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9 months off sick, no diagnosis & job on the line! Ideas?? Please :-)
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Csewhappy posted:
Hi All and sorry ... it's long!

I'm looking for thoughts/ideas/inspiration please. I have had numerous neurological symptoms for years, but had resigned myself to it all being in my head - it was implied so often ... not surprising really, as the same medical notes follow me forever!

As many of you know, I live in the UK. I really enjoyed my job as a Design and Technology teacher. I was working, despite difficulties with walking, forgetfulness and fatigue being my main bug-bears at work.
Fortunately, these were not too obvious and I was coping.


One day, my legs 'went from under me' at school and, even when I climbed up walls or furniture to my feet, I fell each time I tried to walk. I couldn't even get to the car when they suggested I go home. I had to be carried to the car.


During the last year, I have seen 2 different Neuros, had MRIs (negative with & without contrast), had EPTs (normal - although muscle testing years ago, which I thought was evoked potentials did show problems); lumbar puncture - 'more than 3 oligoclonal bands'; clinical signs: bilateral lower leg spasticity, ankle clonus of 'notable duration', right foot reflexes are reverse of what they should be, right and left pupils react differently to light. I also have lots of annoying symptoms.


I took a journal of symptoms in to my last appointment ... and it seemed to be the straw that broke the camel's back!! He wanted to know if I had friends with MS. They were ALL my symptoms that I experienced.


How can I get a referral that isn't biased by a previous neurologist??


My current Neuro has referred me to an expert, but his letter seems to imply that it's in my head ... and I can't help but think that this will influence the next Neuro!


I have been prevented from returning to work - due to my lack of mobility, my fatigue and because I'm considered a hazard due to my potential for falling. I have learned to walk with crutches and I can sort of walk for a few metres before it turns to a stagger and then a floor-wards fold-up of my knees.


I went in to school to ask about what happens when my year's allowed sick-leave comes to an end in December. It's possible (even likely) my contract will be terminated if I have no diagnosis.


I don't want to lose my job - I like it; but nor will they make adjustments if I don't have a diagnosis.


How do I stop my current neuro notes following me???


I did think of going private; however, we don't have the money and even if we did, I have to be referred. I have a fantastic GP ... so I'll check what the possibility is of NOT having notes follow me (if relatives can help out for now to go private).


Any suggestions please?
Thanks,
Carol

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hackwriter responded:
Hi, Carol,

The medical profession's handling of your health problems sounds utterly Kafkaesque; clearly your neurologist is prejudiced in your case. I don't know how doctors can sleep at night after belittling a suffering patient for years on end.

You're in a desperate spot, and desperate times call for desperate measures. If you can find a way to pay for and get in to see a private specialist in the next couple of months, it seems to be the logical and necessary next step.

Even if you do, though, it might be too late to save your job. However, getting to the bottom of your health problems and receiving proper treatment is most important right now.

Has your GP given you any suggestions? Hope you let us know what you find out. I'll be thinking of you.

Kim
 
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Csewhappy replied to hackwriter's response:
Hi Kim,

Thank you for writing back, I hoped you would and, as ever, I do feel you're on the nail. I don't think my health problems will be sorted in time to save my job, so I'll just have to focus on health and treatment for now. I'll put on my gauntlets after that!

My GP feels strongly that I should keep the appointment scheduled with the new Neurologist. She has great faith in him wishing to solve my medical dilemma ... and she has given me a little 'spiel' to say if I feel the vaguest whiff of bias creeping in.

I believe my GP would then refer me to a private neurologist if this latest one doesn't meet the mark.

Thanks again Kim,

Carol
 
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AuntyTess responded:
Morning Carol,

Can you go private for a first visit (it used to cost about 50 pounds) - to see what his diagnosis is without any notes? Am I correct in thinking that it is the same doctors who you see privately that also work for the NHS?

I am sorry you are having these problems - it was the Hospital that diagnosed me.

Let me know.

Tess
 
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Csewhappy replied to AuntyTess's response:
Morning Tess,

Thank you too for replying :-)

I have telephoned a recommended consultant MS neurologist in London. Sadly, his secretary said that he doesn't have a private list at all. She did, however, recommend sending him an email asking him to suggest colleagues who did have private lists. I emailed about 3 weeks ago, but I haven't heard back.

I'm sure you are right ... the first consultation can be private and then, they will consider NHS. Now I'm trying to find one. Will they ask for any notes to be forwarded though? Also, there is a relatively new system, whereby doctors up and down the country can access your notes. This is so, in an emergency, they have full knowledge of the patient.

There was an opportunity, some time ago, to opt out by writing and requesting that your data was NOT put on to the system - for people worried about hackers and privacy. I didn't opt out :-( It seemed like a good idea at the time! Now I wish I had opted out ... I didn't think it through very well.

I'm actually not sure whether the scheme is active yet ... so I will check with my dear GP. Even more reason to act now. I'm spending this week trying to find a Neurologist who will see me before the other one.

I'll keep in touch and thanks again,

Carol
 
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AuntyTess replied to Csewhappy's response:
Hi Carol, I am going to send an email to my friend in England (do you remember we grew up together and she has MS), she works for a Building Society and she has, or did have a private doctor (think it was a perk of the job), anyway I will see if she can help you at all.

