WORRYING

[SkattyBell]

Hello,

Just wondering if anyone might tell me why my appointment with neuro. has been switched to another hospital? I am not complaining as it is closer than wher e I have been for previous appointments, but it has just got me wondering...

I am probably worrying anyway as my first MRI (brain only) was way back in Oct. last year and I have had follow up appointment cancelled and rescheduled three times now and in between been informed by a GP that what is wrong with me is highly unlikely to be MS as results seemed O.K.

I suppose I am freaking a bit now as what originally seemed like ages to wait now seems to be moving in too quickly and I just do'nt feel like I am prepared for this eventuality. Basically things have not improved fatigue/mobility/vertigo/ pain all seem to be slowly getting worse as well as all the other annoying symptoms that I keep hoping might just disappear are still there. What do I do if I am told that everything appears to be O.K? I am struggling to keep my chin up. Especially as I already feel like I am becoming more and more distant from people who I should be able to rely on. Sorry to winge. I usuakly am more positve, but have had to give up a job because it had becime too much for me, but I feel that perhaps un-intentionally I am too good at covering up physical and emotional pain, so maybe to others it would appear I am just being a lazy- arse winger with a 'cuckoo' personality! BIG SIGHS... What's a gal to do?

O.X.O.

Skats.

[Marina]

Skatty

 

The change of hospital might simply be that the neuro works at several hospitals and it's been more convenient for him to see you at that different one. Many specialists tend to work in at least 2 hospitals, mine does at any rate.

 

If you end up unhappy with either or both your neuro and GP, there's nothing to stop you from insisting on a 2nd opinion and finding another GP who might be more sympathetic. To say that it's highly unlikely you don't have MS based on a single MRI of the brain and no other tests, doesn't sound very fair to me really (as I well know!). Mind you, some docs seem to think that by telling people it's "highly unlikely", that they're putting their patients minds at rest, when in reality it seems to make us feel worse as the docs can't offer any alternative diagnosis for the way we feel. If they can't find any other reason, then I can't see how they can rule out MS based on a single test of a brain MRI only.

 

If you're told "everything" is OK, then insist on knowing what's causing all your symptoms. For instance, have you had pints and pints of blood taken to rule out all other possibilities such as thryoid, B12 deficiency, lupus, Lyme disease, rheumatic problems and so on? My neuro, even when he was fairly sure I had MS, did this HUGE blood test onme the day of the DX just to make double sure there could be no other cause for my symptoms or additional problems. Before they can tell you "everything" is OK, they must also rule out "everything" else.

 

Sounds to me like maybe you're frightened that you're again going to be told that there's nothing wrong with you - I can sympathise with that... I went through years of the frustration that goes with it and almost predicting doctors being wishy-washy or uncertain etc - and I often went through a sort of fear with it too. The ones that really got up my nose were those who'd say "Oh, I think it's a red herring to say you might have MS"... or whatever.

 

Please don't apologise for "wingeing"... it's not wingeing, it's more like a feeling of frustration and fear of the demoralisation that goes with the not knowing. There's nothing worse than fear of the unknown, it creates such emotional turmoils... how can one rationalise what one doesn't know?

 

You say

I already feel like I am becoming more and more distant from people who I should be able to rely on

When you say "should", is that you feel you don't want to bother them with your worries, or is that you somehow sense that they don't want to hear them for some reason?

[SkattyBell]

Thanks for listening.

I am worried I am going to get the brush off, this I think is causing me the biggest concern. I am bothered that I will lose the will to fight.... having to go for a second opinion is somethign that just fills me with dread!

I have lost count of the times I have had blood tested. Every time all clear.

Thyroid, diabetes, Vit.deficiencies, Lymes, Rheumatism....they have always come back clear.

I am also feeling a little isolated. I do'nt believe I need to rely on anyone, maybe this is a defence mechanism taht I have gradually built up over the years. I am afraid I get miffed at those closest to me when it appears that I do not have their support. It just saddens me that I have found myself becoming closed and detatched, better that than saying something in anger that I may regret. My children give plenty of strength and love and I hope I give them as much, if not more.

Once I get this appointment out of the way, at least I will have (I hope!) another starting point.

Thanks again. Hope neuro can throw a little light on the situation with the strange feeling you have going on with your leg.

Take care,

O.X.O.

Skats.

[SkattyBell]

Excuse me a moment...

Just need ed to let off some steam!

