so far ive been diagnosed with ms, my legs are in pain alot of the time and i now need crutches to help me walk any where, my dr tells me there is nothing i can take to help me when i keep having flare ups, my neurologist tells me to go back in 12 months to see him as i look ok and i dont need a ms nurse or any help, i went to the local disabilities centre to get help and was told in so many words by a stuck up girl that im lying about having ms and that i needed to convince her i was telling her the truth about who i thought told me i had ms, she wanted the dates of all scans and lumbar puncture i had, and why i thought i had ms in the first place, i went there to get help with getting some crutches till i could buy some of my own, she told me yes they can help me but she won’t as i don’t look that bad, i told her ive collapsed 4 times because the weakness and pain in my legs have got that bad and she just looked at me like i was lying still, my local social services tell me they don’t help with my kind of thing and to go see the cab instead, im struggling with everything at the moment and not getting help from anyone, i just keep getting excuses or stupid people accusing me of lying about having ms, the fact that i can prove with scan results, neurologist letters and confirmation letters don’t seem to make any diference at all, its now getting to the point that i can’t get help and im now to scared to get help or ask for help as im too scared about being accused of lying or them telling me they don’t help with my kind of thing, ive had more than enough of being shoved around and really needing help but cant get it any where
Hello Vicki, I really do feel for you it is an awful thing when people don’t believe what you say, I know I’ve been in the self same position. What I find hard to understand is why your gp won’t give you any pain killlers as you and he have the letters from the neuro stating you have got ms. I would be inclined to take your letters with you down to the gp and show him and say please please give me something for the pain. There are so many different drugs out there that he could prescribe. You could always give your neuro’s secretary a ring and tell her your present situation. You should at least see a physio. Don’t give up you have proof that your neuro says you have ms. Good luck and take care.
Janet
x
I am shocked to see your post. Disgusted you have been treated so badly. Advice. Go back to your gp. If you are not happy with his response ask to see another gp in the practice. If you still get nowhere ask to see the practice manager. Complain that you are not getting the help you need. If you hit a brick wall write to your mp. Ring your Neuro up speak to his secretary ask to see him ASAP and demand appointment. When you see him ask for referral to ms nurse. Ring ms nurse direct and explain your need for pain management. I know you are feeling rotten anyway but just imagine how much fight you would have if his was happening to someone you love… You need some support. It is shameful you are not being offered it. Good luck. Xxxxx
I can’t believe how badly you’ve been treated. These people must be idiots if they are ignoring the proof of a neuro’s letter. As Janet says, your GP ought to help you with meds. A neuropathic painkiller like amytriptiline or Gabapentin should help with your legs. There are lots of people who can help and the neuro should have given you access to an MS nurse. Needless to say we are all happy to listen and help where we can. I hope you can get something to help you soon. Keep in touch. Teresa xx
Hi Vickie
Your Neuro’s secretary - just like Janet said. Also …
Ring the MS Nurses at the hospital where your Neuro is based. They will either act on their own, or it is not a well run department.
Ring PALS at the same hospital.
Consider changing your GP - provided there is an alternative surgery locally. You have an absolute right to do this.
Ring PALS at the PCT that covers your surgery unless you have only the one surgery available.
So, there is quite a lot that you can do. And there is more …
If you have only the one surgery available, you can have a look round the local hospitals on the internet and see if another one can offer MS services - then ask your GP to refer you to a Neuro at that hospital.
Geoff
im on gabapentin and naproxen for my headaches and imigran for migraines, but the gabapentin and naproxen arent doing much any more, the dr tells me he cant put the dose up any more, im on 100mg of one and 250mg of the other both 3 times a day, its so stupid how when you get something like this, the people who are supposed to be there to give you help are quite happy to bounce you around with excuses why they cant help, ive never been told what ms actually is or what it does or not to worry, ive basically had to read up from books and the internet to try and get answers, i normally wont ask for help, ill do everything myself, but even i know from the last few months i need help, so i ask for it and i get idiots. looks like the neuro’s secretary will be getting a call in the morning so i can atleast get a ms nurse to help, thanks alot for your reply’s, atleast i don’t feel like people are taking the mickey and they do understand
If the 100mg 3 X daily is Gabapentin, then a dosage three times that would not be out of the way - but I think that a Neuro would have to prescribe this (or at least ask a GP to do it).
Geoff
ok thankyou very much, looks like its time 4 me to go to bed as my cat is now screaming at me and trying to get on the keyboard lol, so ill keep everyone updated on the next lot of excuses i get
Hi Vicki.
I to can relate to most of the comments.Good advice from Geoff call your PCT they will tell you the best way to complain I am also having issues with my local surgery (I wont bore you with my story!!)
You are your own expert on MS so dont listen to them! The NHS is appalling I was not even told of my MS by my consultant!
Keep your chin up.
Chat soon Debbie x
I know how you feel, I don’t have a neurologist any more, he has discharged me because he can’t do anything for me. I bought my own wheelchair, and walking sticks, then my gp tells me the nhs would have provided them! I don’t have an ms nurse, I don’t have any help unless I pay for it. However, none of that helps you. I did eventually get crutches, but only after a particularly nasty fall. My gp referred me to the community physio and community occupational therapist, so I got crutches and a couple of grab rails at the door, and a perching stool. As your gp knows you have ms ask to be referred to community phsyio and OT, lay it on thick (although you shouldn’t have to) and see if you can at least get some walking/mobility aids.
xx
Oh this makes my blood boil. How dare anyone say you are lying…and why should you have to prove it to certain folk anyway!
What health authority are you in? it sounds like a terrible one to me.
You`ve had some good advice here, so I hope things improve…they cant get any worse, by the sound it it.
luv Pollx
well heres a update…called the neuro’s office this morning and told his secretary everything n she said she will put it down in his book and that someone will call me back IF they have anyone available, at 7:48pm last nite i had a call from the council with a woman who had a really bad attitude who wouldnt let me take the time i need to answer her questions, she wanted to know what debt i had n how much, that when i get put on universal credit next year i wont get anything for the firts month and that the council WILL EXPECT there rent and council tax to get paid in full during that time, she wanted to know what savings i had and as im on income based esa that she is expecting me to get a job to pay the rent that they want, i told her i have multiple sclerosis, emotionally unstable personality disorder, severe deppression and ibs aswell and that at the moment my deppression, personality disorder and ms is out of control till i get new tablets and help to get me settled down enough, i then got the arsey sarcastis…i take that as a no to you getting a job and working then…by the time she finished with me i felt lower than a rat in a sewer and a right scrounger, im sick of people making me feel like this, if i could work i would be out there everyday ready and willing, but at the moment i cant, so that classes me as a lazy scrounger who wants money for nothing. i really dont know what the point is anymore, i dont ask for these health probs but im trying to do the best i can with what ive got, im a part time carer for mum and dad as they are both disabled, most days im that tired or my legs hurt that bad that i need to rest but i cant coz ive got other responsibilities, and some stuck up little with talks to me like im worthless because i cant work at the moment, i called the council office this morning to complain and they said they will call me back, but as normal no one has