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SkattyBell

Medical protocol

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SkattyBell

Hi, all

I am wondering if anyone has any advice or info on second opinions. Changing doctors/practices e.t.c. Basically I do'nt know what is the best course of action to take.I am booked in to see a counsellor on 24th Jan(2 days before my birthday!). Firstly do I keep this appointment?

With nothing appearing to be conclusive to back up my symptoms apart from my word and that of those who know me well, might I just end up making things worse? If GP can't tell me what is wrong am I actually entitled to a second opinion at this stage? My next appointment with neuro is 13th Dec. and Iam having to go in fully loaded with my version of events/symptoms in black and white(I'm not the world's best with verbal communication these days.)

Best wishes to you all.

Remember when all seems lost... Grin like Grommit!

SkattyO.X.o.X

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ddgorgeous

Katharine,

 

I am not sure about what the scenario is in England and it may well be different from Scotland, so you are probably best to enquire at yur GP's surgery, or I am sure a few other people will be able to assist you here.

 

I would think it is a very straightforward procedure to change GP's, or ask for a second opinion.

 

Three years ago I moved area within Scotland. My old GP was in Glasgow and I know my records were sent back to a central location who then sent them out to my new GP on the other side of the country. My records did not reach my new GP for about 4 months. I think if you were to change GP's within the same surgery, it is a much easier, straightforward and quicker procedure.

 

You are probably best to have a GP that you feel comfotable with and takes an open-minded view about different approaches to something like MS (some GP's appear to have no interest, or knowledge about it and even less interest in learning about it). Your GP will be the one to refer you to see others, so it has got to be best if you have a good Doctor/patient relationship with them. It will be their letters of referral that will get you an appointment with a Neuro, Physiotherapist, MS Nurse etc and you will need their letters or support if you apply for anything like DLA.

 

Any Doctor's surgery should be able to advise exactly what the procedure is, but I think it would be best to arrange to see a new GP to introduce yourself as soon as possible, although your records might be behind you.

 

Take care and best wishes,

 

Ron :angel:


ppms, dx 2001

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Wnella

As far as I'm aware, you find which surgery you would like to go to (if you know one !), ring them & ask if they will take you. I wouldn't state you are asking for a second opinion as they may 'close ranks' (Drs). Could you argue it's closer to work / home (favorite pub :cry:). Not sure if new surgery calls for medical records, or old one sends them on ? Asking your current surgery sounds good :hello:

 

If you've got appointment with neuro, it's him / her who dx you (if you have MS). From then on the GP has to accept it & issue meds etc. All the best. :angel:


"One man's hell is another man's paradise"

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SkattyBell

Thanks for the replies.

I will change docs. (Deep breaths..])

I don't know what I have, if anything. I have to keep pushing though. I am fast approaching my third year of not quite feeling right and although I wish they would, certain symptoms have not gone away, some wax and wane, ,sometimes new ones appear and others disappear or are short lived. In general on my best days I achieve less than half of what I'm capable of and on my worst days I have had to crawl from room to room on all fours.

I'm n a bit of a tricky situation really. I am already seeing a neuro (not referred by my usual GP, unable to see him at the time) and I have no health/life insurance. Oh dear! Major Boob!(How was I to know?) andyet without medical support and backup I have no claim to benefits.

Hmmm... Would I would I be this stupid if I did'nt believe there was something not right? I did'nt ask for all this. Is it too much to expect some answers? I feel like i am on my own here. Sorry to winge, but I am **@!!* off!

