I know exactly what you mean and I certainly don’t think that it is unusual amongst MSers. I do get a bit of a sneaking suspicion that (along with the wide range of cognitive problems) it doesn’t get flagged up as a priority issue problem. Whether this is because it is a complicated/difficult neurological issue that is also often bound up with other psychological issues (eg depression, MS “mourning” etc) or physical MS effects (eg fatigue, sensitivity to noise, sensory overload with too many voices coming at you etc) so it is put in the "too complicated" file or whether it is not mentioned too much because it is considered "scary" I don't know. I do know that my original medics tried to calm me down whenever I mentioned anything cognitive. Yes I am a bit of a panic-ferret and any loss off my mental capacity was an obvious major worry to me but I do feel that my original team were a bit condescending and "calm down dear" about the whole thing.
And, added to the MS issues, don’t forget that we may have other problems to throw into the mix that are not presents from the MS fairy (eg I am also VERY hard of hearing and have to wear 2 hearing aids. Poor hearing does also make me withdraw – especially with people who I don’t know very well – but my neurologist seems adamant that my hearing loss is my personal problem (inherited from my mum) and is over and above my MS.
In my case, I have difficulties with my speech – slurred speech (I often sound drunk), hesitant speech, loss of power in my voice, inability to locate the word I need, using wrong words etc. The effect of this on my life has been devastating to say the least.
I am a prosecuting lawyer and the majority of my job is appearing in Court. I can’t do that now because I am not coherent in Court. Magistrates have complained about me. Victims/witnesses have complained about me because they have thought I was drunk. Can you imagine how embarrassing that has been? I now completely office based and I am hoping to move to a different advisory role but if I can’t move to that role I am facing medical retirement.
Added to that, I used to be a semi-pro stand-up comedian with a strong line in dealing with hecklers. I can’t do that now so I have lost the serious hobby that I loved.
I am not mentioning this because I want anyone to feel sorry for me but to explain why, in addition to the “physical” results of MS, it has become so easy for me to become a depressive recluse. This is such a vicious spiral. I don’t go out and interact with people because of my problems. If I don’t go out and interact my skills become rusty and seem worse. The worse I get, the less I want to deal with people ……….. and so forth and so on.
I have been very lucky with my Neurologist and especially my MS nurse who is a real terrier when it comes to fighting my corner. I have been assessed by a Neuro Psychologist (which was interesting but scary when my IQ was assessed as having fallen by a significant amount in the year since my last catastrophic relapse) and I have been getting lots of practical support from a very good speech therapist.
It hasn’t been a solution but it has been a big help and I would suggest that everyone who has these issues raises them with their health professionals to get all the help that is out there.