Forum

Frustrations with or against seeing your specialists without regard to Mental Health

Yes, as Neurologists go, many wth the Knowledge but not the nous, (and this has a lot to do with them not acknowledging or accepting that MS is a Mental state and not just a Physical one, as proven when a consultant has said to me there is no pain within MS) only just seemed to come around to the notion of these aspects, to the idea and fact that with Mental Health being an inextricable part of MS, or, indeed any other Neurological condition, or illness, or Disease as being a catalyst for Mental Health Problems?
They have, only until fairly recently come round to accepting and acknowldging
this aspect, proven, when a consultant in a Hospital setting, in answer to me mentioning I had MS, in response had said to me, ‘‘Oh, really, you look alright, I wouldnt have thought that’’, with me standing there holding my walking stick?
Yes, on the face of it, a resonble response, and they may not have been a Neurologist per say,but it just goes to show that the concept of Mental Health IS Still Not fully understood or appreciated, especially within the realms of MS?
Yes, I agree and witnessTomcats point of view and sentiment that when talking to my Neurologists, or their Ilk, I am left with the sense of wanting or needing more input, or a sense of just not being listened to, it being a big part of my frustrations, which, in themselves can and do act as a catalyst to create further Mental Health problems, a point in case?
sincerely, GW

When I went to see my “consultant” for the diagnosis back in 2010 the actual meeting took 1 min 49 seconds.
He anounced that I had primary progressive MS and book another appointment to see him in 1 year. I asked him what that actually means and he basically said 1 have 5 years and then would be in a wheelchair for the rest of my life.
What he did not say was that I had to basically inform the DVLA, my insurance company and many more.
Driving licence dropped to renew every year. Insurance jumped by nearly 25% and no support.
It would have been far better not to have gone to the doctor in the first place.

I think it’s a bit of a postcode lottery with regards to how much of an effect on mental health having MS has, and whether or not it is recognised.

I asked the question a couple of years ago, if there was a neuropsychologist or mental health specialist within the MS team and was told ‘No’. Basically if you want any help and support in that direction, you have to go find it yourself.

At that time, I was already under MH services, but they had no knowledge or understanding of MS, so there was this huge gap between physical and mental health, with no professionals to fill it who had experience of dealing with patients on both sides of the fence.

Parity between physical and mental health is still a long, long way off.

I had all mentioned when I got my RRMS diagnosis.

Licence wise I got a 3 year license.
Insurance wise I believe kacking up the price was disability discrimination. Could be wrong as we have different types of MS so don’t hold me to that. All I can say is my policy never changed I just got a thank you for letting them know. I knew beforehand that my premium wouldn’t increase. Can’t remember where I got that information from. May have been for the MS nurse, booklets, reading MS forums or online research.

Where I live everything is unco-ordinated.
i changed hospital to get a different consultant.
Had many more MRI’s + other tests but unfortunately the new consultant left before I coud get the results.
Hence went back to the original consultant but he said he could not get the results wecause the other hospital was part of a different NHS trust.
Lumbar punctures are not nice at the best of times but to then lose the results is just rubbing salt into the wounds.
Anyway it is nearly time to start renewing my license for another year.

Where I live it seems that there is no communication between the hospital / consultant and outside MS support. My wife had suspected breast cancer and she was given a huge amount of support and a large information pack with details of the cancer support organisations, free parking at the hospital rtc but with MS there is nothing given out and full parking charges apply.
MRI waiting time + scan easily eats up 4 hours or £12.00 a pop.

It comes as no surprise to me a consultant took under 2 mins to tell what he knew, maybe the sum total of it? But this just confirms my notion they do not have a clue as to the link with Mental Health, for if they did know or realise, the consultaion would have taken at least 3 mins?
Joking aside, if they took into account what it might mean to you to have your licence taken away, lose your liberty, independence and self worth, and these alone are enough to create the Anxieties, Stresses and Strains that cause MH issues?
And it is no good to hear that we all suffer those ASS situations and we all get issues because of it, as quite often heard, even by a consultant, when i have tried to highlight how bad I have been feeling because of the ASS situation, and get, well, we can all get problems because of it.
But they constantly fail to acknowledge or understand, that because of the ASS, a person with MS can suffer ten times as badly, and then they automatically want to refer you to a Psychiatrist for help. And all that these have in their arsenal or mindset are anti depressants or anti psychotic drugs, most of which can be dangerous, addictive and/or suicidal, with a plethera of side effects, and then they have to prescribe another drug to counter those side effects and to me counter intuitive to the notion of ‘do not take drugs’, especially when I know there is a much safer alternative out there?
My point is, if they knew, acknowledged or accepted that MH was in tow to MS, then there should be no need to refer you to a psychiatrist on or with something they should know about and then give assurances to put ones mind at rest without that referral?
By them not seeing the bigger picture they are heaping further anxieties upon you, making inferrence there is something else wrong with you other than MS?
So, in my opinion and experience, I have been left with the feeling I am dealing with the keepers of the ASS in this particular stable?

My gripe is with the DVLA. Yes they have to ensure that we are safe to drive but I always end up having to chase them up for the driving license forms.
Fill form in and send them off. Months later get usual letter and more forms, with different numbers, but asking the same questions. send off again then get a snotty letter back as I have not put the actual full date of diagnosis of MS.
Refer DVLA to my doctor to check my medical records and only the year is recorded. Ask DVLA how i can give the exact date, as it is not recorded in my records, then get another letter from DVLA, different form numbers, but same questions. Reply with photo copies of all forms sent to them over some 5 months now.
DVLA demand my doctor carry out a driving medical but my doctor does not do that. Get local surgery to write to me explaining they DO NOT do driving license medicals.
DVLA dig their feet in and insist my doctor does the medical. More letters and finally agree that my surgery (not my doctor) will carry out a DEMENTURE test and the DVLA will accept it.
Agreed DVLA have a job to do but 7 months, scores of letters and countless hours wasted to end up with a DEMENTURE test to renew my driving license for 1 year is absolutely pathetic.