Muscle Clinic at UCLH - Hospital for Neurology

[Mooncat]

I have done a search before posting this and hope I am not duplicating - moderators - please accept my apologies if so!

I have been sent via the UCLH Hypermobility clinic to attend a 'Muscle Clinic' at the UCLH Hospital for Neurology on Tuesday. The reason being that I suffer from muscle spasms and twitches that at times looks like I am having epileptic episodes, although this is painless. Particular triggers are lying down (they can happen at night), physiotherapy sessions where I can go off all over the place and Pilates exercises - very occasionally it can happen to me in ballet as well. I wonder if anyone else has been sent to the Muscle Clinic or to neurology for this kind of complaint before, and what they are likely to do when I attend? I am very happy to report back when I have had my appointment on Tuesday.

Thank you,

Mooncat

[Spireite]

Very interested Mooncat. I've never heard of a 'muscle clinic'. I used to suffer terribly from muscle spasms, twitches and was unable to do any pilates type exercises lying on my back for setting them off - so I've 'got dozens of teeshirts' on that one. However I was just laughed at and 3 neurologists, 3 rheumatologists and numerous physios weren't interested to be polite so I'm interested to hear what they do for you. Of course the answer is to address the root of the problem and that is the stretched out ligaments.

[Mooncat]

Well I am not holding my breath as my UCLH Rheumy didn't know what they were. I am sure it will be a waste of time, and I will be laughed at - but I will let you know the outcome!

[barkingmad]

Hi mooncat,

Let me know as well!

[Mooncat]

I had my Muscle Clinic appointment today and was seen by a Consultant Neurologist. In terms of the muscle spasms and twitches that I have, the medical term being, myoclonus - Mr T did not know why I get them or what is causing them. He is sending me for Nerve Conduction Studies and EMG which I will have next month. Mr T wanted to know about any other neurological symptoms I got so I told him about recurrent calf cramps and then about what had happened to my neck last month where I had lost muscle control and had severe neurological symptoms (visual disturbance, nausea, dizziness etc). He asked if I had headaches in the past and I said a few days per month, yes. He concluded (wrongly, in my opinion) that I am suffering from migraines. Whilst this is not a problem, I generally don't believe it to be the case as it was so isolated to the neck incident I experienced last month, including falling twice when I got out of bed. Mr T has given me some medication called Pizotifen to try - and I might try it, but I am not convinced about the migraine diagnosis even if headaches are linked to EDS/HMS. Mr T is also going to conduct some tests on my bladder and maybe look into sleep tests in the future, but hey, guess what, my next appointment is not for a year!!! I was also sent for a load of blood tests, but we expect these to be normal.

[Spireite]

Thanks for reporting. Too familiar. I used to have those neurological symptoms for years, (apart from any bladder trouble) plus lots, lots more. I was put on anti-migraine drugs which were contraindicated for me and made me very ill – I could hardly breathe and took months to recover from. I had EMGs and NCS and nothing found cept my nerve conduction was slow – put down to the cold as they were done in winter, so don’t have yours done in the winter to take one of their excuses away so less chance of a wasted trip. I used to have a lot of calf cramps too but sorted by tightening up the feet and ankles.

[barkingmad]

Hi Izzy,

that is exactly what was said and done to me.. Part of me was hoping that you would come across something new. I stayed in for a few days for sleep tests involving being hooked up to an EEG and video-ed for over 48 hrs- minus the bits when I insisted on walking aound the hospital with a lovely black box recording brain activity. Apparently all my spasms and jerks were obvious on both video and EEG recording . Did they mention epilepsy? They tried to say I have some sort of un-identified epilepsy at one stage.

My nerve conductions showed up carpal tunnel, already knew I had ulnar nerve impingement anyway.

Have taking that drug as well. Not related to the above or my continued jerking/spasms etc but I used to have cluster migraines every month, now thankfully only now and again, which I hadnt said that now!

Oh well, at least you know you aren't alone, there are so many of us who have similar (in some cases identical) presentations, although I am still worried about the neck incident!

[Stone]

Are you referring to the National Hospital for Neurology and Neurosurgery in Queen Square?

I had a nerve conduction study there but like barkingmad it wasn't very helpful - like her I have ulnar nerve trouble that was mostly ignored

Stone