 

I have just had a FOURTHT! letter from our local health trust....Why I should even be surprised, I do not know!

 

Another (followup) appointment cancelled...."Dr ***** has left the practice with very little notice."

The neuro. has left the building! Judging from past experience and reading in between the lines he has either been sacked or gone private. Never got much out of him as it was and he always seemed so dis-interested.

Have I got cause to complain? In the letter it says that they will be employing a new consultant in the near future and are in the process of putting in temporary arrangements using a locum doctor.

Am now sick of the half-hearted appeasements! Never mind 'inconvenience!' It is beginning to feel like I am on a ride that I never wanted to go on in the first place and am unable to get off each time it stops.

Maybe there might be some good to come out of it all yet, perhaps I can start again with an fresh opinion? The rate this health trust is going l do'nt know when this will be.

O.X.O.

Skats.

[Hils]

Oh Skatty, [[[[[[[[hugs]]]]]]], what a mess. Those that so easily cancel appointments haven't a clue about the sheer courage it takes to face these appointments, and the gearing up required for days/weeks before an appointment in order to be able to face it.. To be let down YET AGAIN, does absolutely NOTHING to help you, quite the opposite. No wonder you have been feeling worse. It's unforgivable to treat you like this.

 

Lots of thoughts and hugs winging your way Skatty,

 

Hils

 

[Richas]

Hi,

 

I just wanted to let you know that your post struck a real chord with me. Your GP seems to have gone to the same school as mine, the isn't it odd we can't give you an answer but we won't talk about MS in case you freak out school.

 

Hellllllllo Mr Doctor, there are treatment options now - we have choices and I don't pick limboland.

 

My symptoms kicked in at the end of Oct 05 and I have been unable to work for nearly five months now - I have had every blood test there is (twice), a lumbar puncture before Christmas and my second MRI last week. I am still waiting around for a follow up appointment and a check up with an ophthalmologist.

 

One difference is that I am a bloke - nice to know that (from this evidence) the medical profession is just pants not both sexist and pants.

 

Another difference is that my work are picking up the tab via BUPA (they administer it but work pays all the bills rather than pay premiums). My last neurologist appointment was a cancellation job - can you make 5:30 this evening (call at 3:30) - a bit of a shocker, not sure I was really prepared. The first MRI scan was another cancellation with a call saying can you come in this evening?

 

This makes me think maybe you could try chasing up the NHS neurology department - ringing up and asking if there has been any patient cancellation today because you are happy to take the slot at short notice - do that 3/4 times and the administrator will probably want to make sure you get a date!

 

Anyway, sitting here waiting for the phone to ring and fretting is nearly as bad as waiting around waiting for cancellation letters and fretting. I still expect to get no answers and if you think the NHS paperwork and rules are barking you should try BUPA and their authorisation codes and different types of test - some you can have in one hospital some in another. The consultant and BUPA refuse to talk to each other at all, about anything. I will remember the 45 minute phone call where I bullied the lumbar puncture at the hospital the neuro had booked me into out of BUPA for a long while.

 

I know where you are coming from with this post. It is all so frustrating. Maybe we all blame the docs and the system too much rather than whatever it is we have?Nah, they are people and can change how they behave. The illness we have (whatever it is) just is.

 

If I could just feel better and go to work again rather than watching the snooker (did they always show it all day as well as all night or is this a new digital thing?) then maybe not getting answers would be OK. It's the no remission, no answers, no treatment, life completely disrupted but just stay in limbo that is annoying me. I need to re-plan my life now but I can't until I get a diagnosis.

 

Any diagnosis at all might help with the claim forms!! Filling in forms saying I don't feel well and I spend all day on the Internet and watching TV cos I am so knackered all the time does really make me look like some lazy git bludging off everyone around me.

 

Anyway, it's not just you I feel the same way. The appointments stress me out but they never seem to lead anywhere. What's a guy to do?

[Marina]

Why not throw the following line from the NICE MS Guideline at your doctors:

 

The Guideline

[SkattyBell]

Thanks everyone for all the advice and kind words.

I have been pondering on going for a second opinion firstly from another GP, but there is only really one doc. at my pracitice that I feel comfortable with and able to trust and I know I cannot specifically ask to see him if seeking a second opinion and this might be unwise at this moment in time, I may end up the s**t creak without a paddle!

The option of quoting the NICE guidelines to the trust is not a viable one either as although I am on the neuro clinic's list, no-one has given any indication that I could have MS so I have nothing to bargain with so to speak!