Tess
 
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holly1416 responded:
Carol,

I'm so sorry for all the trouble you are having. If I remember from previous posts, you do have a psychiatrist? If so, have the psychiatrist write a letter to the neuro stating that in his/her professional opinion your symptoms are not somatic and not stem from any type of personality disorder.

I am a psychiatry nurse, and we have had to do this for patient's in your situation. And, it has helped them get the Neuro to take a more serious look.

Good Luck,
Holly
 
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Csewhappy replied to AuntyTess's response:
Tess,

Thank you Tess, I do remember ... that would be great and I'm very grateful that you're taking the time to do this.

It's such a coincidence. When my husband came home from work, he asked me if I had any replies. I said Kim and you had written and I jogged his memory by saying that you were the lady who was born in England and whose best friend (in the same street) also had MS. I logged in to show him and there was your new reply :-).

My email, if it helps is: carolsewhappy@hotmail.co.uk (I created this one so that students in my class could contact me if they were stuck ... It's not my main one, but I check it virtually every day.)

Thanks again Tess,
Carol
 
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Csewhappy replied to holly1416's response:
Holly,

Thank you so much for your reply. Good memory ... yes, I was seeing a lovely lady. She's a psychologist rather than a psychiatrist ... I'm not 100% sure where the major difference lies.

I must admit, shame-faced, that I cried for most of the remainder of the day when an e-mail that copied me in to the Neuro's letter landed (as requested) in my inbox and I read the contents. I felt angry, frustrated and bitter.

I did telephone the secretary of my lovely psychologist, who discharged me some time ago, affirming that I'm not nuts. My psychologist has actually retired, but she called me once the message reached her.

I was going to ask her exactly what you suggested; however, before I had the chance, she said that Neuropsychology is in a whole new league. I then felt awkward.
If you do feel that they would pay heed to a psychologist, as opposed to a psychiatrist, then I'll try ringing and asking.


Thank you Holly,
Carol
 
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holly1416 replied to Csewhappy's response:
She is correct about Neuropschology being a new league. However, if the testing didn't show any personality disorder or somatic disorder, that is actually on your side. If it were "all in your head" or you were "making it up" so to speak, that should be suggested in the testing results.

If she is a PhD, a letter from her should still help.

Holly
 
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Csewhappy replied to holly1416's response:
Thank you Holly,

I will make that call and see if she can do that for me.

Much appreciation,
Carol
 
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chelylynne replied to Csewhappy's response:
If you have those bands from the lumbar puncture..I don't really understand how they can say you aren't feeling what you are feeling.

I'm in the US so it's hard for me to help. Over here...if you want to continue to work..they need to make reasonable concessions to accomodate you. I guess they don't have that over there??

Sometimes Drs don't buy into other Dr's theories. So maybe the new neuro won't like the old one and think he's a quack. Is that an option?

Good luck kiddo,
Michele
 
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Csewhappy replied to chelylynne's response:
Thank you for your reply Michelle :-)

I thought exactly the same thing about the bands. I had a letter from the Neuro saying that the lumbar puncture showed inflammation in my spine, which could be indicative of MS or a number of other things.

In clinic, he said the same about the inflammation. When I asked about the bands, he looked up my results on his computer and said: oh yes ... more than 1, no, more than 3.
He said he was reluctant to diagnose based on clinical symptoms and lumbar puncture alone.


He was then happy to let me go without anything else sorted or arranged. When I got tearful about no diagnosis and being unable to return to work, he agreed to refer me on.


We do have 'reasonable adjustments' at work in our Disability Discrimination Act (DDA) over here; however, until I have a diagnosis that recognises a disability in me, it doesn't apply!!


I agree with you that 'sometimes Drs don't buy into other Drs theories' ... and I do hope that's the case ... each person on his/her own merit and all that. The Neuro did say they are good friends with each other, but I still hope desperately that there will be no bias. As a nurse I would not be prejudiced by others' opinions - same in teaching ... so I do hope.


Thanks for your good luck and I love being a 'kiddo' :-)
Carol
 
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chelylynne replied to Csewhappy's response:
Keep us posted! Let us know what the new dr says. The other thing that is puzzling me is...when I was in the hospital and had my lumbar puncture they immediately saw protein in the fluid..showing imflamation. Then they sent it out to check for bands...got those..then they analyzed those bands..and said..based on that..they made the diagnosis.

I hope the kiddo thing wasn't offensive. It's a term of endearment that I use. I'm in the southern part of the US and we have lots of those. I hope it didn't get lost in translation.

:)
 
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Csewhappy replied to chelylynne's response:
Hi Michelle

Sincerely - when I wrote I love being a kiddo I meant it. I'm 47 and it's YEARS since someone said that to me :-) I took it exactly as you meant it, as a term of endearment (which is lovely of you!) AND it made me feel young all day. Great. I grinned from ear to ear for an hour!!

On the 'bands' front - that's what I thought would happen ... with all the clinical evidence that he'd already said was indicative of MS, I thought the bands and inflammationindicated by high protein would be deciding factors. Otherwise, why put someone through the ordeal if positive results are then ignored??

Thanks Michelle - I will mention it when I see the new neurologist.

Best wishes,
Carol


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