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symptoms getting stranger ..MRI.. inconclusive white spots, lumbar puncture next

Firstly how do you find a post that you previously left on here?? I posted one other post a couple months back.

Hi, saw neurologyst yesterday for results of MRI, he said i had and i could see lots of little white spots on left hand side, more so to the middle and bottom. he asked me if i had ever suffered with miagrain in the past, i had hardly ever had headaches in the past. He said i would need a lumbar puncture. Dose anyone know what other condition it could be? as the info ive looked at say that ms white spots are more arched shape or longer. Why is it you dont think to ask these questions untill you get home from appointment…

One set of symptons that i didnt think were related (only mentioned them as were going on at the same time) turned out not to be, i already have two protruding discs in lower back and now have another in my neck :frowning: and bloods came back that i have a boarderlline underactive thyroid, but he said that dosent explain symptons. Has put me on amatriptoline which ive taken in the past for my back.

Just wish i knew what it was, some of the symptoms are getting a bit scarey.

Thanks x

Linda, try not to stress, I know it’s impossible to ignore everything going on but do your best to relax as cetainly, for MS stress isn’t good :frowning:

I’m not the best person to advise as I didn’t even really know what MS was til my neurologist explained it to me!

But, I’ve certainly picked up from this part of the forum that some people do have lesions that are not caused by MS. As I don’t know your symptoms etc I can’t be much more help on that but I’m guessing MS is suspected if LP is the next step(?) I do know there’s a criteria to be met to diagnose MS (search McDonald criteria if you wanted more info on that)

Good luck though and try not to stress, there’s always support here… even if my knowledge is a bit rubbish, I can still send you a hug

Sonia x

Hi Sonia, thanks for reply. I did do most of my stressing several weeks back lol, im not really one for stressing, its frustration more than anything, but thats on a slow simmer at the mo :slight_smile: Some symptoms are the norm. pins and needles, numbness, memory shot, crawling under skin, fatauge, shooting needle pain, slight hand tremors. Was walking down platform at station last week and i noticed i was going at an angle to the right, was two steps away from the track before i realised, had to stop dead still and side step to the left as i didnt trust myself to correct my line of walking as i had something simular at start of year, when i took a step to left to correct i went even further to the right, lucky i was in the field walking the dogs at the time. And some other strange stuff, sitting in bed reading when all of a sudden i felt a mini explosion in left side head, only size of a pea, but excrutiating, but time i opened my mouth to scream it was gone, but then felt pins and needles from that spot and down side of face, was also woken one night and felt like my whole boby was being electrocuted, only my head and feet were on the bed with my back arched up, was agoney, couldnt move for about 30 secs. Two a4 pages of symptoms in total that i handed to my neuro, he has ruled out brain tumor so thats a plus :slight_smile:

I dont even know if he suspects ms, hes not very forthcoming with words, i didnt want to say that i had done a little (lot) of research myself incase he thought …omg another google junkey, self diognosing hypocondriac. While researching i have ruled out several other diognosis (includding brain trumor lol)

I did look at Mc Donalds yesterday, thats what has made me dought ms.

Sorry for going on so long, first proper conversation ive had on ms, i take it you have had a diognosis?

Linda xx thanks for the hug…hug back x

Linda I’ve had a flare for 6 mths lesions on the brain and spine, had evok test but neuro till said wanted to check with LP , now this has come back showing inflammation but not conducive of ms. Now suspect something else. I know this doesn’t help you but just wanted to say I have lesions that they thought was ms Take care Gray xxx

I’m undiagnosed with 3 brain lesions, but I can’t have a lumbar puncture due to also having a blod clot. I am also off work, in pain and scared. It is frustrating all this waiting but it’s all we can do. I have learned to write a list of questions I want to ask before any appointment as otherwise I always forget something. I know what you mean about not wanting to mention what research you have done. I agree that consultants/doctors can get cross about this. Good luck with your diagnosis whatever it may be.

Hi Linda

Yes, I’m diagnosed but I never saw it coming.

In my naivety, I thought I had a trapped nerve, seriously! When the spinal unit referred me to neurology without telling me results of my MRI, I was in such a panic, so I was banned from googling it… I snuck a look at Ataxia as I’d heard of that and thought that might of been it… I didn’t realise that was just a bit of it. lol

Every week I went to the gym and taught my classes and only took a couple of weeks off when I had trouble standing after a bath (yes, I couldn’t get out of it!) and then I had my neurology appointment and he told me the and there that it did appear to be MS - after he’d examined me obviously and that was cringe-worthy, I almost fell over and stumbled a bit during my exam.

