LUPUS UK
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Harrumph!

Consultation for results of my scan and nerve conduction tests yesterday evening.

Nerves normal. Really? They’re in tatters cos they lost my blinkin’ MR scan! Why not tell me before I waste 90 mins travelling?

Consultant mentioned he now thinks it CFS and a bit of CBT should help. Double harrumph!!

Anyway off for acupuncture today- that’ll get on my nerves too. 😂

#keepingsmiling

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Ah, so it's CFS eh? ;P . I told my endocrinologist what I thought of my diagnosis of "Fibromyalgia" and he said, "Oh alright - let's call it CFS then". You may be able to think of some other uses for those acupuncture needles?

Yep. Keep smiling x

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Hello MsAndyIvy

I think your consultant sounds like what you will receive from your acupuncture needles, a right pr#%k!

I hope you get things sorted out soon!

Wolf_1🐺🦋😴💤

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Thanks Wolf. Thankfully the acupuncture was a great deal less painful than my consultant visits. Got some temporary relief of headache for a couple of hours. Having another session today, I’m a glutton for punishment.

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Harrumph indeed! Presume it was a neurologist saying CBT and CFS? I have found them the most likely to be dismissive and not understanding autoimmunity.

Did they check your small nerve fibres too? I think that’s the part most usually effected in lupus and CTDs and the larger fibre tests don’t usually show anything. Think they can take a small skin biopsy to see if it’s small nerve fibres damaged?

Do you mind me asking what symptoms you had that made you have the test? I have a lot of pins and needles/ prickling, sort of like my blood has fizzy lemonade in it! Is yours like that?

What are they doing about the lost scan??

X

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Hi Melba

It was my rheumy who asked for the tests and suggested CFS and using CBT. Symptoms are: peripheral neuropathy in one foot, pins and needles/tingling in feet and hands, feet always cold, muscle spasms and twitching, tremors, random intense pains.

Guess who has found the scan? Give you three chances...

No small nerve testing... I’ll get on to that. Going NHS now as I feel private is just ripping me off. Consultant had cheek to charge me £180 for less than 10 mins.

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£180 to be told it’s CFS?? Definitely find another one - if you’re near London, I can definitely recommend royal free. They are so thorough, knowledgable and caring. My consultant is seeing me every 2 weeks at the moment and is always there if I need him. In fact he spent 2 weekends in a row recently (when he was off duty) trying to sort me out at another hospital then get me admitted to his.

That’s interesting your nerve stuff is more on one side - mine is much more one sided too. The neurologists said that meant it can’t be lupus damage and must be migraine/ functional (they were exceptionally unknowledgable about lupus though and we’ve since found out they were wrong).

Hope you get some answers/ relief

X

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I’m up in Manchester. I’m 5 months on the road to diagnosis, I’m pushing but I know it can be take many years.

I’d just like some relief from some of the symptoms.

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That’s so shocking re private one not giving you the full percent?!

Your stuff sounds very like small fibre neuropathy I have all over me now. They can’t pick this up in any tests apart from skin biopsy and that can be hot or miss too. Depending on who is performing it and lab person assessing. Stick with it - you know best. Xx

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As always, ta Twitch x

Already had words with Colin his secretary about cost. ‘You’re not paying for his time but his expertise’. Really? I can read a report for £18 a minute!

Friday is always a good day for me as I’ve rested all week. And... acupuncture is deffo giving enough relief for a cheeky pint.

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