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1st Post, managed to get referral to Neurologist

Hello to all, first post after a fair bit of hanging around. Perhaps scaring myself needlessly but the more I read here (having tried to avoid reading too much elsewhere!) the more I’m feeling I need to take how I feel seriously and push for some answers. I would be gutted if finally diagnosed with MS, not least because I have a driving job which I enjoy and my main hobby is motorcycling, but I will need to start somewhere.
I am male, 42 years old and until around 1998 I was in perfect health; at that time I developed lower back issues (pelvic related inflammation). It progressed to having a lot of tingling, numbness and sharp burning pains in my arms/hands with tightness between my shoulders. After 2 years of regular Osteopath visits it all calmed down and I sometimes wonder what of it may have been stress-related with an ongoing divorce and a job I hated.
Anyway, sometime in 2003 I was hurrying up some stairs with a heavy bag in one hand and the pelvic issue came back in an shot and has remained since, although under control with Osteopathy.
Roll on to around 2009 and I started to get much more general aches and pains with burning sensations coming and going very quickly variously on feet, hands, lower neck and my lower body. I found myself sweating quite a bit at night and my wife getting irritated by my constant scratching and moving around in bed (during which I don’t wake). I always needed a warm shower and half an hour or so to shake off the worst of the aches and pains ready for the day ahead.
From then it has all been a gentle spiral with urine urgency issues last July and again in February (put down to prostate infection but I have always felt nerve related), a slight feeling of nausea sometimes and an odd hypersensitivity to certain frequencies in my right ear, often with just a static-like ticking for no apparent reason; still waiting ENT appointment for that one but I think it is nerve related myself.
In April I noticed a faint tingle on my lower lip which would come and go, soon followed by a very metallic taste in my mouth for a week or so and a distinct peppery feeling in my mouth, on my tongue and lips. The taste went but the sensations remain, coming and going over hours or even minutes! By May I had added various more things which come and go such as tender scalp and cheeks, a more pronounced nausea feeling and some nasty sharp flashed of pain on top of my head and just in front of each ear (only one place at a time). Soon the tightness between my shoulders returned with the tingling, numbness and burning pains in my arms and hands; these symptoms ebb and flow as do all others. In the past week I have developed a strange buzzing sensation which comes and goes variously in my feet, legs, arms, hands and torso although not all at the same time. I also seem to get itches all over which I can scratch but there are sensations like an insect crawling on my left foot which no amount of scratching cures, it just goes away in minutes.
Wow, I just realised how long the post is so sorry but I hope you’re still here! After blood tests in February and again this week which all came back good (except for low Calcium reading this time?), the GP has agreed her work is done and referred me to the Neurologist. I need to be sorting this rabble into something more compact for the day but meanwhile I’m trying not to stress out as that might make things worse IF my issues were somehow ‘just stress’…
I’m trying to console myself that so far I sleep fairly well (and wake up largely ok for the first half hour, odd?). I have no muscle or general fatigue issues and no co-ordination or vision problems, but then again they might be waiting for me at a later date! Many thanks if you’ve read so far, I know there are no certain answers here but I’d welcome some opinions.

Hi there!

I’m new too I’m sorry to hear about your issues, I’m not a medic so cannot give any insight. Your symptoms sound scary and I’m not surprised you’re concerned. At least you’re being investigated, that’s the important thing now. Have your got a date for your neuro appointment yet?

I had posted my own introductory post yesterday morning but it hasn’t published for some reason

Welcome Sorry can’t really help but I’ve had a bad spell for the last 7 weeks and I to love my motorbike haven’t been able to touch it and with all this great weather, really getting me down. Anyway good luck and I’m sure someone far smarter than me will be along to help

Hi Billy, and welcome :slight_smile: You’re certainly right that it’s best to try and find out what’s going on because ignoring something is not a terribly successful solution on the whole :slight_smile: Tbh, your symptoms don’t sound particularly MS-like to me because of how quickly they come and go and because of how many you have, but I could be wrong, I’m not a neuro after all. Whatever the cause, you’re on the right track to finding out and hopefully getting treatment and that’s the main thing. Neuros tend to be put off by a long list of symptoms so I think it would definitely be a good idea to try and pare down your symptom list to a nice concise, orderly list (eg, major symptoms, when, how long for), at least initially - you can always add more detail if asked and if there’s time. Don’t worry about driving: there are very few conditions that the DVLA rescind licences for. Instead, they keep an eye on driving ability by giving people a licence for a shorter period (ie 1, 2 or 3 years) and asking how we are each renewal, sometimes getting reports from consultants and sometimes doing a formal assessment (typically when people have adaptations to their car or vision problems). I know there used to be hassle for people with HGV licences (and there may still be), but I think bike licences are the same as cars. But cross that bridge when you come to it: you may not after all. Karen x

Sorry, no idea how that managed to go anon, I certainly didn’t mean it to be!

Kx

Thanks for the replies. Try as I might not to I’m finding it a bit worrying and not helping myself by looking at the stories of other people here - I’m purposely avoiding Google and all the US based stuff which almost always get you thinking the worst. But still!

My tingling lips, mouth and tongue come and go throughout the day without any apparent pattern but they’re not there that much of the time to be honest. The feelings of an ‘insect crawling’ mainly on my left sole are quite troublesome and are messing my sleep - I have had it fleetingly on my right foot and on both arms but it’s mainly feft sole. I also get pins and needles a bit now in my left foot when sitting on my bar stool kitchen chairs which maybe indicates a trapped nerve? I’m back to Osteo tommorrow for follow up on a sore neck which came on a couple of weeks ago and it does seem reading around that my neck problem could be the root of the pins and needles, ‘insect crawling’ and possibly even the burning feelings which also come and go on my left sole. Here’s hoping!

The strange ‘buzzing’ sensation continues to come and go, mainly left leg but also both feet, right leg, arms and torso. Very strange, like a mobile on silent, it comes in regular ‘waves’ but is not in time with my pulse. It feels like when you go outside and mess about in snow without gloves on then come back inside and your hands warm up. Weird.

The thing most annoying now though is the itching which just seems to crop up randomly; a quick scratch or rub and it’s gone but almost immediately crops up elsewhere. It’s rarely the same spot twice and surely with MS it would be? Sleep is a big problem but someone at work suggesting taking some antihistamines as it may be some sort of allergy and quite separate from the other things. To be fair, I have been getting tenderness around my eyes and sometimes they itch. I also have a bout of sneezing once or twice a day which is unusual for me (which seems to relieve the tingling on my face if present at the time) and a slightly sore throat from time to time - certainly not full blown hay fever but again I can but hope.

Anyway, sorry to rant again but just worrying and feels nice to write it down! Again, comments would be highly appreciated. Thanks.

Hi Billy and welcome - it’s worth taking a short but concise list of your symptoms with you when you see your neuro, and as has been suggested it’s best to start with the most severe or troublesome. Symptoms of this nature are always worrying so try to keep in mind that there are loads of other potential causes, not all serious either, but all of which your neuro will want to rule out, so there may well be lots of tests too. The main thing is you’re now in the system so try to go with the flow and take one step at a time. Try to avoid making any big life or changing decisions right now too, it’s best to wait and see what comes from the tests etc. With regards to hayfever; it’s been reported that hayfever suffers may find this year a tough one, so if it is something you have then maybe it is worth trying an antihistimine. Probably best to speak with your pharmacist or GP first. Dont worry about ‘having a rant’ either - that’s what we’re here for. It can make an incredible difference just airing our worries and feelings. Good luck and let us know how you get on. Debbie xx (p.s. apologies for the block writing too, I still can’t do paragraphs on this site!!)