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Complaining to the top!! Awful treatment!

PLEASE can somebody tell me WHY do these Neuroligists and Dr’s get away with treating people SO badly…What can be done about it and can the MS society get involved to add some weight behind the numerous stories here on this forum!!

In my own case I am complaining to the Neuro dept and the patients advocate formally but that is NOT enough!!..Any suggestions?

Dee x

Hi Dee,

Ok by the tone of your writing tell us all whats happened.

As for complaining it wont get no where, I had someone give me a LP told she done it loads of time but had 2 others watching, when she asked have i steralised his back enoigh it didnt fill me with confidence, then the 35 mins turned into nearly an hour as she made mistakes had to re sterilise things because she would open a pack with sterilised gloves then touch the needle, my wife was horrified watching and she hitnerves a good few times before spilling my fluid everywhere.

for my second LP 3 weeks later the woman supervising her did it, only when she supervised the first time she kept going out on the phone and the woman doing it kept calling for her! Worrying really. Anyway getting back to the subject, My nuro started off great but then when they did all the tests was soon to dismiss me, she is really good though and I will be seeing her aain and im worried she will dismiss me but as Rizzo (karen) pointed out to me, she was really conserned inicialy so i may be worrying for no reason.

Some doctors and Nuros treat people like rubbish because we are all just cases and numbers, you need to find someone who cares and wonts to help, with increases in people faking it jepordises things for genuinely ill people.

Tell me your story i am well interested!!

HAve a hug and ill look forward to your reply

Hi Tom,

Thanks for your response…This process is such a saga!!

My point is…complaining should get us somewhere- these people are providing a service and we are service users. I work in the NHS and would not treat patients in this way…

My story like many others(going to put this in points Tom so I keep my ranting brief :0) )…

August… first started symptoms , went to GP- referred to Neuro

Not given anything for the pain or my symptoms!

December - symptoms worse- eventually had MRI which showed 2 lesions -

Saw Neuro Dr who did not give any advice, told me I probably had CSI and did not explain what next - no pain killers ‘Lumbar puncture’ for the beginning of January

January - I e-mailed Neuro secretary to ask about pain killers and advice- she did not get back to me . Spent Xmas in pain and unwell/exhausted and off work. When I went to the nurse at GP practise she was really annoyed I had not heard anything and contacted the secretary who said I was not on the list for a lumbar puncture!! The Consultant had not done the form!!

I was eventually driven to contact the ‘patients advocate’ …he chased my appointment.

Feb- GP told me looks like CIS(no protein in CS fluid which is good news)…still waiting for follow up appointment though was told it was in the post!!

I am back to work next week- still got symptoms- was eventually given neuropathic painkillers which gave me horrendous nightmares so now changed.

Still waiting appointment- no communication - being ignored - still with symptoms - lack of guidance of what I should do to help prevent this developing into another attack and an eventual diagnosis of MS.

So many stories like this is NOT acceptable…

Ranting Dee x

Wow your right that is a micky take.

I went to the doctors they sent a letter to the nuro, I had to wait months but then I went back to the doctors on this time my wife had to get me a wheel chair to take me as I couldnt walk, he admittedmed me.

I was in for a week, had MRI found a lesion had Lumbar puncture whent wrong. Increased lynthicites.

Got tolds by nuro, fuzzy area on scan, then someone else said lesion then i asked and she said a small lesion, why she couldnt have said that to start with it beyond me.

Then month later i was admitted for 2 weeks, more scans, my spine scan was dont twice as i had involentry twitching the were both blury but was told it was readable whatever that means.

then my 3 month appointment turned into 9 months as this was the soonest which I have not reduced to the 14th of feb.

I work from home the wife and I run our own business but its a struggle to get motivated, I still have to work to earn money, I dont get sick pay, and any time off really does take its toll.

Mt feeling is the nuros dont like diagnosing MS or ME and as their is not definitive test poor people like us have to suffer until we are text book. They told me its unlikely to be MS as I only have 1 lesion, but the Macdonal criteria says 2 lesions or 1 lesion with 2 episodes well I would day for 8 months I only go tback to 70% health for at leasr 3 weeks so I would say something is up.

It feels like we are constantly pushed aside as they like to wait to see what happens. We the last 2 weeks, it seems anything close up gets blurry but it everything driving makes me feel sick I have to rest but it doesnt help. I was given pills to try but nothing worked but I will utilise my next appointment to really pin her down to what they plan on doing so I know for sure.

I really do feel for you, like I am sure 1000s of others do. we are not text book, they dont like diagnosing where as in america they would have stsrted treating you for MS almost immediately. This sucks

Your experience is very debilitating Tom…I just don’t know why the professionals are waiting for severity before they treat - I have a suspicion it is due to cost but their lack of empathy and poor communication is just so intolerable on top of everything.

Make sure you are getting enough rest - I do try to exercise but today I am watching trash TV and eating!!

Warmest thoughts to you and all on the forum

Dee x

Thanks Dee,

Your right and I dont know why either, I dont know if it is down to cost, If we think about the MRI machines being used 24/7 anyway and treatment is a mixture of pills that I would have to pay for anyway.

I just think that some people dont have the empathy or compassion or the feeling of what we go through. Live a day in our shoes and then tell me what ou would treat yourself with!

Yes…here’s to a clear diagnosis, plan of care … I do think that we are ALL vulnerable and have a breaking point so …no one is invincible …so compassion is the way to go…

Hi I voiced my disappointment in not getting a diagnosis after 14 years of tests and examinations.

I felt I was treated badly due to speaking out.

I decided not to take it further as i cant cope with the hassle.

luv Pollx