Being diagnosed still -- have odd symptoms

["ET"]

Hi all,

 

I'm late 40's, and my doctor said I may have MS. I live in Beds, and am a teacher. I have very strange symptoms, but to me, they don't sound like MS.

 

Just wanted to ask if others have or had symptoms like these? No, I know you're not doctors, but still wanted to ask your experiences. I've been reading here, but there's so much -- this may be posted but I've missed it?

 

Buzzing: I get a buzz that will go down my leg -- the first time it happened I sort of jumped (startled) and looked around! I was sitting on the sofa flipping channels, doing nothing, really. It comes and goes -- I'll have it every day for a few weeks, then nothing for months. The next time it might be my other leg, or an arm, then it disappears.

 

Patchy goose-bumps: Also (this one is really strange!) I'll get what looks like gooseflesh (goose bumps?) on one arm, in odd patches. You could easily draw a line around them, the patches are so clear -- maybe 2-4 patches on an arm. Like the other, it happens for a week or so, then might not happen again for a few months. Feels really odd (which is what made me look at my arm and see them).

 

Pain: I get pain down my legs, but like the other symptoms, it just comes and goes -- may not bother me for months, then is back with a vengeance.

 

Numbness: I also have places where it's very numb (one area on my back comes to mind.

 

Mental symptoms: The worst is the mental symptoms -- I cannot do the simplest of tasks. Then when the confusion clears, I'm brilliant for months. I always dread the next go-round of it -- it's really hard to do my job sometimes (I teach upper school). Another problem that pops in with those is that I can't type during that time. The letters come out all over the place. They're all there, in different order and some between close-by words. It's horrid. Then when 'this' clears (whatever I have), I can type again! (I've been typing for 30 years, 65 wpm, so it isn't like I'm still learning!)

 

That's the bulk of it -- although there are lots of minor annoying things. Has anyone experienced anything similar?? Waiting is tough for me! (I'm of course not-so-secretly hoping someone will say, "No, none of those sound at ALL like MS!" Please?? Anyone?)

 

Thank you VERY much for your time, and I'll be doing more reading after this post.

 

Elise

 

EDIT:

 

Was just reading about the blue flashes, and also saw that the jerky-twitchy/wiggly vision can be part of MS ('oscillopsia'? or 'nystagmus'?). It drives me insane.

 

I've had severe vertigo a few times, too, and literally cannot stand up -- the room spins FAST, and if I try to get up I either vomit, run into the door, or both. SO I'm usually in bed for a few days then take an anti-vert medicine when it happens. Didn't realise this was also a symptom.

 

One more week and I'll have a yay or nay.

 

[Jayneanne]

Hi Elise

and to the group

I'm probably not the best of people to respond to your queries as I am not dx'd, although many of the signs are there, however I can relate to most of what you are saying. The goosebumps in particular (I had forgotten about that one) For no apparent reason they have appeared on one arm or leg at a time, though not for some time now. The typing also is a real pain in the neck as the fingers seem to take on a mind of their own and create anograms!

Like many of us you have probably been surfing for information. There is a wealth of experience and knowledge here on the forum, and everyone is more than happy to share

Best wishes

Jayneanne xx

[Marina]

Hi Elise and welcome to our forum

 

I get that buzzing sensation... in fact I've got a bout of it now in my right leg, makes going downstairs difficult and I have to go down one leg at a time. The first time I had it in my leg was just over a year ago and it shocked the life out of me too. I posted about it somewhere on the forum under "shuddering leg" (or similar).

 

Aha, the patches of goosebumps, I'd forgotten about that one! I used to get those all the time, mostly on my legs and I too found it really weird. Each one was roundish and about 1 - 2 inches in circumference. Never did know what it was but I now figure it's part and parcel of my symptoms. Haven't had for a long while though.

 

Pain... oh yes... I get lots of it... from dully achy pains to sharp shooting ones to burning sensations.

