update

New diagnosis and before diagnosis
1

Hi all,

I got my results from neuro via letter, and mri of brain and spine with contrast is all clear…letter states “no abnormalities what so ever” so i guess thats it?

She did say in letter that my symptoms are consistant with symptoms of transverse myelitis…have googled it and i kinda have some of the symtpoms but not all… and i never have had a fever or injection or virus before any of this started!

But hey i got appt for 1st oct to see MS specialist at my hospital, so i guess she has passed me on to him?

Symptoms still same, tremor still around but milder and temp sensation still not back, twitching and banding feeling in lower left arm blah blah.

I better but not gone, also she made me have b12 blood test!!! cant beleive it wasn’t done from start aas i have had my gallbladder removed and its a common problem with that!

Feel upset i have no answers and feel like i not geting anywhere, not sure what to think now? should i not be on this site and just forget it all?

Any advise welcome please, i feel low totday and confused and uncertain of where any of this is going now!

Lea xx

2

You must be feeling so confused by it all, I know I would be, hope the MS specialist can help more & give the answers you need, I guess just keep pushing things until you do get the answers x

Can I ask what you meant when you said about the B12 & gall bladder removal please as I had my gallbladder removed just over 3yrs ago now.

3

Lea,

I too had a bout of transverse myelitis started Feb with a terrible virus and “came on” like a stroke over a few days

Had a brain/spine scan and all clear.

TM can be a one off for example after a virus or it can go hand in hand with many illnesses…the obvious one being MS ie there can be an underlying cause. The tremors and the hug and all of that made me also think I had MS.

I have never known pain like it, I have used oral morphine…

I have had every blood test udner the sun to rule this out, it was suspected my TM was caused by an autoimmune illness…so I left this site but blood test revealed that was not caused by that.

At this point my neuro said this may be my new normal, and I may never know what caused this illness that has kept me bedridden in some parts and am still very immoble.

So I did, my husband got me a disability scooter, though I was still not well enough to go back to work.

Then in July I am convinced I had another episode, that put me considerably backwards. Possibly the worst part was that I lost my gag reflex and was choking and aspirating food. I have made progress since then and almost returned to how I was before the July incident.

I went back to see neuro and I am awaiting fresh brain/spine scans, so I’m back as I am scared that ms can take a while to show up on an mri??

I really hope I’m wrong, I don’t want ms, I would rather be as I am…so yes I fully understand how you feel and I have been off work since Feb.

If I’ve missed anything youre interested in - let me know.

Gillian x

4

This is fourth time lucky: first time I wrote the whole post and comp crashed, second time someone switched off the computer I was locked on so I lost the post I was half through, and then got called away at work.

So here goes:

My symptoms started with stiff L leg last year then neck spasm with pins and needles in hand and sl weak arm I was referred for physio with ? trapped nerve. Then I developed, parasthesia on my L leg and face with mild bladder and bowel issues. I had heap of bloods and MRI which came back with non-specific subcortical lesions (not usually inkeeping with MS). My neuro at the time who inadvertantly was an MS specialist said it may or may not be MS but just deal with it and get on with it. I then had fruther issues; MS hug, ?TN and saw my neuro after a repeat MRI which was stable. He fobbed me off and didn’t really listen and said I don’t think it’s MS. I pushed and asked what then and he said I’d had an epsiode of spinal inflammation (even though my spinal scan was normal - its quite difficult to image the spine). At this point even if he was right I didn’t feel comfy seeing him as he kept fobbing me off and wasn’t helping my symptoms.

I then got a second general neuro opinion last week. The neuro said even though my neuro exam and MRI are almost normal my symptoms are in keeping with MS so ironically he’s referred me to a new MS specialist (crazy huh).

So I can also really sympathise with what you’re going through. What I would say is it’s good your neuro believes you have got a problem even though your MRI is normal (a lot don’t). As Gilian said Tm can be a precursor to MS so this is probably why you’ve been referred to the MS neuro. Doesn’t mean you definitely have it but if they can’t find any other resons for the TM occuring and you get new symptoms it makes good sense for them to do this.

I really hope it ends up not being MS

Reemz

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5

hi

i was dx with transverse myilitis after my first episode as i only had 1 lesion on spine but i had a relapse last new year and that showed 2 new lesions on brain scan…from everything i read about TM it is almost always the first signs of MS

so hang in there and stay on website with us all…

take care

baz

6

Lea

Gokr made a really valid point…our neuro’s are not passing us off. Also, sounds like your guy said almost word for word regarding spinal inflammation that mine did…but I know that my neuro believed me which is really important!

I am low too but mainly because I don’t want to accept that my reduced capabilities are my “new normal”, I was soooo strong and capable before I became illl.

I know it sounds nuts, but I think it’s difficult to accept that we may never understand the “why” something (this) happens, but I would accept the “not knowing” if it’s not MS. Limbo land sucks, but this is a nice, sane, caring community to pass the time.