Skatty.O.X.O.X

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Wnella
How was I to know?
- Funny how hindsight has 20/20 vision, but we never have it beforehand. Don't beat yourself up about it :hello:

 

Is it too much to expect some answers?
- Not at all. It's your right. :cry:

 

Sorry to winge, but I am **@!!* off!
- winge away, that's what we're here for :angel:

"One man's hell is another man's paradise"

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Sluggish
Marina

As far as I know, you're entitled to change GP any time you want. I believe you're also quite entitled to 2nd opinions at any stage. As for records, I don't know which way it goes, but I think they just automatically go to your new GP. LOL, 18 yrs ago, when it was said I had ME, I must have changed GP so many times it isn't funny, must've gone round every GP in the area till I fell on one that was OK. When I tried to find a new GP this year, I walked into a surgery I didn't know and nicely told them I was looking for a GP and I made a point that I wanted one who was knowledgeable and understanding about MS as it was suspected I might have it. I knew nothing about any of the GP's there (6 in all). The receptionist asked me to hang on a minute and she went around the corner, no doubt to ask the others, and came back and listed me with the GP I now have. He was great...... I couldn't believe it.... And I got to see 2 specialist MS neuros, and got my DX. To this day, I don't know if it was sheer luck or what, but I am just so pleased to have him. He also didn't have ANY previous records of mine as they'd got lost over the years as I hadn't been with an NHS GP for 10 yrs (having then moved abroad and then used my private health insurance). All he had were the typed notes I gave him.

 

Ask local people if they know of anyone with MS and ask who their GP might be and what s/he's like.

 

Before choosing and going to a new GP, try to prepare yourself with as much as you can and also arm yourself with all the info you can get.

* This includes copies of NICE guidelines for MS (found here - http://www.nice.org.uk/page.aspx?o=89907 ).

* Make a typed list of your general life-long medical history with short descriptions (don't include things like colds and flu).

* Make a typed list of your symptoms over the past 3 years, in the form a diary - eg, when they were first noticed, how long they last(ed) and with a short description.

* Make a typed list of your current symptoms and how long they've lasted etc.

Take copies of these and hand them over to the GP/Consultant. This is what I did. Half of them didn't even bother to look at them and were only interested in their own blinkered questions which by no means covered every (if any at times) aspect of my symptoms or how I felt, so it wasn't surprising that they couldn't form a proper picture of what might be wrong.

 

The doctor and/or consultant who actually bothers to read it is the one who is most likely to be of use. That has been my experience anyway, and I went through 4 neuros, 1 MS rehab specialist, several other consultants, before I finally fell upon a good neuro - he not only faithfully read all my notes, I could tell he was also closely watching my every movement from the moment I stood up from the chair to walk into his consulting room. By then, I'd got to the stage where I sat down, handed him my notes and said: "Please read these first and only then ask me questions. It will be a lot quicker than spending 2 hrs asking me this and that and my forgetting this and that." I had become that fed up at this stage!

 

Some of the doctors/consultants loved the fact that I had made such descriptive notes and said they were very helpful. They were the docs (all but one) who insisted that some sort of DX needs to be found and who tried their best to refer me to whomsoever. It was nevertheless still a long trek for me.

 

I too got terribly frustrated that there was clearly something wrong with me but that doctors were either somewhat non-chalant about it or dismissive with a "can't be bothered" look about them, and all sorts else. It can be very demoralising at times. One just has to try to keep a "fighting spirit" going and keep plodding on until one gets an answer. I remember feeling so frustrated at one time that I wrote to my then GP (who was useless) and said: "How many more incidents/symptoms must I get before the medical world listens and pays attention, or do I need to fall over paralysed and blind before anyone takes any notice?" (these were my exact words). On another occasion, I told a different doctor that the time (months at that time) I was waiting to try to get all this properly investigated was not within the NICE MS guidelines, and I handed him a copy of the guidelines. Before I knew it, he was trying to get what he could within the NICE guidelines time-scale for suspected MS (not that it got me very far at that time mind you, but it did make a point!).

 

As for going to see a counsellor, that's up to you. It may be of no use to you at all though, if you're reluctant about it. If you do go, don't go thinking that maybe all this is in your mind after all and that the only reason you're going is to be shown this. If anything, go to have a good moan to the counsellor about how you think you're not getting the right attention and care. It might help in terms of exploring how you deal with this very frustrating time of wondering what on earth is wrong.