 

Numbness is a common MS symptom but can also be a symptom in other conditions.

 

The mental symptoms are fairly common too, aka "cognitive" symptoms.

 

As you may have read here in various places, many of us (myself included) have waited a long time for a diagnosis. It can be a long waiting game during which time all sorts of thoughts go through one's mind. There's nothing worse than the sense of uncertainty as it can lead to a fear of the unknown...

 

If your doctor thinks you may have MS, has he referred you to a neuro?

 

Do feel free to post away any and all of your concerns, there'll always be someone who'll jump in

[mayb]

Hi Elise Welcome to the forum - you have joined early on in your experience of possible ms and you will find a wealth of support here.

 

I thought I would jump in because I also live in Beds, worked in a classroom for 9 years at lower school. as a Specialist Teacher's Assistant in the later years as part of the numeracy literacy thing. and had a very similar experience of strange symptoms as you in the beginning. So felt an immediate empathy with you on that.

 

I thought you might like to know that my first experience was loosing the feelings in my left arm for days - then numb patches on my back then pins and needles just about anywhere then a sort of total colapse one day when I 'lost' one side altogether. The typing thing I recognise but have decided it is due to one hand responding faster than the other. I touch type and so will press all the right keys without looking and then find many of the letters have reversed. Thank god for the computer as this can all be corrected afterwards. I had none of the patches of goose bumps - do they itch? I had one patch on my spine which resembled a cigarette burn that nobody could explain to me. It just went away and never returned. I can burn myself on my hands and not feel it at all.

 

The reason I am telling you this is that I was sent to a neurologist after a collapse at work but 13 years and many odd symptoms later, I am not diagnosed and have been told that, even if I was, I would probably not receive any treatment because it has had a fairly benign progress for so long. I am 53 now and still hanging in there.

 

One of the things I do know from experience is just how stressful teaching is these days and that cannot be helping you much at the moment, besides the stress of wondering what is going on. I think everyone here, diagnosed or not, would agree that stress and stressful incidents are the trigger points for symptoms to appear or get worse. You really should give yourself some time out when your brain 'hurts' and perhaps you could suggest 'a migraine' to give you that space to be not well. Knowing you can give yourself a let out sometimes avoids the need for having one.

 

I have no idea whether I will ever be diagnosed with ms but have recently been diagnosed with something that is apparently causing the current problems with my leg and am now dealing with that. It is never over until the fat lady sings as they say, so be strong and hopeful and with good luck and a fair wind it may never happen. Whether it does or not you will find, as I have, a powerful welcome and huge support from everyone here - not to mention a bit of a laugh too.

 

My fingers, legs and eyes are crossed for you!

 

Mary

["ET"]

Oh, you're lovely to post back so quickly! Wrong answers, though ( ) -- you were supposed to say, 'Nope, no MS symptoms in your list!' but you know I'm joking, right?

 

Yes, he's made a referral to a neuro, but I don't have the date yet. He said it may be a while (I don't have private insurance, and we all know the NHS).

 

Yes, the typing is so weird -- completely different words will come out on the screen! It's almost hilarious, but no, not really!

 

The goose-bumps thing has gone on for years, but I just always thought it was a strange thing . . . interesting to hear that others know what I mean.

 

I've only just begun to read about MS -- the doctor just told me this past week what he suspects. A bit upsetting, but my symptoms have been going on for year, and are still not too bad (the mental confusion is the hardest to live with), so if this is as bad as it gets for me, I'll be okay. Know what I mean? I guess I mean compared to a woman I work with who is very young and quite disabled already. I think of te decades she still has to live, and is progressing rapidly. Mine seems

'slow' by comparison.

 

Off to cook some lunch, then try to put together a desk I just picked up at Argos. THis should be a really fun time (oh, I how I despise flat-pack!).

 

Thanks again, all,

 

Elise

 

P.S. I LOVE all your emoticons! Too fun!

