Tell me this will pass (please). Sorry, I know it's self indulgent but if you have had legs that feel like jelly when you stand, does it go away? How long?.

[FluffyBunnyGoneBad]

I started a thread under my pre-easter name, I had a cold/stinging sensation in my face which is very slowl going, however, since Monday my legs have been erm, well, they feel wobbly when I stand/walk, like I'm on stilts and they are like set jelly. It's not all the time though. I have been to the GP, I wanted to go back to see a useful one but couldn't get an appointment so will try again next week. I don't need to know what it is as I have a good clue, I just need to know if it will pass so I can walk normally without feeling like I have no control over my legs.
If I went to A&E tomorrow with this would they tell me to go and see my GP?
Sorry if this thread sounds odd and self indulgent.
TIA Scrooged.

I agree with you i was at deaths door one minute and bette the next but I didn't feel safe iykwim.I really hope you get some answers.I stopped sleeping and once that was sorted the symptoms started to ease.I still get 'episodes' if I'm stressed or tired but rarely

Thankyou. It's a science though isn't it. They do get things wrong/miss things/not know. No ones perfect. This doesn't help the patient though.

Hi Fluffybunny,

you are right that your symptoms do sound like MS - but others are right that there are a lot of other things it could be too. The problem with neurological conditions is that, tbh, it's not an exact science. diagnosis with ms is through a combination of tests and symptoms. the MRI does show up demyelination - an area of demyelination is called a sclerosis - which just means scar. so, obviously, for them to call it multiple sclerosis you need to have more than one. You also need to have had sufficient symptoms. my case is a classic example of the rather messy way it's diagnosed - not because the docs are idiots - but because not a whole lot is known about it. in 1999 I had various ms-type symptoms, I had an MRI and when I discussed the results they said there was some demyelination - which could have been caused by anything - a virus for example - and it wasn;t anything to worry about. less than a month later I developed more symptoms, went back again and then they said it was MS. My symptoms had reached a level such that what was once just a bit of scarring and nothing to worry about was now called MS.

I'm sure you've been googling and reading and know that MS is hugely varied - it's not a very nice diagnosis - but, as you point out, there's a whole lot of much worse stuff. I was very ill in 1999/2000 - but since then I've only had a couple of mild relapses and this year I'm running the marathon and I rarely even think about the fact I have ms.

The other problem with MS is that they;ll never tell you anything about the future - eg how long symptoms will last - they honestly just don't know. It's very infuriating. I've often had stupid niggly things that if I knew they were just going to get better in a week I wouldn;t worry about - but not knowing in pretty unpleasant.

What you might find - if (and please remember that it's still an if) it's ms that your hospital has an ms nurse - they are often more informative and helpful than neurologists - they;re not doctors but they know what's what - they have a lot of contact with a lot of people, are aware of available resources, info etc - so macke sure you find out if there is one.

Have you got an MRI appointment? There's probably nothing you can do except sit tight and wait. Keep a diary of your symptoms so you can give the docs accurate answers - and try not to worry. I know you will (I;ve been there, and it's no fun at all) but do try. cat me if you like - I often miss stuff on mn these days - but I'll keep an eye on this thread to see how you;re doing. bye for now.

Thanks Hatwoman.

I have not managed to get a referal from the GP yet, they assume I have post viral fatigue from a virus I don't think I had. I had a slight positive blood test for glandular fever, no fever, no sore throat. One GP I saw thought it was a false positive. I know there's alot of symptoms, all with different causes and it's hard to diagnose. I did go with the post viral fatigue diagnosis as it's what the GP thought, the symptoms are almost the same. I do have some medical training, I nursed for a couple of years before becoming ill, now I'm a student radiographer so I think a bit of knowledge can be a bad thing. I don't know if the GP who mentioned the possibility of lesions said this as an off the cuff remark IYKWIM. I'm just hoping the legs get better, it's an odd sensation. I'm going to try and make an appointment tomorrow (again)

Thankyou for replying

I've had the exact same wet sensation btw - it's very disconcerting. I get one that I can only describe as feeling like I'm wearing wet woolly socks. most odd. I expect that they're being reticent about the MRI because it's very likely that whatever it did show wouldn't actually change what they'd do about it. I think i was lucky (?) because I was pg at the time - and my gp was freaked when she tested my eyes - she asked me to cover my left eye and asked if I could read the 4th line down on the chart. I had to say "erm, I can;t even see the chart..." at which point she called the hospital and had me go there straight away. iirc that was a Friday and they did the MRI on the Monday.

keep plugging away - you do deserve decent answers. take care

I thought I'd pissed myself! (not that I would know how it feels) It was um...interesting, going down my calf, into my foot. The face was the worst, cold one minute, then burning but normal to touch. It was stinging but the stinging is alot less now. The eyes are hazy but I can see. I did get my eyes tested last year and was given glasses but they are exactly the same when I wear them as when I don't so it was a pointless expense. I know one will pull his finger out. I just have to get an appointment. That's a task in itself.

