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Another newbie :-)

Hi everyone. Reading through some of the recent posts to this forum, it’s almost sad to see the seemingly frequent arrival of new people, but I guess on the other hand it’s great this place exists for them to come to. I’m Dave. I haven’t had a diagnosis of anything yet, and my doctor hasn’t even mentioned MS, and reading some of the sad stories of how difficult life is for some of the people here makes me feel like I’m better off than I thought I was. But still, when I read about the symptoms and I read about how people feel with MS, I strongly relate, and I fear I may have it too. About 7 years ago I woke up one morning with a line of numbness from my shoulders (both of them) to my little fingers, and when I got out of bed I realised my feet were the same - numb and tingly, particularly if I touched anything with texture like walking on carpet. I saw the GP for a diabetes test which was negative and I didn’t go back, because although it felt odd it wasn’t in any way problematic. Then last September when I’d virtually forgotten the issue, it suddenly flared up. And in the time since then it’s gotten significantly worse with every passing week. I have tremors, particularly with fine motor skills like selecting coins from a handful of them to pay a shopkeeper. This is mostly in my right thumb and forefinger, and right wrist, though on a bad day my left wrist goes too. I also get immense pain in either my forearms, upper arms, or sometimes both, and sometimes it’s a deep aching while others it’s burning sensitivity on my skin, and either way painkillers don’t seem to help. The one thing I have found that helps is one of those elasticated bandages that you wear for a sprain injury. I find it hard to carry anything too - both for fear of dropping them but also because it hurts, even something as simple as carrying an empty shopping basket. I the past week I’ve also started to lose proprioception in my arms, which basically means that if I can’t see them then I don’t know where they are, and it’s a really sickeningly odd feeling. I end up walking around like a priest with my hands clasped in front of me so I can see them - though if it weren’t for the likely reactions of those around me I’d probably adopt a zombie pose! Thankfully that usually only lasts an hour or so, but it comes and goes in just a moment, and it takes all my strength with it, so even the weight of my own arms is barely manageable. I get twitches too, with all kinds of variations - sometimes my middle two fingers start dancing to their own rhythm, more often my thumb and first finger, and in bed my arms and legs both start going. And this is a large part of why I am so worried: things are getting so much worse week by week. It’s also affecting my legs/feet to varying degrees. I get waves of tingling that feel like a shiver, and it shoots all down my left side right to my foot. On a bad day it happens so much that my lower leg starts to cramp - although again I have found an elasticated bandage brings incredible relief. I get horrible pins and needles too, randomly and out of the blue. It could be I just lean forwards and suddenly it feels like someone is sticking hundreds of actual needles into my back. But they can come anywhere, often just for a moment, sometimes all over at once. It also gets worse when I’m anxious or flustered. Going into a shop can be very stressful because I don’t know whether to get a basket or try and carry things, and if I get it wrong I can find myself ‘stuck’, stood there by a shelf needing to pick something up but not knowing how, which sounds ridiculous afterwards, but there in the moment, figuring out what to do is the hardest thing in the world. I get confused about dates too, very easily. In a business meeting at work the other day I was 100% certain it was October, and I made a proposal based on that understanding which was met with some very peculiar expressions! I felt like such a fool. At one point I had to date a form, and I just couldn’t work out any part of the date, and I asked the receptionist for the date and she said “The 13th”… which was the worst answer because then I had to ask “…and what month?”! I have good days and bad days, and even good mornings and bad afternoons - there’s no apparent pattern and it doesn’t seem to respond to or be affected by rest or exertion. Bad days come something like 5 in 7, and good days come about 1 in 30! On a good day I can get to the end of the day without remembering my problems, but lately it’s basically become a constant feature of my life. Then I started reading about MS, and I read an article on about.com where a lady tried to visualise for people what it feels like to have MS, and I almost cried reading it because there is little more powerfully emotive than the suddenly consideration that you’re maybe not alone, and there are other people out there who know how you feel without you having to explain it to them, and without them telling you that you just worry too much. It was there I first read about the MS hug too, and that was the kind of light bulb moment for me. Back when’s first had my numbness start, years ago, I was home alone and suddenly my chest tightened up, all across my back. The pain was so unbearable that I couldn’t breathe, and I had to slide along the floor on my back to get to the phone and call for help. By the time I goth to hospital it had gone. They suggested that sometimes your intercostal muscles can become sore after over exertion and to take it easy. Ever since I’ve just put up with it - I know how to recognise that it’s starting and how to get into a position where it dissipates, and I just thought it was another quirk of my often-troublesome body - never even told the doctor. And that’s kind of where I am now. Much of the symptoms I’ve described above are newer, because it’s getting worse in the rather lengthy times between my appointments. Last time I saw my doctor I had just started getting the tremor, and as a result he added ‘head and neck’ to the MRI scan he had been scheduling for my shoulders. He’s a very ‘to the point’ doctor - doesn’t ask many questions or just give you much room to speak. He’s nice, but I’m planning to try and get him to slow down and listen to the whole picture next time I see him. By that time he will have the results from my MRI. The situation more personally is that I’m really worried. My vision is fine, but I’m starting to get waves of tingles and twitching through my neck and face, and it seems like every week brings something new or something worse. What’s next?! And it’s hard to talk to people close to me because they try to be supportive by dissmissing my concerns or saying, “Yeah but we all forget things” or “We all get pins and needles now and again”. So I end up avoiding telling people, including the people I work with, but then you do something that you kind of need to be able to explain away because it looks odd. For example I’ve just changed roles and joined a new team at work, and on a bad day I sometimes have to sit and squeeze my arms against my chest to ease the pain. That looks odd, but the alternative is telling them… well… telling them what - that’s the question! Sorry for the long post. I’ve been holding all of this in for a while, can you tell?! :slight_smile:

Hi Dave I’m sorry you’re suffering and struggling so badly at the moment. I obviously cannot tell whether your symptoms add up to MS but what I can say is that I think you need to see a neurologist! Your GP is not equipped to diagnose what is wrong with you. He needs to refer you to an expert. Your symptoms could easily be MS but on the other hand there are other things that it could be too. For your health and peace of mind you need to find out what is wrong with you because then you can get help in the form of meds or counselling etc and then you can move forward with your life. I know this is all very scary and frustrating but please ask your GP for a referral. You are not imagining these symptoms and you need some help with them. Thinking of you, Teresa xx

Hi Dave,

Welcome!

I have not been dx yet either…I have my first MRI scan (head and neck) tommorow…then on Thurs. I have to have a nerve conduction test. My symptoms are a bit like yours…some exactly the same…some slightly different. They all vary …sometimes I think maybe they are getting better…then…no …here they come again …!

I think these things just take time to get sorted and dx. It’s very hard sometimes to put up with all these symptoms. Sometimes I just feel like I can’t function anymore. I feel like I don’t want anyone to talk to me …'cos I feel ‘stupid’…and I’m not.

As for friends and family…I try not to tell them that I’ve got this feeling or that feeling anymore. They do ask me and I just say ‘Oh I’m not too bad’ when really I’m falling apart. They just don’t understand what you’re going through…but I suppose before I felt like this I wouldn’t have understood anyone feeling this way either!

I wish you luck…come back and tell us how you are…we are all friendly here.

Wendy.

Ive not been dx yet, only ME? Fibro? I know only to well how difficult life can be,every part of your life changes,by all account getting a dx is a long road, Ive been on it 3yrs, and have got to start all over again, had a cr*p gp,your gp should refer you to see a neuro,good luck on your quest for an answer,

sorry forgot to say write a list of your symptoms, if you cant mention them all on the day, at least he can read them at his leisure, make sure you keep a copy, because if he s anything like my last gp, theyll go miising or be denied theyd received them

Thanks for the replies guys :slight_smile: I should clarify its not the GP who’s been giving me the advice - he referred me to a nerve doctor who specialises in hands and arms, and it’s this doctor who is dealing with my case. I think he’s acting as a kind of point of contact, referring me for various tests with other specialists. So for example the nerve conduction study I had done was with a different doctor, who then wrote back to him with the results and his reccomendations. I think my doctors specialism includes all the thoracic nerves, so while he’s not exactly a neurologist I think he’s well placed to recognise certain issues or know if he needs to send me on to a different specialist again. Part of the problem is that he still doesn’t know about all of my symptoms, so I think next time I will go in with an actual printed list. Wendy, you took the words right out of my mouth. I’ve been struggling to explain that to my partner, because sometimes when I have a headache I just ‘feel stupid’, and I say that to her but it’s hard to explain… how do you describe something like feeling stupid?! And yet it’s a very real and definite sensation, you feel sort of distant and slow and even thinking seems to be more difficult than just sitting still and staring into space.

I know were your coming from I stood at the supermarket till the other day couldnt even count my money just stood there had no idea what to do, even typing today is a chore, spelling all over the place,were before I used to write and read complicated care plans, oh the joys of being ill, just a thought as youve got trouble in thoracic area have you ever been in a car accident,have you got any damage to you spine, or got a spinal syrinx

Never had a car crash or any type of accident. I did have a general health checkup about this time last year, during which they ran a wheel thing over my spine which then drew a picture of it up the screen, and from that they said I had quite a wonky spine. But at the same time they also said it was fairly typical of a desk-worker like me, and they didn’t seem overly concerned.

