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On-going Undiagnosed Issues

Afternoon,

Thought I’d register on here and type up a bit of what has been going on with me. I’m pretty convinced I have MS. Around Christmas I started to develop slight tingling sensation in my fingers, very intermittent at first but then more frequent. Then my legs started getting achey and heavy (intermittently at first), now, although I can walk around (slowly) I can’t stand on tip toes, walk at any pace and after Wales won the 6 nations I did fall over, and was unable to get up. Fortunately outside LGI, and one of my mates carried me in and after 15 minutes I was up on my feet again.

I’ve had an MRI (negative), blood tests (negative), but Nerve Conduction tests have registered as abnormal, and need to go back to see the Neurologist and Neurophysiologist (not sure how I got the 2 appointments, but I’m taking them both because I am getting so utterly angry with everything). What has made things worse is because of all the “tooing and froing” from the NHS I now have stress related anxiety, for which I have been prescribed Citalopram. These seem to be working, to the extent. But I find that I am pretty numb to a lot of things now. Not hugely but as I described to the Dr’s, my lucid consciousness has all but gone, I have no imagination anymore, frankly I have very little desire to do anything physical. Again this is hugely frustrating, and the Dr’s I have seen are being as helpful as chocolate teapots. Apparently “I’m an interesting case” and they can “understand what I’m going through”. But how can they? Being told by a middle aged referrer(my affectionate name for the Dr’s at my local practice) that they can appreciate how hard it must be. Rather than making it look like I am ranting, to put this in perspective, last year I did the Yorkshire 3 peaks, was a keen gym goer (benching around 100kg), now I struggle to maintain hold/grip a dumbbell of 4 or 5kg and sometimes squeezing a shower gel bottle is an effort. Walking is difficult, but some days are better than others, running is absolutely out of the question, and if I jump, or put too much weight on my legs unexpectedly I will stumble and my legs feel really rubbery. I’m sick of being in “limbo land” as it’s called, I have weeks of what I think is gradual improvement and then it comes back! Moreover, when I have bath and get really warm the problems are hugely exacerbated, and my hands are out of actions for a few hours. All of these things make me feel really bad for my amazing partner who I must truly pee off with my negative/flat attitude.

All this is made worse by the fact that I’m never ill. My partner use to laugh that if I had a cold, it lasted a day. I’ve had this numbness/tingling since December, I can’t work out, can’t go fishing, can’t really do anything that I am use to/want to do. I just feel helpless and angry and frustrated.

Does anyone else understand what I’m saying?

Hi Paul,

Yes, I do understand what you are saying - and hear you 100%.

I am also in ‘limbo-land’ have been for several years. although I have other neuro conditions I feel very small and insignificant when I ask my neuro about the symptoms/relapses etc that I have. The latest episode happened last Friday. Sudden onset of loss of sensation on the tip of my thumb. It is like ice to touch, and woke up this morning to find my index finger has followed suit!.

The past twelve months have been horrendous for me, and I often end up in bed for anything from ten to 21 days with symptoms of spasms, loss of sensation in my legs, arms etc. I can’t name then all because I would be here all day.

Good luck for your next stage in this wonderfully frustrating ‘dance’ that the neuro’s are doing.

Bev

Hi Paul,

Yes, I do understand what you are saying - and hear you 100%.

I am also in ‘limbo-land’ have been for several years. although I have other neuro conditions I feel very small and insignificant when I ask my neuro about the symptoms/relapses etc that I have. The latest episode happened last Friday. Sudden onset of loss of sensation on the tip of my thumb. It is like ice to touch, and woke up this morning to find my index finger has followed suit!.

The past twelve months have been horrendous for me, and I often end up in bed for anything from ten to 21 days with symptoms of spasms, loss of sensation in my legs, arms etc. I can’t name then all because I would be here all day.

Good luck for your next stage in this wonderfully frustrating ‘dance’ that the neuro’s are doing.

Bev

To add: I don’t think I will ever be dx with MS. In my mind the many different neuro’s I have seen won’t go beyond the previous comments in my notes - almost like they aren’t brave enough to actually step out of the box and ‘risk’ going against their colleagues…that in itself reminds me how long I have been in the neuro system, therefore, I doubt I will ever find a decent practitioner who is commited to the patient sat in front of him. They need to put the notes down, ‘listen’ then comment from their own frame of reference - then read the notes.

B

To add: I don’t think I will ever be dx with MS. In my mind the many different neuro’s I have seen won’t go beyond the previous comments in my notes - almost like they aren’t brave enough to actually step out of the box and ‘risk’ going against their colleagues…that in itself reminds me how long I have been in the neuro system, therefore, I doubt I will ever find a decent practitioner who is commited to the patient sat in front of him. They need to put the notes down, ‘listen’ then comment from their own frame of reference - then read the notes.