Thanks.

good luck getting an appt with Good GP this week Fluffy/Scrooged!

I saw your other thread fluffy. so it wasn't bell's palsy after all apparently. I noticed someone else said MS and tbh that was the first thing that came to mind when I read your OP. Please push for an evaluation and an MRI. You know there's something going on and they need to do a thorough work-up on you.

Any luck with GP?

Hi I saw a different doctor, he did some reflex tests and said they were fine, the muscles in my legs were a bit weaker then they should be though. He said he thought it was a virus as my throat was a bit inflammed and to go back in two weeks if still the same or before if there are any other problems. He said he's send me off for some tests if it didn't improve or it got worse so I'll see how it goes.

Thankyou all for caring, I'm really touched by this.

Hi That sounds like a very positive step forward. Good to see a dif GP and get a 2nd opinion and to have a good check over. Let's hope it is some sort of virus and it sorts itself out now, but good to know if things don't improve you can go back to him and he will get more tests done. Did you say you are worried about MS and if so what did he say?

Was meant to be an encouraging not a manic grinning thing!

I didn't mention the MS. I saw him ages ago with strange tummy problems, he said my symptoms are always odd so I thought I'd let him make up his own mind. I'll leave it and see how it goes, then go back if there's any more problems. He's alot better then the other GP. At least I know I need to strengthen the muscles in my legs now. This should help with the jelly legs.

It's encouraging! I can't take anthing seriously with the buny ears though

Hi Fluffy, you could be me with those symptoms. I am undiagnosed.

I am waiting for my latest MRI scan results. I've had what was diagnosed as "Bells Palsy" at least 3 times in the last couple of years because of my facial symptoms, and I have regular falls too because of the wobbly legs. I have had an equivocal diagnosis of either an occular migraine/?optic neuritis when I went to eye casualty because of the persistent stabbing pain in my eye. The most painful thing for me is the muscle spasms, especially when they are round my ribs and chest.

I hope that you manage to get somewhere, as it's taken 4 years to be taken seriously for me. They thought I was malingering because (lucky me) I had a car crash a few months before my symptoms started, and they assumed that I was making it up to get compensation. I wish I was making it up!

There is another possible diagnosis you may want to look into. There is an auto-immune disease-Hughes Syndrome (also known as Antiphospholipid Syndrome) which can cause very similar symptoms. In fact it has often been misdiagnosed as MS. Have a look at this website for more info www.hughes-syndrome.org

Hi again - just wondered how you are getting on - any better? Hope so.

Sorry, it's ds's birthday today so I've been off for a few days. My face is alot better, my legs are still a bot jelly like though, I have a sneeky suspicion that my iron levels are low as the bit inside my eyes are white, not red so this could be the culpret. I have fibroids anyway and periods are heavy so it could be this. My GP gave me some iron tablets ages ago 'just in case' , they have side effects though. Ah well.

I really do appreciate all of your help and support. / Hughes syndrome sounds nasty. I did have a look at the site, it must be a nightmare for doctors as so many conditions have the same symptoms. It does make it worse when they think you are malingering, I suppose there are so many people after time off work etc, no one knows your body like you though deepbreath. Occular migranes do sound evil. It must have been so hard for you to get someone to listen though.

Happy easter.

Sorry this has turned into 450 words but there?s a lot to say.
You?re symptoms, as most people say, could be a number of things, neurological or otherwise. That doesn?t help much I know. Anyway, I have MS and have been diagnosed for 14 years although it was suspected for a further 7 years. One of the things I did was to go to an osteopath who I knew was also a qualified doctor. He saw me only twice then wrote to my doctor and said I should see a neurologist. I did and he say me twice but did little other than grip test and a balance test. At the second appointment I was much better so he discharged me without further investigation. Then a couple of years later I developed painful eye symptoms so was referred to an ophthalmologist. She did a CAT scan and apparently decided I had MS and told my GP but said he wasn?t to tell me!!!! He was a bit disturbed about this so kept asking me what I thought itw as so he could address unlikely worries. So when I said brain tumour he explained why it wasn?t and so on. Eventually I went to him and said ?I think I?ve got MS? he said ?yes I do too ? !!!!! I couldn?t believe it then he told me how the ophthalmologist had told him not to tell me. He then referred me to a neurologist and told him I should give the history as I?d know better than him. I saw him and he did a full clinical examination then said nothing was clearly identifying MS but he?d send me for an MRI. When he got the results he nearly fell off his chair. Yes I was right I had MS

I think the not knowing is much worse than whatever the answer is because then you can start looking into what things you can do yourself. It is NOT a passport to a wheelchair and now that many drugs are available on the NHS and continue to come online things are looking up.
So to recap, try seeing alternative people like osteopaths and chiropractors. You may have to pay a small amount of money to do that. Or even pay for a private appointment with a neurologist. This will maybe cost 100-150 pounds. Of course if he then wants to do an MRI it would cost say £1000 but he may be able to transfer you to his NHS list (a lot of them have one). Spending money may seem unnecessary but when it was me it was worth it not to wait any more.

