Appointment at Thomas'.: Had my... - Hughes Syndrome A...

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Appointment at Thomas'.

Suzypawz profile image
13 Replies

Had my appointment at St Thomas last Friday.

Saw my specialist & the neuroligist.

The specialist appointment to me felt like a waste of time to be honest! it was nothing that couldn't have been done over the phone & saved me the £100 it cost me to travel down there!!!!

I have had a few problems which included my elbows being in terrible pain since end of last year....which my doc here said it wasn't tennis elbow & tested me for Fibro'....so that was conluded to.....wait to see the specialist in London as he might be able to shed some light on cause!?.............the conclusion of specialist was..............after pressing the elbows several times was.....see my g.p & maybe put supports on them!!!

I would like to know whats causing it.......it isn't from anything repetetively or a strain injury?!

All he said in the end really was ....have you had a clot?.....no....ok see you next year then!

Neuroligist conclusion was.......what was my appointment with 'the shrink' from my town's results?......yes she didn't really know why I was there.....so neuroligist feels perhaps the wrong questions were asked?!! plus she never got the results sent to her anyway after all that!!!

The main reason to me sent to her is because of the chokey night time thing I get every now & then....which can be very scary! :( I feel like something is 'lodged' in my windpipe & if I try to speak or breathe in...that's it, I'm gone!!!!

She reckons it's down to what sort of person I am as I try so hard just to keep going even tho' I struggle & I don't properly accept my disease?........so by the time it gets to night time & I fall into a deep sleep my sub-concious takes over & causes them which are to do with anxiety & panic attacks ?!

Suppose it makes some sort of sense?....but still am not completly convinced?!

Oh well.....we had a nice walk around London, took my son & his girlfriend with us ( which is them in the pic'!! ) & saw London getting ready for it's celebrations. : )

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Suzypawz profile image
Suzypawz
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13 Replies
MaryF profile image
MaryFAdministrator

oh dear. and I know I go on about this, but have you had your thryoid checked! As that can be a symptom. I failed the NHS tests like many people, however St T's did my tests 5 months AFTER I had started on my own course of action with this. Even thought first person I saw suspected I had thryoid issues, and then did not test me! Let me know if you are interested and we can have a chat! x

Mary F x

Suzypawz profile image
Suzypawz

Hi hun ........yes every year they check it!

When she told me what she presumes it is...all I could think of is a 'mini me' sitting on my shoulder being my sub-concious talking to me & probably strangling me too!!!..............think I need to see that shrink again!! : ) x

jetjetjet profile image
jetjetjet

suzy-- obstructive sleep apnea ??????????????????with throat problem ??????me

Suzypawz profile image
Suzypawz in reply to jetjetjet

Yep I hear a few of us actually have this.....I'm still not convinced what she says it is....maybe it could be Hughes related or something else?....hope you're ok & getting ready without too much stress bud.

jessielou profile image
jessielou

Hi sue

Sorry visit to st Thomas's not that much help, Jet may have a point, have you been checked for sleep apnea problem? I wonder whether it be worth asking gp if he has any ideas.

Did you bring the chair back with you? :-) :-)

Hope you feeling ok.

Take care gentle hugs love Sheena xxxxxxxx :-) :-) :-)

Suzypawz profile image
Suzypawz in reply to jessielou

Hi hun, nope, every time I try to make a suggestion I get blank looks, or passed from doc' to hos' & then back again! I will lose my rag soon then I shant be so pleasant in asking!!!!

The same with my eating problem!!!

That chair must be hiding.....couldn't find it.....perhaps Adam went back for it!! ; )

Hugs hun xx

jessielou profile image
jessielou

Hi Suzi

Maybe it's time not to be pleasant to them. Gosh they make you cross!!

Crafty Adam, that chair may turn up in more of his photo's. :-) :-)

Take care gentle hugs love Sheena xxxxx :-) :-) :-)

Storky profile image
Storky

As I was reading your description of symptoms, the first thing that came to mind was sleep apnea. Now if I and others on here can think of that why is it that Doctors....you know the ones that train for years to learn about medical things.....might, just might come up with something like that too and suggest you go to a sleep study?????

If Fibro has been suggested for your elbow pains then sleep apnea should be.... as a matter of course, ruled in or out because if you deprive somebody of sleep and Im talking restorative sleep here, they will after awhile start to display Fibro symptoms wether or not they have the condition or not - its what sleep deprivation does. Moldofsky the father of sleep studies first found the link and here is a really old article that describes it.

rheumatology.oxfordjournals...

Elbows are one of the tender points of Fibro.

If I were in your shoes I would be insisting that I be sent for a sleep study. Sleep apnea is a very serious condition and needs to be treated. At the very least it should be ruled out. To suggest it is the subconscious thoughts of a over anxious person in sleep is ridiculous without at least doing that check and is nothing more than telling you that "its all in your head"!

Im really surprised that St T's has behaved in such a way, more that they have a doctor that has that attitude. He/she needs to be taken to task.

Im not a doctor but its also possible for autonomic symptoms to cause a post nasal drip that will run down the back of your throat and also cause you to wake up choking. That also does not mean it is "anxiety" or panic attacks!! Grrr

Im so sorry you had such a waste of money and time for what was obviously a well looked forward to and wished for appointment with high expectations. You must be gutted and rightfully so. Complain.

Suzypawz profile image
Suzypawz

Thank you for your words on this matter, I agree I think this has to be taken further....maybe it is what they say? but I've always said it doesn't hurt just ruling out everything these things could be first surely?!!!

Ok....back to 'not so mrs nice lady!!!!!'

I shant complain as I never have....even when being dismissed out of two other hospitals due to me asking for a second oppinion on diet & refusing anti-depresants!!!!!

All I can try to make good out of this is it was a nice time away with hubby, son & his girlfriend. :)

Carole-J profile image
Carole-J

Hi Suzypaws I have what seems like the same pains in my elbows(and elsewhere knees backetc) and I was diagnosed with Fibromyalgia. I saw a clinical physcologist and they made that descision. Sometimes it is the luck of the draw with doctors it took me 10 years to get anywhere. I have been told that it was all in my mind, it was my age etc. Don't give up keep positive about your health and ask in your area if there are any doctors that have been recommended. You have to fight sometimes to get results.

you are In my thoughts

Carole-J

Suzypawz profile image
Suzypawz in reply to Carole-J

Thanks hun, I have been tested for fibro' recently & came up negative......they are so painful most of the time.

I will keep bugging them until I get answers...

I was also told to talk to my doc' about drugs like: Prozak & other very strong ones to help with the chokey thing!!! I really do not feel like taking any of them!

xx

jessielou profile image
jessielou

Hi sue,

I think will have to see if the Boss will do buy one get one free!! Would give us an excuse for a trip to London anyway!!!

Sometimes just feel like we go one step forward, five steps back!!

Sending big hugs n love Sheena xxxxx :-) :-) :-)

Suzypawz profile image
Suzypawz in reply to jessielou

Lol...yep we need a bogof !!!

Would really like to see you get sorted out properly at last :( its not fair how you are being treated, I'll go with you if you want to get him to push for xrays etc?!!! I'll put a boot up their arses for you hun!!

I can do it for others as I feel they need it more than me.............hugs hunny xxxx

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