Warning. 2nd opinions are bad for your health

[MrsAristotle]

Well what an idiot am I. I said no more. I had decided not to bother with neurologists any more and just get on with my life. But could I leave it lie NO not me.

With pressure from my family and husband I was persuaded to go to the referral by my neurologist to see someone else to review my symptoms. This guy is supposed to be a top man in MS in Bristol (UK) so why not nothing ventured nothing gained, although I had to pay for the privilege.

So I wrote him a letter prior to my appointment noting down everything that had gone on, from 1980, where I had been, and my travel and living history etc and family history.

I went in 10 minutes early wow I know that’s a first lol.

He seemed quite pleasant.

He asked me what did he think he could do for me. So we started to chat. It came about that I thought this started in 1980 as I had left side problems then, so we went through stuff that happened and he agreed that I had neurolgoical problems since 1980 based on my symptoms presented at the time.

When I told him I went blind suddenly in Brazil and when I came home he said well that’s NOT WHAT HAPPENS WITH MS. With MS you never just loose your sight.

Well that’s not what I have been told or read I thought.

He said basically I would have had problems prior to that happening. Well I did, my eyes were bothering me and I had loads of blurred vision.

Anyway no MS not with that particular symptom even though it happened twice and I subsequently had real problems with pain and burning in my eye and a positive VEP. Then I asked him about my positive VEP well guess what you expect things to slow down when you get older (yep he pulled the oldie card on me).

Then he said he didn’t think I had MS because on the MRI scan I gave him which was taken 3 years ago, he said he would expect to see MORE on the MRI if I had MS for 30 years and people don’t have MS for 30 years as a rule without knowing it. (Hum tell that to Amy Winehouses mother who has just been recently diagnosed after having her first episode 30 years ago and over the years suffered with strange symptoms until she collapsed 7 years ago and has only just been diagnosed with MS after extensive testing).

Now hang on a minute MORE on the MRI? So there was something then? (Even though I was told it was clear apart from a large cluster of foci with high signals in the deep white matter of my brain).

Then I said well what about all the lesions found on my spinal MRIs OH HE HADNT SEEN ANY OF MY MRI’s because he couldn’t get into the new NHS DATABASE!!!! (In the UK they are trying to centralise everyones results so anyone can see it anywhere in the UK and it isnt WORKING what a surprise).

So he is basing his thoughts on one MRI 3 years ago. And I thought that lesions HEALED THEMSELVES ANYWAY.

He said my symptoms were classic MS, but he wouldn’t give a diagnosis of MS unless there was 100% on MRI films.

He did loads of tests and just ummed and ahed and wrote some stuff down.

So we talked back and forth me getting me and more frustrated.

I had mentioned my fatigue so finally he came back to that and said HE THOUGHT I COULD HAVE CHRONIC FATIGUE SYNDROME.

Well at that point I nearly hit him with my cane LOL.

He said had my other neurologist not suggested this and I said to him looking him straight in the eye NO, actually I asked him could I have ME/CFS and he said NO I had definite neurological problem evidence on the MRIs.

So after going back and forward with that idea, he said well I could have a rare form of MS, or something that is rare but wont kill me but he really needed to review ALL my scans (If I had known he hadnt seen them I wouldn't have gone what was the point????).

He thought I might have something that is causing my central nervous system to stay on HIGH SWITCH.

This makes a bit of sense as when I had my SSEP test the electrodes on my wrist made me scream out loud and I couldn’t have it done, I cant stand on scales that use electrodes to work out your weight and BMI and a few other weird things.

Then I asked him about my positive ANA, and he said he thought I should have been sent to see a rheumatologist as my symptoms and tests including the lumbur puncture could be Lupus. He was very concerned about my swellings in my feet and my swollen hands, so is going to suggest I see one.

Now don’t get me wrong folks but I have said over and over I thought it could be Lupus (my dad had it), but my neurologist said NO and wouldn’t refer me to see a rheumatologist as he was convinced I had a neurological disorder.

So folks 2nd opinions to me are just a waste of space like I always thought because if you have not got a diagnosis after 3 years by one neurologist you aint gong to get one from another UNLESS IT IS BLATANTLY obvious what you have.

I got the impression from this guy that unless you are text book ANYTHING, you aint going there, as they don’t have the time or the resources to find out what it really is.

He said he could do loads of tests to find out what it is but it would cost me 1,000s.

So out comes the usual twaddle label, CFS or Fibromyalgia.

One of the main reasons for this idea is because I said from 3pm my fatigue was so bad I had to go to bed by 6pm and sleep by 8pm, and this doesn’t happen in MS. You don’t get chronic fatigue in MS.

So there you go.

I will never go back to see anyone. I would rather look after myself. Like he said even if he said I had MS there is nothing for me anyway, so whats the point as I am too old they aint going to spend any money on a pensioner now are they.