B

I hope that the upcoming consultation with the neurologist takes you a step towards finding out what ails.

I am interested in what you say about the Citalopram. Someone I know who was never ill and is a very vigorous, physically fit and diligent person developed depression because of a bad life event and he says that he has been suffering from what he calls ‘Citalopram give-a-shit-itis’ ever since. He is smiling, but he really can’t give much of a stuff about anything, which is a big personality change and (in his view) a very mixed blessing. It is a good drug and works well for many, but not everyone. It sounds from what you say that it is dulling your experience of life a bit, and anti-depressants do not need to do that. If Citalopram is making you feel a bit numb and less alive and engaged, do keep telling your GP that - there are other antidepressants you can try.

Good luck.

Alison

As frustrating as it is, you should take heart from the fact you have more neuro appts. It took nearly 3 yrs for my dx and i felt exactly as you do. Like no ones taking you seriously. The more tests you have, the closer you get to a definitive answer. By the way, my symptoms started with tingly, numb toes. I can no longer feel my toes and specialist tells me the nerve damage is permanent so i have you get an answer soon

I hope your appointments with the Neurologists get you somewhere. I too am undiagnosed and in limbo!

I understand you completely. I have had chronic back and leg pain for over 3 months now, which I also get in my arms and hands but not as bad. I have also been unable to walk long distances/ losing balance/ unable to stand on my tip toes at all. I have been off work and no sign of getting better of figuiring out what is wrong with me. My MRI also came back normal, my blood test shows low vit d and b12 but the docs haven’t actually done anything about that other than requested I have another blood test in a month or so.

I am also feeling very low, unable to get up and do the littlest things… everything seems to big a task for me and I end up getting so upset over the little things.

Coming on here helps me cope, knowing I am not going through this alone.

I hope your appointments with the Neurologists get you somewhere. I too am undiagnosed and in limbo!

I understand you completely. I have had chronic back and leg pain for over 3 months now, which I also get in my arms and hands but not as bad. I have also been unable to walk long distances/ losing balance/ unable to stand on my tip toes at all. I have been off work and no sign of getting better of figuiring out what is wrong with me. My MRI also came back normal, my blood test shows low vit d and b12 but the docs haven’t actually done anything about that other than requested I have another blood test in a month or so.

I am also feeling very low, unable to get up and do the littlest things… everything seems to big a task for me and I end up getting so upset over the little things.

Coming on here helps me cope, knowing I am not going through this alone.

Hi Paul,

I share your frustation of having gone from active to struggling.

2 years ago I walked the full length of Hadrian’s Wall. 80 odd miles in a week. 2 months later I was in hospital unable to feel my legs properly and loads of odd sensations going on. Although most of the sensory stuff wore off, and pottering around at home and work I can walk fine, continuous walking of 30 mins or more gives me a left leg that drags, I stumble, lose balance and my speed slows to almost a shuffle. Long distances require a stick and sometimes a wheelchair.

I’m only 43 and have lost my main way of chilling out and getting away from the day to day stress of life.

But, and it’s a big but, I am still mobile. I can still get out and about. I still try to go for that “hike”, but where in the past I might have walked 10 or 12 miles, I’m only doing 3 or maybe 4 in the same length of time and I have to be careful on uneven ground so tend not to go across country as much as I would have done.

If I get really frustrated I try to tell myself not everyone can say they have walked from one side of the country to the other! Although I sometimes struggle to walk from one end of the street to the other now! But I still did it, This could have hit me 2 months earlier and I’d never have had that sense of acheivement.

It took 18 months to get my answers and I’ve only been dx just over a month, so again I fully understand the awfulness that is limbo land. It’s hard not to let the anger and frustration take over, but in the end it changes nothing. I have decided that I can either be miserable and angry or try to enjoy life as much as possible. I’ll still end up at the same place which ever way so I may as well get there laughing where I can.

Can’t promise I won’t have my down days, but hopefully when I do everyone on here will remind me I’m supposed to be laughing!

Morning guys,

Thanks you for your replies. They are all very helpful, and the more I find out about MS the more I find that it seems to be a many headed beast. I’m secretly hoping that what ever is wrong with me is something viral and it’s very slowly working it’s way out, but regardless of what the Dr’s i’ve seen have said everything is pointing to MS. If it is MS I want to know a.s.a.p so I can try and sort myself out whether it be with drugs or physio or anything else that may help. I know what you mean about uneven ground Shuffler, I become alot more unstable when working on uneven ground, some times I cant help think that it’s psychological.

It’s so frustrating that everything seems to take so long to get diagnosed though.