["ET"]

Mary -- oh, another Beds! Hi!

 

I like that idea -- migraines. Thank you! I did take Friday off, just feeling really tired, and yes, teaching is a high-stress job in the best of times. I'm looking at getting out of it in a couple of years (have a few things I have to do first, to pave the way for something new). Upper school is a nightmare.

 

No, the patches on the arm don't itch or anything, and they disappear in a few mnutes, only to reappear later, again, for a minute or two . . . odd. You just feel the skin sort of tingling or something? Hard to explain.

 

 

The typing -- yes, I often get the 'one hand types faster' thing, but the really bothersome one is entire words which are different. They might start with the same letter, but that's where the smilimarity ends! I might want 'difficult' and 'detergent' comes out! It's so stupid!

 

You all seem so nice, and positive, and friendy! Thank you ALL for being here -- hate the journey I'm being taken on, but it could be worse without a support group.

 

Best to all,

 

Elise, or you can call me ET (English teacher), but I'm not the 'phone home' kind of ET.

[Michelle]

Hi Elise and Welcome to the forum

I can answer yes! to all your questions Maybe not the answer you wanted - but at least it's an honest reply O'er the typing I have terrible trouble. I am amazed at the words that sometimes come out on screen. As a rule; I tend to double check what i post. Thank goodness for the edit button.

Regards

Michelle

["ET"]

Hi MIchelle,

 

Thank you for the warm welcome -- I'm just reading LOTS right now, and tying to learn about this. The board and the members seem so fantastic. Nice 'home away from home.' (Do you actually have over 1,000,000 posts, or do I not understand that 'thing' correctly?)

 

Elise

[Michelle]

I do have all those posts I am such a chatter box

Michelle

["ET"]

Can I ask a question? I've seen a few mentions of the Best Bet Diet, and want to see what it is, etc -- is there a place that it's posted? I'm not finding it, but just seeing mentions of it. (Does that make sense?)

 

Thanks in advance for anyone who can point me in a direction.

 

Elise

[Michelle]

http://www.msrc.co.uk/index.cfm?fuseaction...FTOKEN=87882322

 

The key elements of diet revision for MS are:

 

Avoid all dairy, grains, legumes, eggs and yeast.

Avoid all allergenic foods which are identified by skin and ELISA tests.

Avoid all red meat and margarine

Eat fish and skinless breast of chicken and turkey, for protein fruits and vegetables for carbohydrates and micro-nutrients and extra virgin olive oil and unrefined sunflower oil for fats.

Take as many of the 17 recommended supplements as your budget allows.

This diet is essentially a "Paleolithic Diet" (Eaton and Konner, 1985) and is the one which our genetic structure evolved in concert with over 2 million years. Thus it is very compatible with our genetic makeup and results in few if any biochemical failures.

More info can be found in the diet and exercise section.

Michelle

["ET"]

Oh, lucky me -- this is almost the way I have to eat now.

 

I have coeliac disease, so all the grains are out automatically. I also have dairy intolerance.

 

That said, I do LOVE my red meat, and use a non-dairy margarine. I also am guilty of eating the crispy chicken skin (roasting one as I type this!).

 

I do go to my farmer's market twice each week, and bring home an entire trolley of fresh fruit and veg, and devour it all before my next trip . . .

 

So, I'm mostly good, but a few bad habits to break. Hmmm. Now it makes me wonder if the reason I have such mild symptoms is my diet. because I can't have grains or dairy. Was treating this (if it is MS) all along, unknowingly? (The doctor believes it's called something like remitting/relapsing? Comes and goes? I have maybe 4 episodes a year, on average.)

[mayb]

OMG! I have just eaten the worst meal ever according to that diet - spaghetti bolognase and garlic bread. Must admit this was more for my husband than for me as I often don't have anything with wheat, as it bloats me and makes me feel uncomfortable for hours. I am really fed up at the mo and I couldn't be bothered to eat sensibly, so had some of his. I have a feeling the day might end with chocolate- lots - I will take off the wrappers first - well maybe not!!!

