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now what? please help

Hi all, Last time I was on here I was telling you all about my visit to a very rude Neuro who seemed peed off because id arrived a month earlier than expected, not my choice, my GPs frequest, but neuro had no note of this request and went on to discharged me after saying in november 5 months earlier saying he would do more MRI scans in 6 months and keep an eye on me???

Anyway, the notes from the November clinic have been impossible to obtain, since xmas last year i have rang the neuros secretary on 8 occasions and on each occassion been told they would send a copy to me and the GP. I then got my GPs surgery on the case who have rang and sent faxs on numerous occassions to be told exactly the same thing, they were even told that they had faxed it to the surgery several times, obviously not otherwise we wouldnt be ringing! i got so annoyed that i rang yesterday and said this is getting beyond a joke and i will be making a formal complaint to the medical board if i dont receive these clinic notes by 5pm yesterday!!! at 4.30 i received a fax from them with the illusive notes, wow! it only took 9 months!!!

After reading the notes i had a sense of releif that I wasnt going mad and i did hear him say he was 95% sure i had MS and then to completely contradict everything he said 5 months later and say he doesnt think its MS and to ignore the brain scans at this time and he didnt want to see me unless i lost my vision or the use of either arms or legs!!!

On these clinic notes it says “that he looked at the MRI from recently with gadolinium. it showed a few small periventricular lesions in her brain which are in keeping with MS but doesnt look as if they were active. There were no black holes or brain atrophy. There was oligoclonal band igG pattern present in the CSF and the serum”. (can anyone shed some light on what all this means please)

He then went on to say " I had a chat with this lady and told her that she probably suffer from MS and that it is stable and not active at present. I also told her that she would not be a candidate for DMT at the moment but we will keep an eye on her and if she has any further relapses with MRI eveidence then i would consider putting her on DMT"

But 5 month after this he discharged me with no further investigations.(i feel he thought id asked to be seen earlier and that i was being over paranoid about symptoms and he was peed off) I feel really angry and confused. im still suffering with dizzy spells, balance problems and pins and needles especially on my face. Anybody have any suggestion as to what i should do next? sorry for the long post but wanted to give you all a clear a picture as possible! x

Gosh I don’t want to give technical advice, I’m not diagnsoed with MS and there are people who will come on and give you that.

I just feel so upset that you have been treated in that way. Whether you go on to make a formal complaint or not, will not take away the time you have been in limboland, worrying.

At least you have a great and supportive GP and I am sure that your GP will be as upset as you over your treatment.

I’m so glad that you have the info in your hands, and hope that from here on in you are dealt with in a speedy and professional way.

ps…be proud of your tenacity in getting the notes

love Gillian

Gosh this is terrible! I would complain!

The oligoclonal bands you are talking about are the results of perhaps a lumbar puncture. Do you remember having this done. For it to suggest MS I believe there needs to be more than 2 oligoclonal bands in the CSF and little or no in the serum. The MRI with possibly your LP are sounding like MS perhaps as the neuro initially said but I’m not a doctor.

You have a few options:

  1. either complain to the hospital through PALS. I gather you wouldn’t want to see this neuro again but is there another neuro in the team that they could book you to see asap considering the booboo they have made.

  2. Cut your loses and get your GP to refer you to another MS neuro but this may take some time. I would try and get copies of relelvant MRI’s etc from your original hospital to speed things when you see the new neuro then.

  3. Search around and look for a good MS neuro that is private and nHS in your area. Does mean you pay but you’ll be seen quicker and once you’ve had an initial consultation see if he will refer you to continue your diagnostic journey on the NHS.

What you need is a good neuro and a repeat MRI to see if there are any new lesions. Look at the MCDonald criteria for diagnosing MS so you are familiar with it for whne you see the next neuro and ask how you fit in.

Lastly your GP sounds supportive. Is he helping you with your symptoms?

I really feel appalled by whats happened to you. To be told this is likely MS then discharged.

Good luck on your journey

Reemz

X

This is outrageous and I really really hope that you put a formal complaint in.

The LP results mean that you had oligoclonal bands in both CSF and serum (from the blood taken at the same time as your LP) which indicates a “systemic”, whole body response from your immune system. To be consistent with MS, an LP should show bands in the CSF, but not in the serum indicating an immune response to an attack only on the central nervous system. LP tests are not 100% accurate though so your result does not rule out MS.

You need to see another neuro to get a proper investigation and diagnosis. If I were you, I would get some advice from your GP about how best to get this done asap - it might be that you need to get PALS involved.

If you need to know the name of a good MS specialist in your area, have a look on the “Near me” function on here.

Good luck!

Karen x

Hi, seems you and I have a lot similarites with our medical carryings on!

I am in my 14th year of having very PPMS like symptoms and have seen 13 different neuros. Some of which have a variety of different ideas!

Like you, I was so peed off with being shoved from pilllar to post, that I asked to see a top MS guy in Leeds. I had heard wonderful reports on him and had even recommended him, even tho Ive never seen him!

Well he refused to see me…discharged me without an appointment and then recommended to my local neuros, that I have an Lp. done. I can`t help wondering if this was because I had made it known that I was somewhat discontented with my treatment by various neuros. I felt they had me undergo a test, which I said was painful the first time round and preferred not to have again. I accepted the LP in the hope of finally getting a firm dx.

My treatment in a nut shell goes like this

1998…started with walking problems/falls/fatigue

1999… GP referred me to a neuro privately, as NHS waiting list was 10 months.

1999…had MRI/LP/EMG/VEP and blood tests…all came back normal

2000…needed wheelchair part time…spasms/spasticity/worsened fatigue/bladder + bowel accidents

2001… MRI…nowt

6 monthly appointments with a variety of neuros

2003…given a 95% dx of PPMS

Not great but this was the new me.

2005 …now full time wheelie

2008 MRI…normal

2010…told I didnt have MS, but HSP........similar to MS but carries a 50% chance of kids developing it..............dont know how I got it! Feel really horrible that I could pass a crippling desease on to my family.

2011…a new neuro…not HSP afterall. He showed me the 2008 MRI with 3 lesions in the neck area! Said he would prove it was MS. Never saw him again!

2011…hoist installed at home…feel totally worn out

2012…yet another neuro…not MS, but Spastic Paraplegia, cause unknown

Just had second LP this month…waiting for results. Appointment Oct 2012.

I am absolutely fed up of the way I`ve been treated.

What the hell is wrong with me? Thats all I want to know. I know I cant be cured or will ever walk again.

luv POllx