No treatment and no referral - what can I do?

Hi - I’m new to the MS Society, having been avoiding it for the last 15 years as I do denial REALLY well. But I think I need some help from people who may have been through similar stuff.

Here goes: I was diagnosed in 1998 in Swindon, where there was no neurologist at the time. I got diagnosis quickly as I was 10 wks pregnant and they put me through the MRI scanner there. As I couldn’t get much info from the doc I saw there, I opted for an abortion - I was pretty poorly and didn’t know what else to do. My husband had BUPA then, and I got an appt a few weeks later with a private neurologist, who confirmed diagnosis and expressed surprise at the abortion decision. Too late for regrets then, and I felt a lot better, so we got on with life. I went on a have a child (probably too soon … symptoms still bad and head all over the place …).

In 2000 we moved to Cambs. I am not generally too bad. I stopped working as I don’t have enough energy for everything, and my husband has worked like a nut ever sine to support us. Every now and then I have a relapse, usually after a virus or bug, and a temperature always brings more trouble. I went totally spastic one during a high temperature, which was very frightening - my husband was abroad, my son was 9 and terrified, and we had to get a friend to come round in the middle of the night and she spent fruitless hours on the phone to the out of hours docs who clearly had no idea what to do!

Anyway, my GP, though smiley and sympathetic, won’t refer me or offer any advie or treatment when I’m struggling. After the spastic episode when I was really wobbly for several months and asked if there was anything which could help, he said there weren’t any treatments for people like me and I just had to give it time. Not working for a living, I can do that, but if I had a job I most certainly would’ve either been fired or dropped dead by now!

My main symptoms are fatigue, tingling and numbness, and feelin like I’m walking on a boat at sea. I know I’ve not got much to complain about compared to a lot of you guys, but I just wondered if anyone with a mild dose like myself has managed to get any kind of care plan? I discovered that there is an MS nurse in our local hospital, so I’ve emailed her a few times, but never had a reply. Is there anything out there for me, or do I just carry on like this? I had another bug with temperature over the Christmas break, and now feel like a drunk zombie. It’s not the end of the world, but I am so tired of feeling rubbish all the time, and feel extremely alone - it’s hard to explain about how MS feels to people who don’t have it - I get so many comments about how lucky I am not to have to work! The GP makes me feel as if I am wasting his time.

Goodness … this sounds like such a moan, doesn’t it? Sorry. Just wondered if anyone had any advice out there.

Thanks for reading - Sue Homer

Easy answer Sue - change to another GP

Geoff

Like Geoff says, defo change GP! There’s loads of help for symptoms if nothing else!

Hi Sue,

So sorry to hear about your MS and symptoms. Dr Geoff has a good suggestion find a new Dr.

You should have been offered an MS nurse , maybe she isn’t replying as you need a referral the first time and as you were diagnosed in another place this hasn’t happened.

Try and rest when you can and stay positive.

Jen x

Definitely change to another GP then you can ask to be referred to a neurologist who will maybe put you on a treatment and also refer you to an MS nurse who can be your main point if contact. There’s no way you should have to just battle on without support. Best of luck x

Welcome to the club, though I wouldn’t wish it on anyone, not even my worst enemy. I wish you luck. I was diagnosed with “mild” ms in 2006 - so “mild” I can’t work, can’t drive, can’t walk any useful distance at any reasonable speed, my balance is rubbish, I lurch around at home on crutches, I can’t make a meal, can’t use cutlery, can’t carry anything, I won’t bore you with the rest, suffice to say I can’t live independently. I have no family my husband is retired and is my sole carer, and as he is in receipt of his old age pension he can’t claim Carer’s Allowance. Social Services have refused even an assessment for help because I can still (just about and often need help) get in and out of bed and in and out of the shower, and to the toilet, though it is often touch and go as to whether I will get there in time. My neurologist has discharged me on the basis that there is nothing he can do for me, so he is not going to waste any more time on me. I went straight to a diagnosis of spms. I’ve never been offered any treatment, and when I have asked about drugs I’ve heard about on this site, I’ve been refused. I don’t have an ms nurse, although my experience when I’ve made contact previously has been that if they bothered to return my call it is usually to fob me off. I am 57 years old and worked full time for over 30 years, I’d never been unemployed or claimed any benefits, and having been lucky enough to enjoy good health until ms got me have made few calls on the nhs, that same nhs which has abandoned me, but will treat drug users, smokers and drinkers who are ill because of life style choices, not to mention people who actually have no right to free treatment.

Sorry about the moan and the rant, but yes I am bitter, though I usually remain upbeat and stoical, and normally simply suffer in silence.

