I’m not surprised you’re feeling a bit miffed at the long journey to diagnosis. It is sadly still far too common that people are not having their symptoms taken seriously by their doctors. As a result it’s typical to feel like you’re exaggerating, or not believed, or that the doctor thinks it’s all in your head.
Bizarrely, for me it was the other way round. In 1997, my GP (who I hardly knew, having just moved), heard me say ‘my ring fingers gone numb’ and referred me straight away to a neurologist.
The neurologist took it seriously too (by which time the numbness had spread to my legs). He arranged for tests as an in-patient including MRI, LP and VEP. All these were positive but a doctor came and told me ‘you haven’t got MS’ (the fibbing liar!). It was common then, there were no DMDs. They gave me a 3 day course of IV steroids, booked me a repeat appointment with the neurologist and left me feeling like a medical mystery.
Meanwhile a letter was sent to my GP saying all the tests had been positive (apart from a load of blood tests, including a test for antibodies to Epstein-Barr) and that it indicated a demyelinating disease but that ‘we won’t mention MS unless she does’. I knew nothing then, including what I was being tested for (there was no Dr Google, in fact the internet may have existed, but it was a closed book to me).
I found out it was MS 5 years later, following quite a lot of relapses, that I still thought were just random semi imaginary things. But then DMDs had at last become available on the NHS.
For you and many others these days, you’ve been down a long route, sent to all the different specialists and only relatively recently even suspected MS was possible.
To me, a neurologist telling you you have
Seems to me to indicate quite strongly that MS is the likely diagnosis.
When the neurologist said the symptoms you’ve experienced are the result of damage to the myelin sheath again that indicates MS.
MS relapses occur because there’s inflammation in your central nervous system (ie brain an spine). The ‘fighter cells’ of the immune system see the myelin which normally protects the nerves, as an ‘enemy attacker’ and cause damage to that myelin.
It’s a bit like electrical wiring in your house attacked by mice who think the insulation covering is cheese and start snacking on it. The wires (nerves) underneath the insulation (myelin) are damaged and there are weird signals running through the wires (nerves).
This amateur means of explaining what seems to be happening to you is my understanding that the lumbar puncture will probably prove positive and you will be diagnosed with MS.
What’s important for the lumbar puncture is that you a) stay laying down for as long as possible after the test, and b) drink something with plenty of caffeine and sugar in it (eg full strength fat Coke). Both laying down and caffeine (take a bendy straw with you) should help you avoid a killer headache.
Have a look at McDonald criteria | MS Trust This will tell you what criteria are used to diagnose MS. Also Lumbar puncture | MS Trust This will help you prepare for the LP.
With regard to your balance problems, I don’t think you need wait for diagnosis if you need help when walking. I remember almost feeling like I needed someone to give me ‘permission’ to use a stick or a crutch (which I found much more helpful than a stick). You don’t need to wait until someone, eg a nurse, doctor or physiotherapist tells you to use one. If you find a walking stick shop you could be measured for the right height. Don’t wait for diagnosis if you need it now.
Best of luck.