Hi Dave, and welcome to the site

I’m very pleased that you’re seeing a neurologist, but you really must tell him about everything next time you see him - the patient’s symptoms is a big part of the puzzle that they have to solve! He also can’t give you advice, prescribe meds or refer you for therapy if he doesn’t know what you need. And there is a lot that can be done for neurological symptoms these days.

Is it MS? Well, it could be, but as Teresa said, it could also be one of a large number of other things too. You’re on the right track to finding out though - hopefully the MRI will reveal all!

Re explaining feeling stupid, I think you gave a very good explanation here, “And yet it’s a very real and definite sensation, you feel sort of distant and slow and even thinking seems to be more difficult than just sitting still and staring into space.” For me, things are hard when they’ve never been hard before. I make mistakes now too, when I never used to; in the past when I knew an answer, I was right 99.999999999% of the time. These days I (correctly) doubt myself and have to check things that I would never have had to check in the past (thank god for the internet!). Sometimes I just can’t work things out - I was at Costco the other week and I could do a simple price comparison between two different packs of the same thing. I have a Maths degree and I couldn’t even do some simple arithmetic. This is happening more and more these days. I forget things. I forget words. I say the wrong word. I stop in the middle of sentences because my mind has gone completely blank. I make punctuation errors that I used to berate my students about (even, gulp, it’s/its). My spelling has deteriorated too. Most people probably don’t even notice. But I do. And it sucks.

Ah, I should point out to anyone reading that and freaking out(!): cognitive problems in MS are fairly common, but they stay mild for most people. We do tend to get a bit slower because our brains are having to use longer routes around damaged areas to do things, but on the whole our intelligence is not really affected.

Back to your post(!): there are meds that can help with your pain so don’t forget to take that list with you when you see the neuro. If that’s not for a while, please see your GP.

Let us know how everything goes?

Karen x

Hi Karen, I’m sorry I only just spotted your post, after exactly three whole weeks! Sorry. Thankyou for your words of understanding :slight_smile:

I came back to provide an update, which is that my MRI came back clear. I was of course pleased to hear that, but if it doesn’t sound silly, I was also a little distraught to know that I am still plodding along with no idea what’s wrong with me.

This time I managed to list a few more of the symptoms and I think he’s finally got the picture that this is more than just a trapped nerve!! He has referred me on in two different directions at the same time. One is to a different nerve specialist, and the other, crucially and finally, is a neurologist - and better yet one in my own town so I won’t have to travel :slight_smile:

I have a question about patterns of symptoms. This week has been my worst by a long long way, especially in contrast to the previous week where I was starting to wonder if the symptoms were going away and I was getting better. Monday morning was like a truck hitting me, with a big sign on it saying “I’m still here!” :frowning:

My question is whether it is a common pattern in MS, to have such wildly varient symptoms from day to day? I get very occasional days where I am 90% symptom free, but then I get a run of bad days, a run of medium days, then back to a terrible day, and so on - there’s seemingly no way of predicting it.

And one more thing. This ‘bad run’ has been so bad that I feel like I am losing the battle. I recently switched jobs at work from one that paid really well to one that was my dream job - it cost me financially but I’m very happy as I get to ‘work’ on my hobby (graphic design). It’s awesome. I’m also on a year-long talent development programme which I battled my way on to against 40 applicants for just 12 spaces. Work is totally awesome and I love it. But… my symptoms are so much worse when I sit at a desk. So far I just work through it, but if it carries on the way it has this week then I have to seriously start to think about… I don’t know… sick leave? I don’t know if rest would help? Perhaps if I took it easy for a week? Obviously no-one can answer that, but more generally, do people find their symptoms react in any way to exertion vs rest?

I’m also going to take your advice, Karen, and speak to my GP about pain relief while I await my appointment with the neurologist. Oh that reminds me, one thing I have found that is like a small miracle is tubigrip bandages! Whichever limb is hurting, I put one of those on and it numbs the pain by at least 50%. I just need a giant one for my chest now!

It’s almost impossible to say what a pattern of MS symptoms might be - we are all so different!

Very broadly, people with relapsing remitting MS tend to have periods when they are bad (and the symptoms are there all the time, albeit maybe variable in severity during the day) followed by periods when these ease off (sometimes to nothing, especially in the early years). The number of relapses that people have can vary a lot, but they don’t happen all the time - maybe one or two a year on average? How long they last also varies - anything from a day to a year although the average is about 6 weeks I think.