I promise to look at it tomorrow - the diet that is.

[Gaynor]

Hi Elise and welcome from me too

 

I get the pains in the legs, but they usually go with rest and de-stress!

 

I'm an 'ex' Nursery Nurse' ( RRMS dx's Jan 05) and have worked in schools (mainly with special needs pupils) under the class teacher and YES they can be stresssful places just as much as they can be rewarding places too of course.

 

I am not working at the moment and luckily I'm in a position where it's not a necessity....which I am grateful for, although I do miss 'having a job'.

 

Nice to have you onboard here,

 

Gaynor

["ET"]

  I have a feeling the day might end with chocolate- lots - I will take off the wrappers first - well maybe not!!!

   

I promise to look at it tomorrow - the diet that is.

I just went to Sainsbury's and got some GF/DF (gluten-free/dairyfree) chocolates for tonight. Bad, bad . . .

 

I am unwrapping them, though! Hate that look of green foil all through my teeth. Attracts stares. Well, maybe not in Beds, but if I went out of the county.

["ET"]

Hi Elise and welcome from me too

 

I get the pains in the legs, but they usually go with rest and de-stress!

 

I'm an 'ex' Nursery Nurse' ( RRMS dx's Jan 05) and have worked in schools (mainly with special needs pupils) under the class teacher and YES they can be stresssful places just as much as they can be rewarding places too of course.

 

I am not working at the moment and luckily I'm in a position where it's not a necessity....which I am grateful for, although I do miss 'having a job'.

 

Nice to have you onboard here,

 

Gaynor

Teach upper school -- 90% stress, 10% rewarding. I do love it, though, and the kids all ask to be in my classes, so I'm apparently doing something right (and not letting the stress show?).

 

But it's an 80-hour a week job, I worked 70 hours over the Hristmas break, the full half-term break . . . it never ends. Two more years, then I'm going ot try to work in editing and publishing full-time.

 

Thanks for the warm welcome -- you're all so nice here!

["ET"]

Oh, crud . . .

 

Just looking at lists of symptoms (something I'd avoided!), and the reality of this is hitting. Hard to deny. The eyes jumping all over and I can't read or do things, the legs that wake me up when they jump at night . . . (It's funny, when you have these things and think everyone must? I had said to my daughter recently, "You know when your legs jerk really hard and wake you up at night?" She just stared blankly. "Um, no, Mum . . . " "Oh, stop it -- you know what I mean!" "No, I really don't." Then you begin to realise that what you thought everyone has, is just you!

 

Anyway, the list is a little too close to reality for me, including the one I just noticed, that the heat makes things worse. In heat, I just get so ill and weak. I keep my classroom so cold in winter that the kids complain, but I can function that way. And last year I traded rooms with another teacher, so I'm now on the north side and she has a south-facing classroom -- the sun beating in makes me so ill. A swim in a heated pool is equally bad.

 

Oh, I almost wish I hadn't looked at those symptom lists. Well, better to know and prepare, right?? I guess it's just the shock of this that makes it tough right now -- I've lived through far worse, so this will be nothing once I adjust. Right? Hopefully!

[Gaynor]

No Elise, I have to say hats off to you for working with the older kids!!! That is hard.

 

At least they want to be in your class though

 

Gaynor

["ET"]

No Elise, I have to say hats off to you for working with the older kids!!! That is hard.

 

At least they want to be in your class though

 

Gaynor

The kids are so funny, though.

 

Last year I was out for 3 days with flu. When I came back (still very ill), they came rushing into the room; "Miss. we thought you'd quit and left us!" (We go through a LOT of teachers, some positions change teachers every half-term.) Anyway, I told them I hadn't left them or anything.