Well, you live and learn eh, I now know I’m far from invincible! And I’m now living a tad more of a quiet life, without the inolvement of my gorgeous high heels :wink:

Take care and talk away Linda, I’m pretty sure this is the best place to do it!

Sonia x

Hi Gray, what is evok test? Thats a bitch, it must be so hard when your hoping for answers and keep geeting none. Have they suggested any other tests?

Ninadancer, I thought I had a trapped nerve too! Wishful thinking eh?

Hi Linda, your consultant should have told you why they were recommending a lumbar puncture.

My consultant explained everything to me, all the tests, the reasons for them, what she was looking for, what she needed to rule out etc. I started to keep a diary and also use it to write down questions when they pop into my head, I take my diary to appointments and write down what was discussed (I even asked my consultant to write in it for me when my right hand refused to!).

The MRI scan is very detailed and will identify things you would otherwise have never known. My MRI showed a slip disc in my neck and a bone island but not severe enough to cause my symptoms. My first MRI was to check for a brain tumour so when I was told I didn’t have a tumour, I didn’t really listen to what else was said about lesions etc. Since then, I’ve made sure I write everything down. Take care xxx

Sonia - I’m so glad soneone else is missing their gorgeous heels!

Hi Pudding, lol. ohh thats not good, cant they do another test other than lp? agree the worst part is the waitting and wondering. Yes that one bit of advice i would give anyone is to look up the kind of questions to ask, my first app. with neuro was so quick after i went to g.p.(4 days) that i wasnt prepared and second app. i didnt know what the result would be and what to expect, am prepared now. Am waitting for lp app. and have next neuro app. 5 Dec. I so get the not remember bit lol,i keep a note pad by my pc, kettle in kitchen, bag and by bed and have been jotting down all symptoms and will now do questions also. I do hope they find a way to give u a definative answer. good luck also x

AvrilD, didnt like my neuro from the first time i met him (only twice), very Harow school boy, up his own rear, i felf as if i was casuing him an inconvienience being there, and was considering asking for another consultant. Is it a constant proplem with your hand? have had weekness with my left, but can still write. My mri also showed a bulded disc in my neck (new) and that i still had the two in my lower back which ive had for 8 yrs

SONIA and AVRILD and anyone else …heels…i wouldnt even think about heels now, have you ever had or heard of (must admit its mostly when ive had a little tipple or very tired, but only in the last few months) but have u ever noticed that your toes grip the floor, like they’re hanging on for dear life when walking? am unsteady when turning corners and when lean over (without alcohol :))

thanks for reply. good luck yourself x

Thank you ladies! I’m terrible, I actually had a passing thought that maybe I could handle heels with my crutches… yep, STUPID idea BUT cannot let go! xx

How amazing, I thought I had a trapped nerve initially too, and as for my heels…Yes, I miss them terribly…:frowning:

Hi Linda, my consultant is very approachable and friendly. There has been times when I feel a little rushed, but, I don’t leave the consultants room until I’m satisfied and completely understand whats been discussed.

I don’t know if you feel confident enough to tell your consultant how he makes you feel or if you can take someone with you tohelp you have more control during your appointments.

My handwriting can become so bad I can’t even read it myself! I also struggle to move my fingers in my right hand, they become very tight, some days are better than others.

I hope your next neurologist app goes much better than the last one xxx

Linda, there is a thead here about CIS (clinical isolated syndrome) and I was trying to remember that name on Friday! I think it shows that you can have lesions but not MS… I don’t know enough about it but it might be worth looking into :wink:

So, what did everyone else do with their high heels…mne are going on ebay!

Sonia x

I look at mine and stroke them longingly I refuse to part at present its a step too far. Thank goodness I firmly believe converse go with everything A

Arwen, you star, you’ve just reminded me of the furry cons I have in the back of my un-cleared out wardrobe!!! :smiley:

So far, I’ve only flogged 2 pairs of heels, neither of which had actually been worn ooops I need to start listng or hubby is going to get really irritable with me lol

Sonia x

Nooooo don’t list them you can kiss them. You can get some really cool blinged up cons and I have seen some avenger and marvel ones. You can bling yourself by putting crystals on the toes and lacing with ribbons. A

Ooh if you like quirky irregular choice do some nice flats too. I have some pink suede flats with a jewelled turtle on by them which people love A xx (Secret shoe fetishist)

I am lucky that I have always loved flats :slight_smile: I also love selling on eBay although I couldn’t get to a post office or manage to wrap anything at the moment. At the moment I am diagnosed with CIS but that could all change when I see my neuro next week (I’m scared!).