I will probably have to look into things a bit more thoroughly, but I think I will ring hospital and try to find out if I can hutrry things along a bit. I had my MRI way back in October last year and still have not had my follow up appointment. 6 months and counting! Previous to this symptoms I had over 3 years ago are still there (still no explanations) plus a gradual decline in general with other symptoms worsening and new ones appearing every now and then.

Wish me luck! I am prepared for battle once again!

MS or not... I am not putting up with this treatment any longer! Like a rubber ball........!

Take care everyone, I am going to crash out in a mo. Try to get some rest.

Loads of O.X.O.X.

Kathy.

[Marina]

Skatty

 

The bit in the NICE guidelines about having MS ("people WITH MS") is a bit of a misnomer really. The point is the one about a rapid diagnosis - it's more a question that if MS is suspected or being considered then one shouldn't have to be made to wait for anything. At least that's how I read it, and quoting the NICE guidelines whilst going through the eternal waiting game for docs to DO anything has worked for a number of us.

 

Waiting 6 months for a follow-up to an MRI which may indicate something, together with the symptoms you're having, is quite outrageous. What's the point of sending your for an MRI if they're not going to give you the results? What if it had been something a bit life-threatening like a brain aneurysm, for heaven's sake!

 

Can't your GP at least try to hurry things up for you, since I assume he's the one who referred you in the first place? I would have thought that it's part of his job to chase things up?

 

Re MRI's etc, bear in mind that sometimes a first MRI doesn't show anything conclusive, which was the case with me. It sometimes needs follow-up MRI's months or years later to look for changes. Also, a brain MRI doesn't always show lesions whereas a spinal one might. Plus, to really rule out MS, they should also offer you Visual Evoked Potentials (more so if you have vision problems) and a lumbar puncture (much as I hate to advise them, LOL) if all MRI's show nothing at all. 5% of MS cases don't show lesions on MRI's, in which case a LP and Evoked Potentials of various sorts (not only the Visual ones) should be carried out - if nothing else to conclusively rule out MS.

 

Anyway, goodonya for your fighting spirit, keep it up! And, as you hopefully know by now, we're always here for you, however you feel and whatever your mood

[davslav]

O, come on now be fair, there was a whole lot of extra dosh trown at medical servises.Doctors are in to 1/4 mil bracket and specialists more.Now how do you spend that sort of money.Sittin around hospitals dealing with people that don't even know whats wrong wit them ? NO,,,,there are conferences to go to, golf courses to be played on,titeles to be bought,politicians to be befriended.

Al that cost time and time is precius.

 

What about pharma bros ? All that dosh trown at them,,,,,woooooo,,, chase all those doctors around the world.Get ower it and get use to not feeling well and do your exercises.

[Michelle]

Oh Dear what a kettle of fish....

Skatty, try contacting PALS.. It's a patients liason service, and let them hear about your state of affairs.. If i remember correctly they can help and acton your behalf if your experiencing problems within the nhs... You can get their number from your doctors surgery.. It should be hanging on a notice board somewhere in the clinic... ALSO

Your doctor should be able to access your mri results and tell you exactly what the reports says with regards to your brain... Make sure you get a full and detailed account of the report.. your entitled to it...

 

In my thoughts

 

Michelle

[SkattyBell]

Michelle,

The way things are run at my GPs surgery are a little complicated.

My (official, on record) GP who I shall say is 'Doc. X' had the MRI results sent to him at his and my request. When I went to see him about these results and on-going problems he informed me that the results appeared fine and "I think, perhaps you can put this MS thing to bed."

On numerous occassions I have seen other GPs when my own doctor has not been available for whatever reason and still come away with unsatisfactory results. However, last year I saw a doctor who I shall say is 'Doc. A' who did everything by the book and promptly sent me for referral to a neuroligist after I had complained I was still suffering from vertigo, nausea, fatigue, clumsiness and on one frightening occassion had extreme weakness 'wobblies' and 'ghost' legs. My short-term memory and cognitive functioning was causing me a lot of anxiety at the time and I had also developed numb patches and 'banding' over various parts of my body. (I got a ticking off for not coming in sooner when things obviously had not improved) I remember feeling frightened, but strangely relieved that at long last someone was listening to me.

If I request to see Doctor 'A', with a view to speeding things up at the local hospital/trust, could this be classed as seeking a second opinion?

