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Advice please

Hi

I have been following this site for a while but would appreciate some advice.  I have had symptoms for several years, bladder urgency, left side weakness, stiff hands and shooting pains in thumbs, stiff legs and slow walking, memory problems.  I thought my symptoms were all back related but I was diagnosed with fibromyalgia and that began my search for answers.  I have since had several tests and various visits to different doctors but I am only more confused now as each one has a different idea as to the cause.  One neuro said defintely not fibro but he does not have the answer.  Another neuro said signals to brain were the problem and it was  functional and another rheumy said definetly not fibro but could be chronic fatigue.  I have not seen anyone for a while and thought I would take the sit and wait approach, as quite honestly I was lost as to whether I would ever find the correct dx and how. 

Just recently I started to have back spasms which are getting more regular - 4 in the last 6 months.  The last one over New Year I was in bed four days unable to move only to slide to commode I was unable to straighten up.  Emergency doc prescribed Baclofen which was brilliant but I am now beginning to wonder about dx again and where I stand.  My GP is not really helping only sending me for physio.  Any advice to my next move would be greatly appreciated.

helloand welcome

you will find this site brilliant for help and support and sometimes we can just have a moan and there's someone who will listen.

its very hard i know that you have all these symptoms and dont seem to be getting anywhere

 have you had any scans??

sometimes gp's dont really understand what its like for people like us and dont know enough about ms.

what advice to give you would really depend on what tests you've had so far and what the results were although clear results dont necessarily mean there is nothing wrong with you.  ive done the sit and wait thing to but am now trying to move forward again.  sometimes i think we have to keep pushing for answers and other times i want to forget about it  as its no good for my health to keep getting different diagnosis, ive had fibro, likely ms, ME/CFS and now the "its all in your head" flavour.

best wishes

mandy xxx

 

Hello, and welcome to the site happy2

 

All those differing opinions must be very confusing!

 

What tests have you had? What were the results? Were there abnormalities in your clinical exam (when the neuro tested your reflexes and got you to do things)? How likely is it that your back problems could cause these symptoms (i.e. what has your back specialist said)?

 

Is there a better GP in your area perhaps, who would help you find out what's going on for sure? One thing's for certain these days - we have to take control of our healthcare if we want to get what we need: if you don't ask, you don't get!

 

Maybe the next step will become clearer if you can put the answers to these questions together?

Karen x

 

 

 

 

 

 

 

Hi Mandy

Thank you for your reply. You sound very much like me with many different opinions from various sources it only adds to the confusion and uncertainty of it all. I know these things are all very similar but treatment in some cases very different and when you get suggestions "its all in your head" frustration and anger can set in. That is why I stepped back and waited.

I have had brain MRI that did show lesions but neuro said due to age and blood pressure they were normal.  Evoked potentials were normal.  Neuro exam has shown brisk reflexes, unsure if that is a sign of anything or not.  I was invited to have LP but it was one big farce and I was scared to have it (temporary ward was set up and curtains only separating patients awaiting LPs.  Man in bed opposite to me very upset and doc having difficulty doing procedure.  I panicked and told nurse unable to wait).  I suppose in a way I know I should have LP but with my back problems I am afraid I will do more harm and probably be no further forward anyway.  Best wishes

Denise xx

 

hi denise

when did you have your mri and have you had more problems since.

the neuro's have to follow the "mc donald criteria"  (might be spelt mac) and that may be why you're not getting anywhere with a firm diagnosis, there are, i think so many things it could be that everything has to done in a certain way.

there was a post on here about the lp procedure which is much better and i, like you, would like an lp but am terrified of it.

love mandy xxx

Hi Mandy,

I had last MRI a while a go and yes I do have more problems now eg hands are continually stiff and tingly.  My bladder problems also seem alot worse continually wanting the loo night and day. The back spasms are a new thing as well, and totally different to my other back problem. Because I have suffered so much with my back in ways of very sudden pain the idea of an LP does scare me, but do you think these days it is the only way of a definite dx?

hi

no i dont think its necessary but it could help.   i think you are quite entitled to go back to gp and ask to be re referred now that you have new symptoms and that the other problems are getting worse.  if you google mc donald criteria you will see why it could be very helpful to go back as you might be satisfying the criteria now.

 

i dont know if the lesions are normal or not but i do think that doctors etc dont always let on what they think and its their way of trying to let us know that we are ok and theres nothing to worry about, i disagree with that but can see why they may do  it as they cant actually tell you its ms unless the criteria has been followed, because whilst its not 100% proved it still could be a number of things??

you need to make notes of what is happening with your symptoms and when etc as its so hard to try and remember everything.   whatever you do though dont give your list to the neuro without working through it first and keep a copy for yourself.

im sure you will get other replies too, there are lots of helpful people on here.

 

mandy xxx

Hi Karen

It was unfortunate but I had to change GPs recently, and although my new doc is ok he seems to have taken the view its fibro or chronic fatigue and  I should accept it.  He thinks neuros have done all they can, which of course is not true it was because I refused LP that they could do no more at that time.  I have told him this of course but I feel I am getting the brush off.  I only really want to know what is wrong and feel happy that I have the correct dx and all docs are of the same opinion.

 

it so annoys me when they tell you it s A B orC, then because they cant prove it is C they just "go along with A or B till something else comes up !!sad  then they have the cheek to wonder why we question it.  going for a lie down in a dark room until i feel a bit calmer ............

karen is fab and she really knows what she is talking about, we'd like her to be our neuro thumbsup

 

xxxx

 

 

If all the uncertainty is adding to your problems, then the GP really should pull his finger out

The McDonald criteria for diagnosing MS were changed in 2010 so that fewer lesions are required to make the diagnosis. These were published in early 2011 and started being to be put into practice during 2011. So if you had your MRI scan before this happened, none of your specialists can agree on a diagnosis, and you have new symptoms, I think you have grounds for a new referral. If this GP won’t give you one, then I suggest that you contact PALS as a first step and/or speak to the Practice Manager at your GP’s surgery. If they can’t help, then perhaps you need to think of moving to another surgery?

Incidentally, your symptoms suggest spinal lesions. Have you had your spine scanned? If not, then that’s more grounds for a new referral.

An LP is not essential for diagnosis, but it can speed things up a lot. It really isn’t as bad these days as most people think. It might be trickier because of your back, but that rather depends on what’s wrong with your back. For example, LPs can be done with x-ray guidance if needed - so that bad vertebrae etc can be avoided.

Perhaps your GP might take you a bit more seriously if you take a more assertive & scientific approach with him? For example, if you make a list of reasons why your current diagnoses do not explain your symptoms and the fact that the consultants could not reach a consensus on the cause, any missings from previous tests (including the LP) and the changes to the McDonald criteria, then attach evidence from the internet to back these points up, all attached to a letter explaining that the uncertainty is adding to your medical problems and that you want a final opinion in order to ensure that you are getting the appropriate care and treatment for your condition.

Worth a try???

Karen x

Hi

Thank you all for your responses and I  certainly feel more positive for posting.   I will make a list of all my symptoms and defintely be more assertive when I see my  GP next time. I thing the fear of LP has held me back but what the heck it cant be any worse than living in the dark with several different  labels. I will keep you updated with my progress.

hi denise

yes do let us know how you get on, we can spur each along the way xxxxxxxxx

a bit of a pep talk makes things a whole lot easier to face thumbsup