 

Then it got funny: "MIss,. we had horrible cover teachers. One of them was SO racist!" "Really? What happened? What did you guys do to her? What did she do? What HAPPENED?" "Nothing, Miss -- you know how those people are. They get offended about anything!" (Right -- who's being racist?!? They have no idea, do they? Saying 'those people' doesn't strike them as wrong! Oh, youth.)

[Heste]

Delighted to meet you Elise,

 

Welcome to our forum and welcome to Limbo land. You are not alone there.

 

Keep us informed about your symptoms and how you get on with the neuro. You will have lots of questions and we hope we can help you answer them. Feel free to ask anything. There is almost always someone around to help out. Equally feel free to offer any advice you might have for others.

 

Regards,

 

John

[mayb]

Hi ET I can sympathise with you on the list of symptoms issue. I first awakened to the fact I could have MS when I read an article in a magazine entitled 'What to do if you don't have a diagnosis' or something similar. Anyway I read the bit about MS and went hot and cold all over. So I rang the MS Society helpline and spoke to a lady there thinking that she would tell me that I couldn't have MS - but no she appeared to think the opposite. I sat on the bed and just burst into them and I was so shocked. It was then I went to the GP and asked what was going on and was told that I was probably in the early stages but they just didn't know - I was angry and upset that nobody had actually said this before. As I said I still don't have a diagnosis of anything.

 

Once you get over the initial shock you go into a sort of mourning phase - well I did - you aren't the person you thought you were, your body has let you down, you have lost something you took for granted etc. After you get over that you start to fight back and to acknowledge the things you can do etc. You sound as if you are already thinking that way because you have joined this site. But if you do go on a downer then there are always people here to help you pick yourself up again.

[Shirl]

Hi Elise, to the forum, you've already met some of the bunch!

 

I was also a teacher, 'retired' at 41 when MS had it's wicked way with me. I had several accidents in school and the treasury doctor had no option but to suggest early retirement.

 

I was not formally dx until this year but that is really a Post Code story, as happens in our modern, caring NHS...that's too cynical for me, as happens when a Neuro cannot get the results required and will therefore not ratify a clinical dx from a GP who had the sense to see it was obvious MS was the reason for troubles that ailed me.

 

I have read quickly through your posts and, not being on top form, needing my bed, will simply say - yes, I too cannot tell you I don't recognise your symptoms. You are taking a level-headed attitude to come-what-may. This is a good place to come with all your worries and when you just need a friend.

[mayb]

I just had to pop in here and tell you shirl that I was about that age too when I changed jobs to a 'sit down' one. My GP has always treated me as an MS possible as she and then he was aware that my sypmtoms had been given no other explanation. They see you during the difficult times whilst the neuro possibly sees you when you are well, or at least better. I am still having that trouble at 53 - symptoms say one thing - MRI and neuro say another. Being in the NHS - this is my neuro not of choice. Other neuro's - 2nd opinion and private - maintain that I may well have MS - this one laughs at such a suggestion and 'who told you that' he snears. You just have to admire his lack of bedside manner - he really must work on that.

 

Sorry Elise - not trying to depress you - but at the same time it is best that you know that the path to a diagnosis is not always a smooth one. That is why it is so good that you have found this site. Wherever you are going there is someone here to support you. You may not feel lucky if you get an immediate diagnosis I know - but the other route is not an easy one either.

 

Like good girl guides and scouts - be prepared and please do share it all with us.

 

I hope you feel better soon Shirl I miss you on the site - as everyone knows you are always and most definately a friend in need.

["ET"]

Sorry, haven't been on here i a while. WOrk takes over my life (and geting some sleep as well!).

 

Thanks to everyone for all your support and understanding so far. No, I don't think I have any advice to offer at this point, but if I ever do, I'll throw it out there. Meantime, I'll be reading and asking questions (hopefully nothing too foolish!).

 

I'm just mostly SO happy that this forum exists.

 

ET