I want to get my life back on track A.S.A.P. but do not want to run the risk of having to register with another practice if they take offence and my notes follow me out of the door.

Wht does anybody make of this?

O.X.O.

Skatty.

[Richas]

What does anybody make of this?

 

well whatever you have I have something a bit like it, shame neither of us knows what it is.

 

 

My GP took me seriously, still does I suppose bu he defaults to the neuro. The locum seemed hapier to entertain the idea of "certain syndromes, you know what I mean? but the fundamental is the neurologists diagnosis.

 

It occurs to me that after 6 months it is time for another MRI anyway, the one last time was negative now your new neuro needs a fresh scan for comparison - how can your GP surgery help you get a date for this?

 

Me, I'm chasing em tomorrow.

[ddgorgeous]

It occurs to me that after 6 months it is time for another MRI anyway,

Do other people here have any experience of second MRI scans?

 

I asked my neuro about the possibility two years ago, as there would now be one from 6 years ago to compare against. I was told verbally on no uncertain terms that MRI scanners were used for diagnostic purposes and that there were far more pressing cases where people had not been diagnosed with anything yet. A further MRI scan would never happen, as there was no doubt that I had PPMS.

 

I thought it was a little odd at the time, but have never asked any other Doctor about having an MRI scan since.

 

Ron

[suzijulie]

i get an mri scan every 6 months and cg what ever they called as i need them,had three strokes they don't take any chances any more.

[Richas]

Hello Ron

 

I was saying 6 months as this was how long I was told it would take before a comparison to show change would help with a diagnosis - I guess this time is required for change to happen and the 6 months apart would fit the dx criteria of 6 months apart too.

 

MRIs are used to assess treatments so if diagnosed I guess you might still have some to assess progress but I guess assessing progress in other ways is a lot more important outside the trials....

[Marina]

Ron

 

I think having 2nd MRIs depends on the circumstances and on the neuro and how he "works" (eg, if he's the sort to make the DX and then never bother to see you again, or if he's the sort who likes to follow up on how you do over the years). Some of those with RRMS can have 2nd MRIs over the years to watch for any changes or progression, if the neuro deems it of use.

 

Diagnostically, some people (like myself) will have 2nd MRIs after a minimun of 6 months (often longer) to see if there any changes which might help make the diagnosis if it was previously unsure being as an earlier MRI may not have been conclusive enough. Mine were 18 months apart, and I was in the middle of quite a relapse at the time, and mine showed definite changes in my brain lesions.

 

I might be wrong, but I think they prefer to take 2nd MRIs during an attack as this is when a lesion is mostly likely to be active and will show better on an MRI. Some lesions don't always show on an MRI when they're inactive, which is one of the reasons DX by MRI alone can be a problem for some people as some lesions can come and go (at least visually on an MRI).

 

Again, I may be totally wrong, but I suspect that with PPMS - because it's known to be progressive - they don't bother with further MRIs as there's nothing much they can do anyway even if it were to show further lesions etc.

[Lula_lulabel]

Hi Everyone,

 

I was lucky in the fact that I was diagnosed after a 3 week hospitalization, where I had MRI, LP and VEP that gave me a very conclusive diagnosis.

 

However, they forgot to give me any follow up appointments, until I complained. Then I saw a dinosaur who said I was "Faking it!" (so I reported him and got a second appointment privately) Then I moved house, they lost my records... TWICE! Then the new consultant I eventually saw, Refused me any DMD because... and I quote... "you just can't!"

 

So, 18 months on... I wrote a stonker of a letter to my MP and copied it to the chief exect of my hospital, the chief exect of the county's hospital, the P.C.T, the P.A.L.S and himself and my GP. I even posted the letter for them to read on the web, lol, that shocked them! Within 4 weeks I had seen another consultant and had been given copaxone. I was intitled to the right to choose a DMD as stated in the N.I.C.E. document Marina touched on.

 

My advise is to print it out and take it and chuck it at them, then write to everyone!

There are hundreds of people out there suffering in the same way with lack of diagnosis let alone support thru diagnosis. We look to these "learned" men, to guide us thru these worrying times... but time and time again they don't deliver. The only way we can change the system is to stand up and shout about it.

 

I wish you all the luck in the world Bell, and if there's anything I can do... just ask.

