The jury is out ....

Oh thank you bloggy people.  I started to comment on comments and decided to post instead by way of reply.  Not sure again having done it once before whether this is acceptable blog etiquette or not but no matter.

Veronica - thank you for being there - I expect you are right - I did say to the gp - many years ago my 'good' physiotherapist said = the problem is really that you need a double knee and tendon replacement but no one would do it.  Why replace one dodgy tendon with another.

The gp(s) as there were two of them at the same time (scary) decided  after basic neuro exams, the classic ones I fail.... nb I always fail them always have!  So have that positive whatsit sign thingy and the rest on neuro front. Hence the referral.  I tried to say the opthalmologist said the stabbing pain in extremeties was the PHN (although last rheumy said it was Raynauds) but they said it could be neurological. (although if I am being pedantic in theory PHN is somewhat neurological anyhow)

The registrar at A & E said the chronic muscle spasms in back are from my shoulder being out - the pain management team say its from bulging discs and nerve impingement. A combination of it all is the problem I think, but that would mean one discipline would have to talk to another - god forbid.

I will add the neurologist into the pot mix it all up and come out with the same nonsense no doubt!  If things carry on as they are I won't be able to hear the answer anyhow!!

On the deaf thing - saw local friendly pharmacist and he says pass go do not collect 200 and go to A & E!He thinks its not an ear thing and Maxillo Facial (serious spelling problems on that one) need to have a look.  Haven't done that yet too busy writhing around with muscle spasms. ha ha

Geri Atric - hello thank you for your comment - they think my father possibly contracted this following whooping cough or measles as a child, although there seems to be a connection with ehlers danlos as well!  He has been misdiagnosed with late onset asthma.  Latterly - in his 70's n he has had pleurisy and severe chest infections needing loads of different antibiotics and steroids.  He is very very tired a lot of the time.  He did work for the Ministery of Defence associated with exposure to radiation at some point a very long time ago and they are looking into this tentatively.  I also think they gave him an old fashioned med the name of which escapes me - to try to get him to cough up from deep within the bottom scarred area of the lungs. He insisted on an mri and thats how they came to the diagnosis. Thank you for your thoughtfulness.

Oh em, thank you always there with genuine reassurance - go to the appointment.. - I know you are right but you are also right with the years of consultant merry go rounds.

Thank you for asking about 'B' -not too bad is she, depending on the day.  That however is a whole other story I may or may not tell - there is a whole lot of parental concern mixed up with parental boring - what the **ck is going on! (came back and edited a bit out I must respect privacy!)
Hoping your dear cute pooch is on the mend.

Just went to publish comment and up popped your comment Have Myelin.  Its weird the ear thing - i have always had ear issues although obviously not as severe as yours. I have had multiple perforations and as a young four year old had surgery for a massive abcess in throat - including ear which made me extremely poorly.

  Although I know you have a cochlear implant, the hearing impairment not being associated with the MS. I am afraid I cannot remember the reason despite spending an entire evening reading your blog from start to now... note to self pay more attention! 

In a way it wouldn't surprise me if they did say MS as a fellow EDEser forwarded me a research paper that said that those with EDS have a higher percentage of having both than is the norm.  NB  I haven't put in the statistic as getting it wrong is just scaremongering!  Not that i would wish MS on my worst enemy although in writing that I am not sure I have an 'actual enemy'.  perhaps I do and don't know, what a simply awful thought.  Over here I would get much more support if I did have it just because of the way our health care system works - sad but true.

Oh yes before I forget.. howcome people are so ready with morbid diagnosis' unmprompted.  In the supermarket today, a very friendly elder said to me - oh dear, dear... my husband did that with his leg and has Parkinsons now.  Um do I know you and I wasn't aware it was catching.  Must remember face mask in public in future. tee hee. 

I do not include you bloggy people by the way in the above paragraph - by blogging I ask I guess for your welcome input.  My guess is the lady was lovely really, I was just trying to concentrate on whether to buy a new pastry cutter which I did.  That certainly made my husband laugh as I definately can't make pastry these days.  But I am an optimistic and it may be that without the appropriate gadgets in kitchen I would give up hope - not me.  If I say that often enough it will come true.  Especially if I rub my nose (or in my case try for that and hope for the best) and click my heels together .. ha ha.  I may have got my television programmes mixed up there I think.

Steph - thank you for your comment.  I expect the same on the MRI although I did have my orbital front stuff done not long ago to do with the PHN.  Sorry for lack of medical terminology Ihave a file somewhere with medical letters in - obviously not near me!  I always plan to be organised before Consultant appointments but something happens to me 'in' the room that means I get instant amnesia on anything that is said.  Have written on this before regarding viral meningitis! But as I don't do the labels thing like a good girl god knows where that is. ha ha  I don't really understand MS factor and lesions ie: are they always in the brain or other places too.  To Have Myelin - please don't cringe on that one.  The appointment is due to come through on the choose and book system so that will be fun, normally this means one has to follow up the computer stuff with a telephone call, which is followed by a random letter saying the appointment chosen is not available and here is another.  Anyway - it can't be serious as they haven't carted me off with the blue lights yet.  Hope you get to read this post as I am not sure the commenting on previous post thing works as bloggy people keep posting.  So think I will revert to old system of commenting on comments as they come in!!!  Really appreciate you taking time out to comment as I know you are still recouperating.  Take care Steph.

Over and out - thank you for being there.

I may write another post this weekend - expect a lot of drivel lol....