Hi,

I can understand your frustration, I have been having episodes since 2006 and after each one it takes something away. I was very successful in my role at work and it is looking like I have to finish, work is now treating me like a hot potato with no contact. But I realise its going to be for the best and I will look at doing something different with less stress as this seems to be the key to slowing down what ever we have. I too have clear MRI,s but coupling it with the permanent nuerological damage my Nuero wants to investigate further. He did say he meets a lot of people with simular symptoms with no explantion of what it is, so maybe the medical profession are going to have to do something different and find out what is happening. In the meantime its worth keeping posotive for the people round us who have to put up with us.

good luck in your quest…

Hello and welcome to the site Paul :slight_smile:

I completely understand your frustration at not being able to do what you used to. I was an international level martial artist a few years ago; I couldn’t kick my way out of a wet paper bag these days :frowning:

Saying that, it’s not all doom and gloom and I do plenty of other things. But finding alternative things to fill your time does rather require some get up and go and it sounds like you are not in the right mental place for that at all :frowning: I wonder if Alison has found the reason in that citalopram isn’t agreeing with you as it should? It definitely sounds like something to discuss with your GP.

Also wondering if the neuros you’ve seen have included anyone with an interest in neuromuscular conditions? Or genetic or metabolic conditions? If not, don’t let the current batch get carried away with how “interesting” your case is: keep pushing for new ideas from new people.

I hope you get some answers soon.

Karen x

HI,

I have no idea about if they have included people who have “interest in neuromuscular conditions? Or genetic or metabolic conditions?” To be honest im starting to think im incredibly lucky to have my neuro appointment so quickly after my MRI. From what ive read on here and else where unfortunately it can take months/years. My Nerve Conduction Test did register that my nerves were “not interpreting the standard signals as they should be” so maybe it’s not MS. That was the only snippet of info that I could get out of the EMG department, and that was me really pushing. As for metabolic disorders, apparently almost all of them can be exclusively ruled out from the negative results I have from my blood tests.

This interesting case thing is also tedious, initially they thought I had cubital tunnel syndrome which got worse, then my legs got dodgey and after I had my negative MRI the GP said “So, what do you want to do?”. My reply was “Get better, obviously”. I will be quite demanding with the 2 Neuro chaps I see next week because I really want to get to the bottom of it, and, there is no way in hell i’m staying on the Citalopram for any longer than 3 months. The GP said “when we all agree”, I was thinking, “No, when I find out what it is im coming straight off them”. They dont seem to realise I want to feel normal again, to be honest couldnt believe how easily to dispensed the prescription. Was a TAD easy in my opinion.

I think one of my main issues is my endurance has massively decreased. 4 months ago I could crank out 100 push ups in no time. Last night I did 40 and struggled to get up. When I read “exercise helps people with MS” it’s a flipping contradiction, like your body in conspiring to prevent you exercising! Like I said, it’s not yet diagnosed, but limbo land is the most annoying and frustrating place to be. Thanks for replying to my posts anyway, i’ll keep checking and obviously keep you posted on any developments.

hi paul

i’ve been dx for nearly 5 years.

what you said about hot baths making you feel worse, my OT told me to stop having hot baths and have a shower instead.

i really don’t mind it but sometimes i really crave a good long soak, last time i did i passed out!

carole x

The exercise thing is true, but it’s important not to overdo it or get overheated or dehydrated. Unfortunately it also means forgetting what we used to be able to do :frowning: For now, maybe stick to 30 press ups, but focus on technique and doing them really well? On better days, maybe do 40; on worse days, maybe 10 or 20, or just have a day off. The trick is to keep things moving, remind the muscles what they’re supposed to do. If this is a relapse, then remission will come along at some point and you may be able to gradually increase the press ups and get back to 100+. Kx

[quote=“c1991”]

I hope your appointments with the Neurologists get you somewhere. I too am undiagnosed and in limbo!

I understand you completely. I have had chronic back and leg pain for over 3 months now, which I also get in my arms and hands but not as bad. I have also been unable to walk long distances/ losing balance/ unable to stand on my tip toes at all. I have been off work and no sign of getting better of figuiring out what is wrong with me. My MRI also came back normal, my blood test shows low vit d and b12 but the docs haven’t actually done anything about that other than requested I have another blood test in a month or so.

I am also feeling very low, unable to get up and do the littlest things… everything seems to big a task for me and I end up getting so upset over the little things.

Coming on here helps me cope, knowing I am not going through this alone.

[/quote] I’m in the same vote as you I went and saw neuro failed heel walking test can’t walk on toes and he said all is fine but need to wait for head scan really don’t know where to turn now, I feel so helpless as my body feels horrid but nobody wants to help xx