 

Love Lula x

[Markie]

Hi Skatty , we know how you feel with the system. Our thoughts are with you as Ann has just had the brush off by the neuro "if thats what he was". The advice given by the others is good. As i work in the NHS im well aware of the power of letter writing etc and all trusts etc have to log , react and answer written complaints etc in certain time frames. As such they get a bit worried if a complaint becomes a big issue with multiple parties involved as it can cause issues when they are inspected. Im sure you can also request to see your medical records . It takes time but im sure they have to give you access. Im off work now until tues and will ask when i get back to see how its done. As lula has shown things can move very quickly if you enlist the help of others. We are going to wait a short while and build Anns case with the help of other professionals and then hit the neuros again. The work grapevine has told me that Anns Physio referral has arrived and we will be called in the week. At least that way we will have a written assessment of Anns weakness and limitations.

 

Take care , Mark + ANN x

[ddgorgeous]

Im sure you can also request to see your medical records . It takes time but im sure they have to give you access.

Mark,

 

The 'Freedom of Information' act came into being on 1st January 2005. It has opened up access by us to much more information that others keep on us. In many cases by law you are allowed to see a lot more information than you were.

 

I have no idea exactly how different countries within the UK are affected, but you are allowed to see what is in you're medical file. I think as long as a request is in writing, by law they have to allow you access. I have not used this, but I think just the mention of the FOI act would be more than enough for any stubborn medical receptionists to back down.

 

Last July I asked for a copy of a letter that I knew was in my medical file, I just did not know the exact date it was written. After 2 requests via telephone to my medical centre and the usual run around, the wrong letter was mailed out, so another request for the correct letter was made via telephone. The receptionist and manageress of the surgery were not happy about it, but the letter was made available. However in doing this, I ended up being added to a suicide risk list, a GP was at my door to prescribe antidepressants within 7 minutes of requesting the correct letter and I had 5 visits from a Psychiatrist over the next 6 weeks.

 

Whether it was to do with requesting this letter or not I cannot prove, but it does coincide with it all. It might be worth bearing this in mind before requesting anything from you're medical file!

 

Ron

[SkattyBell]

Hi All,Thanks for the advice ansd support.I am not so much after a request for my medical notes - I need to know if I am able to request to see the doctor that sent me for a referral to see a neuro. it was not my 'official' GP that sent me (i do not need to see my records as I have a good idea as to what will be in them! )I am not sure if I can specify who I would like to see if it is not my usual GP, without it seeming like I have an axe to grind. I am just presuming I may get a more efficient response from the doc. who sent me for referral? Or perhaps go directly to the heathl trust's appointments desk? Or both?O.X.O.Skatty.

[Michelle]

I am not going to say too much... but after being to the convention and listening to many experts on MS, RRMS etc,etc.. It really struck me about the importance of an early dx and early treatment... One expert talked about the importance of the window of opportunity in treating people with early stages of disease. apparently for every relapse there can be 10 new lesions...

I would suggest that as soon as the Society puts the convention on the site or release a video you get a hold of it...

Make sure you make a noise about your treatment if you deem it unfair or inappropriate.. After all it's your life at the end of the day..

If our house doesn't sell soon, you might see me camping out at the welsh assembly

 

Love Michelle

 

What I could make of it is this...what you and your doctors do NOW can determine what the quality of your life will be in the next couple of years....

Lets hope someone finds a cure

[ddgorgeous]

Michelle,

 

I think you may be totally correct with that. I often wonder how things might have been if someone had made a dx when I first went to a hospital about all this, it was only two years later MS was dx elsewhere.

 

Ron

[SkattyBell]

Hello All.

Typical, I get through to my surgery only to find that the doc. I would have liked to have seen is off for a month, I know that he is already on reduced surgery hours as he is due to retire fully soon... he will be missed, I am sure, as he does everything to the rule book and is highly regarded, but he deserves to enjoy a happy and healthy retirement.

Not to worry, I am ringing the appointments desk at hte hospital tomorrow, I will have four letters in front of me from after Oct. 2005 and if I need to I will refer to other appoinments previous to this date that were cancelled. I have kept those letters too.

I will leave going to the doctors for now, as I do not trust myself to behave accordingly if I get another "Well if you don't accept treatment for current problems, we are not going to move forward anywhere."

Like I have stated in previous posts... I can't move forward until I have some answers. I will keep you all posted.

Take care,

O.X.O.

Skatty.

[Michelle]

Good Luck with the phonecall tomorrow.. Fingers crossed for you.

 

Michelle