Marina

(belated DX in June '05, SPMS)

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Lula_lulabel

Hi Bell,

 

I have also asked for a second opinion, but I was lucky enough to "wing it" off the back of my hubby's medical insurance. If you haven't been dx'd yet, I strongly advise you to get health insurance first. The difference in the way you are treated is quite remarkable (in my experience)

 

I was dx'd after a massive attack that left me unable to walk, or even sit up. I looked like a stroke patient, but was dx'd after a 3 week stay, and course of IV steroids, in Charring X hospital.

 

The first neurologist I saw in clinic believed there was "no pain in MS" but by that time I had had another relapse plunging me into chronic and acute pain! So I went for a second oppinion! Luckily this neurologist 'did' believe there was pain in ms, and he sent me to a pain clinic. It all boils down to finding a nerologist that is sympathetic, and believes in you.

 

The upshot of it is... you can see whomever you choose in the NHS now. I am putting a link for you to the NHS in England site. It has a wealth of information on "your rights" that I think you will find a good read. Finding the right Doctor or Consultant is hard, but you must have a good rapour with them, as this is such a difficult disease at the best of times... you need someone on your side from the start. (took me several times, I thought it was me going bonkers for a while there too!)

 

http://www.nhs.uk/England/Choice/Default.cmsx

 

The only other thing is... document everything! Everything! I have in writing is in my file. I even ask for copies of all letters sent between GP and Consultant... (so I know exactly what has been said about me!) You just have to ask... what can they say...??? My notes were lost one time and I had to go for another MRI because of it.. and believe me when I say... I don't like confined spaces!

 

I also keep diaries of everything, just notes jotting say sleeping pattern if fatigue is an issue for you, or pain level on a scale of 1 - 5, or how many times you have been for a pee. When you are in that office with all eyes on you... take back-up! It's good to be able to answer any questions and be able to back it up with hard evidence... and of course always have an up-to-date copy of the N.I.C.E. document.

 

I hope this helps you a little honey.

Are you a member of the e-mailing group yet?

There is lots of support there and many wise heads... or you can kick back and just read the posts as many of our "Lurkers" do. You may find it helps.

 

Gosh bit of an epic! sorry bye Love Lula x


sprinkling magic all around

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SkattyBell

Hi, Lula.

Thanks for the info.

I had started to write everything down ready to type out for next visit to neuro, but have just had a letter informing me that my appointment has been cancelled. (Yet another!) I half expected this as it has happened quite regularly in the past.

Yep, I am a member. I might be off line for a while though as I need to try and get myself back on track, so to speak, have been a bit down in the dumps lately and need to try and pull myself out of it.

Take care,

Skatty. O.X.O.X

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Lula_lulabel

Hi Belle,

 

They cancelled your apointment! Perhaps you should get in touch with your PCT (Primary Care Trust) They are who your GP will answer to. They can acton your behalf and sort this out for you. You deserve the best care and attension, and I think you should stand up and be heard.

 

I do know what you mean about feeling down in the dumps, you are not alone honey. And this hanging over you can not be helping matters. Be strong girlfriend, I'm here, stuck in it with you :cheerleader: we may be in the s***! but we can fling it too!!!

 

Sorry, but it makes me cross that you are even feeling like this because your GP has not shown you the support and understanding that you should have.

:lolsign::cake::toot::toot::cake::lolsign:

cheer up babe :clap2::rofl2: It never rains, but it pours...

 

...soon it will pass

 

Love Lula x


sprinkling magic all around

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stranding

Skattybell

 

I really feel for you. :rofl2: All the best with whatever happens next and do hope you get something sorted soon, whether MS dx or something else. :door: Nothing's worse than uncertainty.

 

Lula


Remember to KYPU at all times...

(Keep Your Pecker Up)

Ppms 20-ish years.

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