that is relevant.

Ppx

Hi Polly

It’s a sad thing especially in this day and age but sometimes we have to ‘push’ to get the help that we need, so don’t be afraid of seeking a second opinion.

It’s not aceptable to be told “there’s little point in keep exploring because there is no treatment for ms”!!

This is about you and no one else so stick to your guns!

Debbie xx

How bizarre. Has the registrar been living half way up a tree in Wales for the past 20 years, or something?

Definitely a second opinion needed!

Alison

x

Hi Polly

these neuro’s are so reluctant to diagnose you with MS. I don’t know whether it’s they’re scared of getting it wrong, are worried you’ll give up when it might be an isolated episode or whether they think it’s better steering clear of a diagnosis if you’ve got mild symptoms as it can affect your mortgage etc Isn’t it our choice to make the decision though - I’d much prefer the neuro to lay cards on the table and say this is the situation we can pursue and diagnosis or leave what would you like. My neuro initally said I can’t say you do or don’t have MS as I had a few more white spots than I should for my age and now has said I’ve had a mild episode of inflammation in my spine (roll eyes) and that I need to forget about it and just get on with it!

Not sure if giving you all the medications might actually mask if you have a relapse i this is MS but the others might be able to give you more advice than me on that - saying that at least you’re being offered solutions. My neuro said well do you want to be cathetirisedalmsot in a scare tactic way!

Get a copy of all your notes and seek a second opinion. You can’t cure MS but you certainly can have drugs to try and delay it’s progression. And also what about peace of mind - yes MS is a scary diagnosis but there are far worse things and at least you know there is a reason why all this is happening to you.

Best of luck

Reemz

X

LMAO! I do love your way of cutting to the chase Alison

Kx

Alison you made me giggle!! I had a vision of her up a tree! You are so right though, neuros need to keep up with the new McDonald critira, and NICE guidlines ect but they seem reluctant to change or improve practice.

Reemz you are right I am very reluctant to take any meds as, it may mask relapse or even make things worse if dx is not known! and as you say if it is MS I know there are drugs to delay progression, I can’t help thinking sometimes a diagnosis is slow as it may save money on these type of treatments. I am going to try and get copies of my notes and copies of my scans on disc.

I feel that this forum is a great support and full of well informed people. Thank you all for your input.

Ppx

Just looked!!! No neuros half way up my trees!!! xxjenxxx

You sure Kizzydane? I am sure most of them not on the same planet as we are! LoL

Ppx