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09-08-2020, 08:08 PM | #1 | ||
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"Thanks for this!" says: | Atticus (09-10-2020) |
09-09-2020, 06:54 AM | #2 | ||
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It does get better though and mediums like this really help. I'd encourage you to read some of the positive stories on here as it really helped me. |
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"Thanks for this!" says: | Atticus (09-10-2020) |
09-10-2020, 09:54 AM | #3 | ||
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As promised, Neuro letter follow up:
Further to my letter of 5th August, I had a telephone and Zoom consultation with Mr [BEEP] – he presents with symptoms which came on after a chest infection. This seemed to involve the sural nerve territory but also the small fibres. 1. Detailed neurophysiological studies looking for abnormalities of large fibres but also small fibre by Professor Martin Koltzenburg were normal. 2. Blood tests that were done which were normal or negative included LGI1 and CASPR2 antibodies as he complained of fasciculations, although he has no cramp. The calcium was normal, phosphate a little reduced at 0.86, magnesium normal, thyroid function normal, vitamin D levels normal. The symptoms he complains of are that of intermittent itchiness, tingling sensation, hot and cold patches which are intermittent and can occur all over his body. He also has twitching in the arms, forearms, eyelids and knees. The working diagnosis here is that of a post-infectious neuropathic syndrome which seems to affect small fibres and to a lesser extent large fibres. These are functional abnormalities as structurally the nerves are normal, neurophysiologically. My impression is this is a monophasic type illness and should resolve with time. At the present time I see no indication for a skin biopsy. We discussed treatment options and I certainly do not think he warrants treatment with intravenous immunoglobulin or corticosteroids. However, he is bothered by the symptoms and therefore I would recommend a trial of Gabapentin, starting at 100mg in the evening for 3 days, then going up to 100mg BD for 3 days and then 100mg three times a day. The dose can be gradually titrated up to 600mg three times a day. I have discussed the side effects of tiredness and perhaps weight gain. On the whole, however, this drug is well tolerated. If that fails, he could consider trying Pregabalin starting at 25mg at night, increasing after 3 days to 25mg BD, then 25mg in the morning 50mg in the evening for 3 days, then 50mg BD, gradually titrating the dose up to 300mg BD. I would therefore be grateful if you would give him a trial of these symptomatic treatments. He will get in touch with me if he feels he requires a further appointment or any further advice, I shall be happy to review him. Kind regards and best wishe |
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"Thanks for this!" says: | Atticus (09-10-2020) |
09-16-2020, 09:34 AM | #4 | ||
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Your story seems to be very similar to mine. I got the FLU (strand B) in January of this year. 2 weeks later I got sick with some 24 hour gastro bug that had me throwing up all day. Everyone in the household got it including my wife and son. almost exactly 2 weeks after that is when my symptoms started. The first week or two it was just my feet. They would burn and tingle off and on. From there it went to my legs to eventually my entire body. I get pins and needles sensations, burning, itching, poking, etc all over my body along with many of my symptoms you described. The first few months it waxed and waned day to day, week to week. Some days it would be a 1/10 and I could hardly tell it was there and others it would be a 6/10 and bud the crap out of me.
Then after about 4 months is basically went away for 2 months. During that time I almost forgot about it all and almost every day was a 0.5-1/10. Then, out of nowhere, it returned back to where it was originally (maybe a little less intense) and for the last month it's been the same off and on waxing and waning. My nuro also suggests it's some type of post viral issue that will hopefully clear up on its own. I've had a brain MRI, normal bloodwork like CBC, Liver, CRP, etc plus other ones to look for autoimmune disorders and everything has come back normal. The whole thing just messes with my anxiety because of the unknown. |
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09-17-2020, 04:55 AM | #5 | ||
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Yeah sounds identical! Days/weeks of normality, then spikes of annoyance! It is demoralising to be honest. I think I've already mentioned, the amount of times I thought this was on its way out only to come back is now at least 10-15 times. And each time it does regress and then come back, I repeat the cycle of anxiety, googling, etc. and it's just a vicious circle. The last few days have been annoying. Tingling and TICKLING of all things in my mouth/face/legs/arms. Twitching seems to have stopped. I started Gabapentin a few days ago but only taken 300MG so far so hoping they might help, but nothing as yet. The supplements haven't done anything yet either, but that's only been about 3 weeks. The original neuro I saw thought it was post viral too and said he expected it to clear up in a matter of weeks, but nearly 8 months down the line here we are |
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