My husband is a gem. My gp was supportive but retired last year, and I don’t know the new one yet.

I WISH YOU ALL THE LUCK IN THE WORLD, AND SO HOPE YOU GET THE HELP AND SUPPORT YOU NEED.

Love and Hugs xx

I agree with everyone else! - change your gp!

Your gp sounds very out of date - there is plenty of help you can get but you need to insist on that referal.

You need to ask to be refered to the nearest ms clinic (hospital). You will probably see a neuroolgist again and be assesed to see if you meet the criteria to receive disease modifying drugs.(dmd’s)

There are different types of ms. If you have relapsing remitting (your ms sounds like it is) then you will be able to have the dmd’s. The dmd’s can help to reduce your relapses in frequency and severity therefore reduce the damage the ms is doing.

We normally see our neurologist once a year unless we are having a lot of problems and the rest of the time we are allocated an ms nurse who we can call if we need any help/advice.

I was diagnosed in 2005. My ms is mild like yours. I was put onto dmd’s a few months after my diagnosis. I have not got any worse but i think i would have without the dmd’s.

The treatment you have received so far is awful!

I don’t work either so don’t feel guilty about it. My husband supports us (me and two kids) and i do everything at home (cooking/cleaning/shopping/childcare). We are a team and being a mum is a full time job anyway. There is no way i could work and do everything else without collapsing.

When i was diagnosed i was told that ms is like a fingerprint - it was unique to that person. Some people have mobility problems and some have other things like bad fatigue/bladder issues/vertigo. It affects us in different ways.

The one thing i have learned through my ms journey is that gp’s know very little about ms. If i have a problem which i think is ms related then i ring my ms nurse to get some help. Gp’s are not specialists after all and i was told by my gp that there are only two patients at the practice with ms.

This does not excuse your gp though - he should have refered you to the ms clinic!

Your gp saying there is no treatment for you is disgusting!

There are no treatments (dmd’s) for primary progressive ms at the moment but trials are going on right now for this. Your ms sounds relapsing remitting to me so treatment is available for you if you want it.

If you decide not to have the dmd’s or do not meet the criteria you will still be able to get help from the ms clinic/hospital to help you with symptom management.

You have nothing to lose - INSIST on that referal.

You are not alone on here. People are happy to help. If you have questions then just ask!

Take care

Teresa.x

p.s Welcome to the forum!

I agree with what the others have said.

Dr Alison suspects a case of someone who ‘does not work for a living’ and is far too quick to assume that she ‘deserves’ no more than the dismissive attitude that she perceives in representaties of the ‘working for a living’ world. Dr Alison’s prescription? A new GP and a good dose of newly assertive attitude!

If you were advising a friend, might you suggest to her that she be a little firmer about putting her foot down and getting people to pay her proper attention? If so, please be your own best friend here!

Good luck.

Alison

I agree wholeheartedly - change your GP. Best wishes,

Moira

Like everyone else is telling you sue…change your gp…quickly!!

If I was you and luckily for your gp I’m not!! I would be telling him to refer me and if he refused I’d be reporting him for bad practice. He’s getting paid around £100 thousand a year for being a complete jerk.

I must go and practice some deep breathing to calm down

Gosh, I was bit a bit brief, wasn’t I?

But seriously, Sue, you have an absolute right under the NHS constitution to change your GP. I think this is a better approach than invoking PALS in this situation. If you need chapter and verse, I have the reference material.

For some obscure reason, the logic of which escapes me, I have been told that a GP has to pay for a referral within the NHS. I assume that this is a bit of bureaucratic money juggling that is meant to make sure that only serious cases are passed on. Of course. there are not a lot of GPs with any knowledge of Neurology, so how do they know what is serious?

You could go private (use the net to find a Neurologist near you) and you might need a referral from the GP again - but this one cannot be refused. My GP surgery said, literally, “we do not know what is wrong, but you need a Neurologist fast”. The best the NHS could do was 4-5 months. I found one on my way home from work (still 27 miles away), the surgery faxed through a referral and I got a full examination, a Dx of TIM, an appt for a private MRI, and the Neuro referred me to himself at the NHS hospital that was also on my way home from work (28 miles). Things happened very quickly after that. Swindon, by the way)

You do need to get onto a Neurologist’s books to get a MS nurse, and the system does seem to vary from hospital to hospital. Some nurses cannot do home visits, some use a general Neurology nurse who can. The nurses I have had dealings with are all very good at returning e-mails (and getting other things sorted as well), but other people have had more difficulty in communications.

Please, see if you can change to a different GP practice.