People with progressive MS have bad days and better days, but when they get a new symptom, it tends to stay with them thereafter: their MS gradually gets worse, without remission but sometimes with plateaus.

Within those broad patterns, people are all different. Different things also make symptoms worse, e.g. fatigue and heat.

Could something be triggering your bad days? Have you tried sitting differently? Keeping a food vs symptoms diary? Changing the lighting at work? Is temperature a factor? Are you better or worse after rest? Etc.

I can’t really advise about sick leave - only someone in your shoes knows what the right thing to do is. Overdoing things is usually not good for MS, but again we’re all different and we don’t know if it’s MS that’s causing your symptoms. So until you know, perhaps you should listen to whatever your body’s telling you?

You can buy large rolls of flexible bandages btw - look on-line for sports physio equipment!

Good luck with the next appointments. I hope you get some answers soon.

Kx

I can definitely relate to fluctuating symptoms; bowel issues, swallowing, vibrations, pain all in varying degrees and not all at the same time. I haven’t been diagnosed with MS but have been investigated for various things since the start of my symptoms 6 months ago. You almost fool yourself into thinking maybe I have imagined all this when things are almost normal and you think it will go away but then the next day it hits you.

My work have been very supportive despite the fact I’ve had no diagnosis but thats possibly because I work in healthcare and I haven’t really taken anytime off, I’ve been struggling through apart from when I fell ill with flu- my symptoms flared up ten fold don’t know if others experience this (I was in terrible pain, pins and needles were so excrutiating that it hurt to do things with my hands and I felt like I had brain fog).

Whether you tell your work and see whether they can support you round your symptoms is a decision you have to make. Only you know how understanding and supportive they are but I can understand this is a difficult decision as so many of our symptoms aren’t noticed by other people.

I find my pain is generally better if I don’t stay in one position too long so I make a big effort at work and home to get up after half an hour and do some basic stretching. I’ve taken up yoga also which really helps. Try to listen to your body, there might be days you feel you’re capable of more where as other days doing just the basic things can seem like a big task.

I can completely understand the cognitive things. Though I’m nowhere near as bad, there have been times where I’ve forgotten the simplest of things people have told me, or I’ll forget a word or know what I want to write but have written the completely wrong thing. People around me think I’m imaging things but you know yourself what you’re like and writing complete gobbledegook isn’t like me.

It’s frustrating and the journey to reach a diagnosis whether it’s MS or something else seems very difficult. It’s good you have been referred to the neurologist - though some are better than others. Will keep my fingers crossed that you manage to get some answers to whats happening to you. My follow-up neuro review is this friday so I will see what he has to say for me.

Good luck

Reemz

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I can definitely relate to fluctuating symptoms; bowel issues, swallowing, vibrations, pain all in varying degrees and not all at the same time. I haven’t been diagnosed with MS but have been investigated for various things since the start of my symptoms 6 months ago. You almost fool yourself into thinking maybe I have imagined all this when things are almost normal and you think it will go away but then the next day it hits you.

My work have been very supportive despite the fact I’ve had no diagnosis but thats possibly because I work in healthcare and I haven’t really taken anytime off, I’ve been struggling through apart from when I fell ill with flu- my symptoms flared up ten fold don’t know if others experience this (I was in terrible pain, pins and needles were so excrutiating that it hurt to do things with my hands and I felt like I had brain fog).

Whether you tell your work and see whether they can support you round your symptoms is a decision you have to make. Only you know how understanding and supportive they are but I can understand this is a difficult decision as so many of our symptoms aren’t noticed by other people.

I find my pain is generally better if I don’t stay in one position too long so I make a big effort at work and home to get up after half an hour and do some basic stretching. I’ve taken up yoga also which really helps. Try to listen to your body, there might be days you feel you’re capable of more where as other days doing just the basic things can seem like a big task.

I can completely understand the cognitive things. Though I’m nowhere near as bad, there have been times where I’ve forgotten the simplest of things people have told me, or I’ll forget a word or know what I want to write but have written the completely wrong thing. People around me think I’m imaging things but you know yourself what you’re like and writing complete gobbledegook isn’t like me.

It’s frustrating and the journey to reach a diagnosis whether it’s MS or something else seems very difficult. It’s good you have been referred to the neurologist - though some are better than others. Will keep my fingers crossed that you manage to get some answers to whats happening to you. My follow-up neuro review is this friday so I will see what he has to say for me.

Good luck

Reemz

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