So if you want to keep your sanity be warned. I think there is a conspiracy out there where by nuerologist are told no more MS unless you follow the guidelines 100% as there are just too many limbo landers at the moment with no diagnosis but lots of symptoms.

Mind you I had the last laugh, I stayed with him for an hour instead of 40 minutes and made him late for his next appointment by heck I made sure I got my moneys worth LOL.

Thanks for reading the above sorry its so long, but I should have gone with my instincts in the first place and saved myself 200.00 pounds.

So I am going to stick with my Chinese practitioner cant wait for her to come back off honeymoon so we can get cracking and get me back on my feet.

Thanks for reading and go steady out there. Stress is the worse thing for our illness no matter what it is, and the neurological department for me causes more stress then anything LOL bless um.

Wheres Dr House when you need him LOL.

[Charley123]

I am so sorry you are going through all of this.  Hitting neurologists with canes sounds fine to me.  Last week, I had a similar experience with my neurologist which came as a total shock to me as he had just ordered Copaxone for me about a month ago.  I haven't written about it because I have been too confused and angry, but in the next day or so I hope to.  I really if any of them know what they are talking about....where do they get their MS info from...comic books?  I hope you will keep trying to find answers...I should be saying that to myself.  Charley.

[Karen99]

Oh my goodness.  I am aghast!  This doctor has no logic in his thinking and contradicts himself.  He's talking out of both ends at the same time.    

You will not consider seeing a rheumatologist?  Maybe the third times a charm?  (don't swing your cane at me, LOL)

I've had accupuncture a few times and it did wonders for pain and stiffness.  I was wary of those herb concoctions they gave me to drink.  

Good luck to you.  

[Lulu54]

Mrs. A,
Is it possible to ask for your money back  ?  This sure was a tremendous waste of your hard earned pounds and your time.  

It seems like a pattern with the experts that the higher they are in the expert ranking, the less they exhibit the traits that we all need in our doctors.  Perhaps they get too full of themselves and their importance that they forget why they becamse a doctor.

There are so many wrong things that you were told, and obviously you know them, that I won't even go through the list.  

As for the Chinese practitioner ... I would love to know more of the details.  I believe that western medicine could learn alot from the eastern ways.

be well,
Lulu

[doni54]

I'm right there with you, sweet lady.  When I went to my 1st neuro, I gave him my timeline, which like you, my symptoms first began in 1980, with the dx of colorblindness.  He just looks at me and says that if I'd been having symptoms this long I wouldn't still be walking if it was MS.  So, I understand where you're coming from with your attitude about neuro's.  

I don't have health ins, and can't afford all the extensive tests, so I gave up.  I did find a new PCP though, and she was appalled that my neuro fluffed me off.  She couldn't believe that with my symptoms that he didn't give me a clinical dx on my first visit to him, as I was textbook, by the numbers, MS, even without lesions showing in my MRI.  

Though this doesn't do me much good in the larger picture, she did give me a clincal dx of MS and it made me feel better just knowing that I finally had someone in the medical community on my side.

I'm also like you, in that I decided to just take care of myself and do what I thought might help me get through.  I'm almost 55, so I just decided to take care of myself and do the best I can.

I am taking LDN now, prescribed by my new PCP, and hoping that I might be one of the lucky ones that it helps.  It's not a DMD, but has been shown to help slow down the progression.

I'm praying for the best for you and sending you strength to deal with all you have to deal with.

All the best and many hugs
doni

[Eyesnlegs]

Oh dear what a mess, I am interested as to what part of the UK you are in as he sounds as idiott!!

Firstly my neuro also told me that lesions do not disappear as I still had the ones that I had had 5 years ago and with this he pointed to a very large one which was defined 5 years ago but now had ragged edges. Well from my research and the knowldge on here I know that is not true, but even with that he still dx me.

As for the fatigue, I am currently attending a Fatigue Management Course specifically for MS sufferers, organised by the neurological team in my area and involving OT, PT, Specialist Nurses, Dietitians and last week we did Yoga!! So he is talking twaddle!!! The course I am on involves 10 of us with MS all about my stage and the MAJORITY get more tired as the day goes on and have the same problems as you.

I feel really angry about what he has said to you - what do they need a flashing light and an arrow over your head pointing to problems - eeeeeehhhhhh.

You know I paid private for 2 appointments and my neuro realised that if I was going to go to that trouble I was serious. I also took along with me a timeline and a 'then and now' description of how I was and how I am now and I did not give it to him - I read it out - well I was paying for it.

It took that mush to make him listen.

Take care sweetie and be strong.
(((hugs)))
Pat

[wadeheather]

That's a crock! Where did he go to get his degree? A cave?

They say the third time is a charm....that's what I'm in for tomorrow. Who knows what will happen, but I'm horribly nervous. The 2nd opinion I got was to "suck it up." At that point I had said "screw it" too, but the bottom line is that we have to be our own health advocates because no one will do it for us.  Keep fighting!  You're worth it!