Good luck with finding an answer
Kath

Thankyou Kath.
I went to see my dentist incase the cold/burning in my face was dental related. It wasn't but he's referring me to the hospital so I can get some tests done (hormones etc, the consultant can send me for an MRI if he needs to) so I'm waiting fr an appointment. He didn't seem too impressed about my GP so it's down to waiting again. It seems like an odd way to go about things though. Everything's still the same, my legs are more off and my calves are starting to sting. Balance is quite bad at the moment and have the bruises to show for it.

It's really weird that they didn't tell you. Did you take it further?

FluffyBunnyGoneBad I saw your other thread but didn't post.

I just wanted to say that in 2005 I had symptoms almost identical to yours. My legs got rapidly worse until I could only walk with the aid of crutches, and that is only because I refused to use a wheelchair. My sight was terrible and I suffered from eye pain. I had a numb but tingly feeling in my arms, hands and face, a bit like pins and needles but not normal pins and needles. I suffered from incontinence too, I was in a right state!!I also had the feeling of cold water running down my legs and occasionally I would get this tremendous feeling of pressure around my torso, as though I was being hugged too hard.

My doctor suspected MS and sent me for all the tests and scans. They all came back negative for MS. To cut a very long story short I was referred to a gastro consultant after a lump was found in my stomach and after telling him all about my symptoms he suspected coeliac disease. I was tested and the result was positive. He told me that eating gluten was like taking in arsenic, that it was slowly poisoning me. I cut out all gluten and felt an effect after only ten days, I had been living with a kind of brain fog and unable to concentrate and focus on anything at all, that was the first thing to lift. I was also suffering from a terrible depression which also started to lift. After a few months I felt like a new woman, I felt reborn and happier than I had in years.

I do still have a few problems with my balance and coordination but that I can live with.

So, please try not to worry, it may be be MS you have, it could be something that is easily sorted. I know how worried you must be feeling though, I went through hell. I hope you get an appointment through soon and manage to get sorted. I am thinking of you xx

Thankyou. I've done the gastro route so I know I'm not a celiac etc. I'm not worried but it would be nice to know I'm not a hypochondriac. Bad isn't it!

thankyou.

I really feel for you. I cut my very long story to a very short one but I saw so many horrible consultants that, just because the initial tests came back negative, implied that I was a hypochondriac. TBH with you, some days I still do believe that I have MS, when my legs feels like lead weights, so much so that I have trouble lifting them. There are a few little niggles that I still have but I refuse to go through all of the tests and the patronising comments again. I avoid my GP as much as possible too, but he is lovely and understands why. I have told him I am taking responsibility for my own body, thank you very much! and he admires me for this.

I hope you get some answers soon, I really do but, I can't help but think that if you are anything like me it will be a long long time before you do.

By the way, I paid private to see a neurologist. It cost £120 but it was pointless really. It was a consultation and examination but because we couldn't afford to have all the tests privately I had to wait for NHS appointments anyway.

I went to see someon else this morning as I now have pins and needles in my feet, she's faxed off an urgent referal for me to see a neurologist so I'll see how long this takes.

Thankyou. I know what you mean about feeling like a hypochondriac. I had a kidney stone a couple of months ago, I was so happy when the x-ray proved it was there. Sad eh!In the US they do diagnose MS in the absence of signs from an MRI. I do think that the symptoms are very similar to ME though so maybe there are people with MS who have been diagnosed with ME??

Hi. I've just read all of your posts, and recognise the battles you are going through. I think the problem with GPs is they only look at one symptom, try to solve it and don't look at you as a whole.

16 years ago I was diagnosed with ME. I was always tired, sick, dizzy, aching, odd extremes of temperature, gastric problems etc etc. I haven't worked for years, but am not ill enough for any sort of benefits apparently. Recently I was watching TV and they mentioned dizziness in supermarkets being caused by labrynthitis. Sure enough, after balance tests and an MRI (after I begged GP to refer me to a balance specialist) it turns out I have no balance function in my left ear and limited function in the right. I feel vindicated that I have been ill all these years, not a hypochondriac, but also sad and cross that no-one listened. There is no easy answer to my problem, but at least I know I'm not going mad!

Anyway, all I was wanting to say was that you're not alone. You do know your body best and need to keep pushing for more answers, from specialists, not woolly diagnoses from part-time GPs. But I also know how much energy it takes, when you have little energy in reserve I wonder if any MS charities have a helpline for advice?

Hi
I managed to get an urgent referal from the GP this morning so I'll see what happens. I do find it really annoying that they put everything down to ME. I have a friend who used to have depression, every time she went to the GP because she was unwell it was put down to depression. She has severe anaemia which was not diagnosed for ages because they put her symptoms down to depression. I do go back and try to see another GP in the practice if I don't feel listened to. I don't think I have ME, I don't think I have IBS, I also don't think I had Glandular Fever that started it all off, there was no fever, no sore throat, no enlarged glands, just excessive tiredness and a shooting pain going across my back. It has never matched up, you tend to listen to them though don't you.