I tell myself that as TM’ers we have a kinda right to be here, the guys on the TM site dont chat much. I’ve always been honest with why I am here…and been welcomed. So lets stay awhile…the great thing is, our symptoms etc are mainly the same so we have a great deal in common.

Please keep in touch, Loev Gillian

7

Hi Everyone!

Thanks for all the replies!

I guess the neuro i’ve seen thinks TM, so ok maybe she right but how can she tell ? (as mri had no abnormalities, so basically perfectly clear?) and she a gp/neuro so now she made me appt with ms specialist at my hospital (although this it at another hospital thats joined with mine) so i will have to ask him lots of questions when i see him?

Also for ast 3-4 days i have rippling (dont know how else to describe it) of my muscles in left leg!!!

What the hell is it, no pain just annoying! It was only happening when i stand, but yesterday it was doing it on/off all day even when sitting?

I read up about TM obvoiusly when she wrote this and i sem to agreee with your posts, no idea how it started and prob never will, but can it be MS still ? I guess as things easing off i will have to see if it all comes back? i hope if it b12 then shots all fixed? if not and its ms then i presume i will have a relapse at some point and then ask for another mri to see if any changes?

So many questions i need answered?

Want them to keep eye on me to make sure ms is not a possibility.

Want to know what happens now.

Will the rest of my symptoms go and what will be permantent?

Why is my left eysight fuzzy but not getting better with my glasses?

When will i be able to pee properly etc etc etc

God the list is endless!

Reemz, out syptoms are so similar but you have lesions on MRI? I am still working and coping well, just want to know what is is and fix it! not too much to ask is it? Guess ing by nero passing me on, she stuck on what it is and grasping at straws?

Guess b12 results will answers alot i suppose and again i have to wait to see neuro in oct! More waiting !

LOL at least i still sane and mobile, shouldn’t winge realy!

Thanks everyone, i will hang around for a while until i sure its not MS if thats ok…you’ve been loads of help and it has kept me smiling on some very bad day !

Love you all loads hehehe

Lea xx

8

Hi Leah

Hugs my lovely and try not to overthink - I can see you’re minds whirring away.

So in terms of the symptoms from your ?TM: These may all go/may not go or partially go. The spine is much more difficult to mend but does also take longer than if it was a brain lesion so recovery can continue for anywhere up to 2 years though the first 6 months are the most telling. Its horrible but there is a chance this maybe the new you. This was something quiet hard for me to deal with - I love dance and running and though majority of symptoms from my spinal inflammation epsiode were mildish I certainly couldn’t run and came home in excrutiating pain after doing Argentine Tango. Give yourself time to come to terms with things if you improve its a bonus and try to focus on what you can do. I now go yoga and do belly dance which is less demanding when I’m feeling good.

My MRI’s - I had no spinal lesions like yourself but still got told I’d had an epsiode of spinal inflammation. This is beacuse the spine is vey hard to MRI lesions don’t always show up So it was based on symptoms. My brain showed non-specific lesion whcih could be age related or could be signs of something (they’re not typical of MS but not everyone goes by textbook).

Can this still be MS? The answer is yes TM can be the starting of MS though the longer you go without any episodes of symtpoms and clear MRI’s the less chances it is. I can’t remember what the stats are for patients with TM that end up with MS but if I come across them I’ll PM you.

Your new symptoms: Your LEye being fuzzy concerns me. This wouldn’t usually happen with TM - I think you need to tell your neuro/GP this may need investigating if it isn’t being done already. As you know MS can cause eye problems and sight is very precious. There is another disorder known as NMO which can cause spinal inflammation and eye problems (its very very rare) so again better to be checked out. The muscle rippling you’re getting sound like possible twitches. I get these in my arms and legs and the odd one in my butt. It feels as you say like rippling/vibrating and if its quiet severe when I olook at the muscle I can see it jumping slightly. Its not harmful just annoying and maybe part and parcel of your body rewiring what went wrong but if you get any further new symptoms or it gets worse I would mention to your neuro.

So to reassure you you’re in the right place being sent to an MS specialist. If you’re lucky you may never develop MS and get any major new symptoms. But at least if this is the start of MS you’re seeing the right person and MRI’s can be repeated to look for change. Its hard not having control of what may happen - I know whats how I felt. You can battle something you know but its the unknown thats hard. I guess for me knowing that worrying won’t help get me a quicker diagnosis, that I’m beloieved and I’m trying to do what I can tell help is my saving grace. As I said I do yoga/ bellydance. I still work and I write in my spare time. I’m making the most of what is functioning so that IF things ever get worse at least I’ve enjoyed what I can do now (thats not to say I don’t have bad spells and get down about it its only natural) . I’ve also seen an osteopath for pain and will go and have some acupuncture. Its not for everyone and there’s not scientific proof it will help but I’m willing to try.

Best of luck Lea with your journey yhope you get some answers soon. And as you say who knows this could all be vitamin B in which case this is treatable so there maybe some light at the end of that tunnel yet.

Reemz

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