I have received a letter from Sheffield Hallam today and I’m being booked in for an EMG has anyone had this and do the results reflect your symptoms and how you feel with your type of ataxia. It’s a long waiting list so I have to be a good patient 🤨.
I have old work colleagues come to visit once in a while and one txt me after saying they were sorry I was having a bad day and I seemed a bit down when they came I replied to him saying that please don’t be confused when you see me like that I have very bad days but that is not a sign of weakness it’s on those days that I’m FIGHTING!! My hardest.
NO SURRENDER
Lee
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I went to the hallamshire hospital in Sheffield for an EMG. It is nerve conduction studies , to check if you have a neuropathy.
Mine consisted of small painless electric shocks on my right arm and right leg. They calculate how long the shock takes to reach your extremities. ie toes and fingers My test was found to be in normal limits therefore I don’t have a neuropathy.
Hi. My first visit to a specialist doctor (not a Neurologist) diagnosed me with severe neuropathy. He did various tests on me such as finger to nose, standing still closing my eyes with feet together, walking and reaction tests etc. Shortly afterwards on the same day he also referred me to see a Neurologist. I didn't get an EMG to diagnose neuropathy. Would this seem a bit odd to you?
Perhaps neuropathy was obvious to the doctor while you were doing the fingers to nose, and walk test. As a precaution I would contact your neurologist and query why you weren’t offered an EMG.
Morning stagger hope you are ok yes I had all the same type of tests and a diagnosis was given of neuropathy but this was at Nottingham and I wasn’t very trusting of these Nero’s but I find after just one visit to Sheffield it’s new ball game probably because they know what they doing. I’m looking forward to seeing results from the test.
morning piglet3 I hope you are well. I was told a year ago by a neurologist I had neuropathy in my left hand and foot but I questioned it but he said that was his diagnosis but not real test so I will welcome the test just not having to wait so long 🤨
Morning wobblybee hope you are doing well. Thank you as always for information they did send same leaflet with letter. It’s just I was diagnosed without this type of test and I’ll be interested to see what happens. Take care in this heat 🥵
🙂 I don’t know whether this made any difference but.. My test was done in Summer a few years ago, we were having a particularly hot spell, and during the test my skin was exceptionally warm, I had to be ‘dried off’. To be honest the sensation was mild for me, a slight twinge like a flinch from a static shock.
I have had these tests to monitor progression but I found them too painful to continue. Some people don't find them painful though. Good luck. Nice to hear from you x
Hello friend hope you are keeping well. I’m ok with any of the tests even a little pain 🥺if we get the correct results. I’m also on the waiting list for an MRI spectroscopy at Sheffield but a long wait time I have to be more patient the long haired general (wife) keeps telling me so I’ll have to wait a little longer.
I have a brain tumor and was diagnosed with cerebella ataxia with cranial nerve palsy?? I have sunct headache syndrome and on the blood results from Sheffield I have TG6 antibodies which is gluten sensitive which could cause gluten ataxia I’m not celiac so a bit confused. I think the MRI is to see what the TG6 and tumor is doing. I will definitely keep you updated
Don’t know much about EMG but you are obviously going through a lot of pain so I wish you all the best as you rightly say no surrender it’s not in the military manual.
Keep fighting my friend and dig deep when needed.
PS W Bee is actually an Artificial intelligence robot programmed in fluent ataxia 😀😀.
Hi, i had the test early before being diagnosed with FA. Remember probes? put on all fingers, yes like Patsyipswich found it painful also would of kicked me to the floor, sitting on a low level bed fell forwards, saved by the tester. I have Peripheral Neuropathy, pain daily, took Pregabalin for it but changed to Gabapentin because of a problem with ECG and a long Q wave, Cardiologist advised to change medication. Both help, as when sickness occurs not keeping medication down, i am in a lot more pain. No more tests done since.
Hello thank you for your reply I have heard it can be uncomfortable and painful for some people especially if you have undiagnosed neuropathic pain issues. My neurologist is adamant I take gabapentin but I keep reminding him that I have a bad reaction so no chance I’m sure he’s on commission from the drug companies because I’ve been prescribed 4 different drugs in three months all I have refused simply because of possible side effects it’s bad enough being how I am without throwing more problems my way 🥺 I’m sorry to read you are in a lot of pain it’s not much fun copping every day but keep pushing on try to smile and enjoy things that make you happy.
I feel for you with reactions to medication. I cannot tolerate a lot out there. Morphine 10mg patches made me feel as though people near me talking seemed far away, also was sick as a dog. Dramadol again sick as a dog. Pregabalin and Gabapentin a little tired. Pain clinic offered a pain course to learn how to manage pain, but a lot of things you do anyway, you do what works for you. On nhs had a 10 weeks course of acupuncture, to be honest this was the best pain relief ever, loved it. Legs, body felt so light not heavy felt good in myself too. Pain was there but more manageable. Worked out i would need it every 3 weeks, if i could afford it i would opt for acupuncture, no problem with needles they are different thicknesses. I had about 20 + put all over body, face, head included, in about 25 mins. I listened to wind chimes through mobile, closed my eyes felt so relaxed. If you’re at the point and exhausted medication, alternative methods could be offered to you, do try them.
I was diagnosed with ataxia in 2005, I attend the neurologist in London once or twice a year for monitoring. My neurologist suggested an EMG test to rule out the possibility of that was contributing to my leg spasicity as my ataxia type remains unknown. It was a half hour test involving a high voltage, at an extremely low current applied to the muscles in various places in the legs and feet. It wasn't painful at all. The tests came back negative, so as far as my neurologist is concerned it was a possibility that was ruled out.
Hello Tallguy101 thank you for your reply yes as you say pain is minimal for most people I recon I’ll be ok. The test is for same reason as you really a process of elimination which is welcomed seeing as the neuro at notts wasn’t bothered so for me now being at Sheffield Hallam is a god send they are all over it.
Hi I have had 2 nerve condition tests. The first at my local hospital, very quick, no pain felt and test was normal. The second at UCLH which took a lot longer was really painful and again"normal".I definitely had peripheral neuropathy, it felt like wearing tight socks all the time is the easiest way to describe it.
Since going gluten free the feeling in my feet and ankles has slowly improved. I am on no medication. I think we are all so different, there is no one size fits all even within the same SCA.
Hello Penelope2 hope you are doing well. How you describe wearing tight socks I’m similar my hands up to my elbow are like I’ve been wrapped in rubber it’s quite painful at times my left foot and lower legs are the same. It’s like permanent pins and needles 🤨. I’m at Sheffield on 21/7 for a barrage of tests and more bloodwork as I had antibodies for gluten TG6 in March I have got notably worse since then. I had bloodwork done for celiac and I’m not so GP whom isn’t clued up on ataxia. But if it’s gluten ataxia I need to dab in and get started on GF
Yes I think it is the only hospital that tests for TG6. And celiac screening which is done every where is unlikely to pick up a gluten intolerance.Good luck at Sheffield, they are excellent there.
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