All time low point feeling frustrated x

New diagnosis and before diagnosis
1

Hi guys,

please bare with me as I’m very new to all of this but just looking for a little light out there at the end of this very dark tunnel. I have not received a diagnosis of ms as yet, but getting a little upset and fed up of people saying I have it, everyone that is apart from my neurologist (she does not specialise in ms). Im now in the forth month after the symptoms really started to take effect. On a daily basis at present I have numbness and tingling in random parts of the body, along with spasms, stiffness and pain especially in the right side of the body. Im sooo tired all the time, and when I get over tired I sound like I’ve been drinking all night (don’t drink alcohol at all), to the point where my dentist even asked my mum yesterday if I was an alcoholic. My MRI, and lumbar came back normal and my neurologist is convinced I’ve a deep depression, which I know is not how I feel. Granted Im frustrated, and a little fed up now, I’ve gone from an abled bodied person (health visitor at that) to not being able to drive, walk far without support or even shop on my own. My GP thinks its ms, the nurses on the ward thought it was ms, my physio thinks its ms but my neurologist thinks im potty. I just want to get back to normal, get well, and live my life as full as I can, but without a diagnosis I cant receive any medication apart from gabapentin which isnt really helping. I have good days and bad days, and still believe it or not have a positive attitude. I was just wondering if I was alone in struggling t get t the bottom of feeling pants, or if anyone else had experienced any of this.

Sorry for ranting but at present it feels like no one understands.

Thankyou for listening xxx

2

Hello - poor poor you, how awful, it sounds so frustrating. I wrote something in the thread ‘Outcome of neuro appt yesterday’ re seeing specialist MS neurologist - in case that helps… Certainly different consultants will have different opinions, as you know from your work, and I certainly do . I so understand when you say no-one understands - I have realised however much people care unless they are experiencing the symptoms themselves it is very difficult to fully appreciate what you are going through. That does make things feel very isolating doesn’t it - only you can go through this unfortunately. I so hope you get a diagnosis and start to feel better - very best wishes Bea

3

Hi hun.

Yeh, i do know just how frustrated you feel.

I began with mobility problems (dropped foot and falls), 15 years ago.

I saw 14 neuros and had many tests…4 MRIs, 2 LPs, 2 EMGs, a VEP and oodles of blood tests. They all came back normal.

My symptoms were typical of PPMS, so it was highly suspected for a few years, then I got a 95% diagnosis of it and slotted myself into that quite well. Of course I had my wobbles, but kept fairly positive on the whole.

Then a different neuro jumped in with his size 12s and completley turned my life upside down, when he said I had a genetic condition called Hereditry Spastic Paraparesis!!!

Move on a couple of years and that was quoshed and MS was in the frame again. You couldnt make it up, could you?

Finally, last year MS was definitely ruled out and my tag is now;

spastic paraparesis/cause unknown.

Some of us may never know what is causing our problems and there ain`t a damn thing we can do about it, eh?

luv Pollx