Geoff

Flowerpot I agree with Polar Bear. From what you have posted, I think that you would have qualified for both mobility and care components of DLA and, from a brief read, I am sure you would be eligible for PIP too - I am still on DLA so haven’t done a PIP claim yet. These benefits are not means tested so it doesn’t matter what your family income is. Make an appointment with your nearest citizen’s advice bureau as they are brilliant at helping with the paperwork. I am ‘in limbo’ re MS but have other conditions hence claiming DLA.

As an aside, do the MS nurses help with advice on claims etc? The reason I ask is that my mum recently had a stroke and her stroke nurse did her claim for her.

hi there

as well as chasing up a referral you should ask your gp to prescribe you some gabapentin for the buzzing feelings or tizanidine for stiffness in legs.

he may need to be told by a neuro to prescribe tizanidine but gps ARE able to prescribe gabapentin.

good luck

carole x

Sue - this is your one and only life. You owe it to yourself to get the best medical care for yourself that you can. No-one is going to make waves FOR you, you need to be aware that you deserve the BEST care that’s available - and you have to make sure that you get it. I’m aware that I’m being a little hypocritical as I hate making a fuss or inconveniencing people. But eventually I realised that no-ones going to appreciate the stiff upper lip, no fuss approach - you have but one go around on this rollercoaster and you need to get yourself as much help as you need/is available. Start making waves - educate yourself as much as you can from info on the net and then start hassling the bejesus out of your GP or the new GP and the MS nurse. Use the term ‘quality of life’ as much as you can - it’s absolutely unfair that nobody is taking your concerns seriously. Is there an MS Therapy centre nearby? A local MS support group? These places can be goldmines of information and the people there (at least in my experience) are hugely informed and really love to be helpful. Good luck !!!

I can only add to the other commenmts change your GP

I have to agree with the previous posts. Change your GP asap. If you use the ‘Near Me’ section of this website, you can find your local MS branch and ask some of the members to recommend a local GP with a much better attitude.

I live in Norfolk but had to cross the border to Cambs when I was referred for DMDs (a strange anomaly due to my postcode!). Anyway, I now have access to an excellent neurological team at the hospital. I normally have an annual check-up with the neuro and six monthly check-ups with the nurse unless I have had/am having a relapse in which case I will be seen in clinic sooner. I can also telephone the nurses for advice whenever I need to, usually I leave a message and they will ring back the same day. They even tell me exactly what fact sheets to print off and what to tell my GP when he doesn’t know what to prescribe for my symptoms :slight_smile:

I hope you get something sorted out soon, don’t continue to suffer in silence. You deserve better.

Tracey xx

Hi Sue

The way you have been treated in unacceptable and I agree with the very good advice you have already been given. If you have Relapsing Remitting MS you should be offered disease modifying drugs and whether you are RRMS or progressive you should be offered treatments for symptom such as spasticity. I have one more suggestion - use the Near Me aplication on this website to locate your nearest MS Society Branch. Each branch will have one or more trained support volunteers who may be able to help e.g. in getting hold of the MS nurse for you. You do not have to be a member of the MS Society by the way to access this support. They may also be able to point you towards local support groups.

Good luck - and do let us know how you get on

Hilary

Hi there

Another suggestion is to do an online search for NICE guidelines - multiple sclerosis and you will find out (after some heavy reading!) what treatment and care is recommended for NHS professionals to provide.

As other have said, there are treatments available for all types of MS.

Best wishes

B x

Goodness - what a lot of replies - thank you all soooooooooo much! I haven’t been online since I put the post up, so just logged in and read all the advice. I think I will have one last crack at my local surgery, but with a different GP this time as my usual is clearly not up to speed on what MS therapies are out there (I suppose they can’t be experts in everything, though I would have thought 13 years of me asking for advice would have prompted a quick look on the web by at least by one of them!). Are there rules about where you can register with a GP? I live in a village with its own practice, so assumed I had to go with geography …

Flowerpot - it sounds as if something has gone very wrong with your treatment. I don’t know how these things work, but if I were in your situation, I think I would get in touch with my MP and cc it to the Health Minister as I am sure no-one should be ‘signed off’ if they are as ill as you clearly are.

OK. Onward and upward. After my xmas setback I am starting to get some energy back (you can always tell when I’m on the mend because I start cleaning the house after having left husband and 14 yr old son in charge for a couple of weeks … yuk!!). Nothing lifts the spirits like a good scrub!

I am my own worst enemy - now I’m feeling better, I feel like a fraud (oh dear, that word again …) if I go the doctors, and they look at me as if I’m nuts and it was all in my head. But, I will do it as there will always be a next relapse and it might be easier to deal with if I’m prepaed up front. I will report back if I get any progress.