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Now I'm really confused !

Hi guys
Come from my second opinion neuro
Told him all the symptoms and he did another neuro exam all normal
He’s looked at scans again all normal apart from disc protrusion at three levels, which impact the centre of the spinal cord quite badly
He said its not Ms it doesn’t present like this and it’s certaibly not ppms, he’s putting it all onto the cervical disc issues which I find odd?
He said with the sympotms I have he would expect to find something on exam or mri and that he’s seen 2500 with Ms and what I have is not Ms

then today I go for lumbar puncture with the original neuro, who incidentally did it with me sitting up and then told me to go straight home no need to lie down?

i told him about the other neuro, he says I don’t think he’s right, your neck issues aren’t bad enough to cause your symptoms, he’s also still fobbing off the stiff legs?

He ordered more bloods for stiff persons syndorm and nkcgg and said LP results will be a month

im so confused !

He also said the discs are degenerative and not impacting the cord

Hi Krisp. That’s good news I’d say ? Hope they get to the bottom of it for you .

kat x

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Hi Kat

i thought so too but I’ll wait until I have had the LP results now which he’s saying will take a month

i can’t believe all the issues are from the neck but if at least some or most of them are it would mean a less aggressive course I guess?

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Kris I’m pleased they’re siding with it not being ms and you should be relieved too, though I do understand your frustration. LP results do take a long time but should help them confirm or rule ms out.

I get really angry with doctors saying a symptom isn’t severe enough or is too severe for a diagnosis!!! Every one of us respond differently to stimuli whether they be minor or severe. What may floor me might make someone else flinch. My neck was in such a mess when I was operated on that I should have been in a wheelchair and unable to do much at all with my arms yet I was mobile with a stick and although I was unable to nurse, I was doing admin work for a limited number of hours a week. Nobody has the right to tell you what you should or shouldn’t be able to do by an x Ray or scan etc. Sorry, rant over.

Please don’t lose heart Kris, every test or examination should be seen as a positive move towards a dx. I know, as do many people here how frustrating the time leading up to the answers is, and with Neuro problems it’s made worse as the symptoms are mostly invisible, hard to fully evaluate and so similar in many illnesses.

Have they decided if they can treat your spinal problems? Fingers crossed your LP results come back clear, please keep us posted.

Cath x

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Good news me thinks, but not knowing what it is can be frustrating. Hope you get some answers soon.

Don

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Good news KrisP, I do sympathise with your need for a name though.

Jan x

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KrisP,

Do google - MS and Atlas Orthogonal - and read all the different sites about it. This might give you a better insight to what your problems could be.

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Hi guys thabks

Cath the original neuro said its not the spine but the new one said it is but it’s not a bad enough disc to operate yet ? So I’m confused. Thanks Jan and Don. I’ve had more bloodtests again today, my big concern is if it is Ms whether it’s ppms which at 30 with all these issues is cruel!

he did say he doesn’t tbink ppms as the lhermittes had gone and the way the hand and foot tinglong came on over a week or so got real bad then went away and only comes back on and off now

ill have a look at that thing you mentioned now too

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I had a look at the atlas thing and it looks interesting! I’m worried though because I have the cervical disc issues too?

has anyone here been told their pains etc could be fibromyalgia too?

Fibromyalgia can present very much like MS. Over the years on here I’ve seen many people who thought they had MS being eventually dx with Fibro. The same with ME. I was initially mis-dx with ME & there are many similarities with MS.

You have to remain very open minded. Easier said than done I know.

Pat xx

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Hi thanks Pat

its all odd right now, the speed of symptoms makes it look unlike Ms but then if It does turn out to be Ms it means it’s very aggressive. The leg issues seem really bilateral and movements seem to change the pain too

for example the leg issues are worse when lying a certain way, it’s really odd

kris

I really don’t this its MS Kris , not that I’m a medical professional .Fibro can cause the stiffness and odd sensations so possible !its one if the things I’m thinking I may have if not Ms.

Hi

im hoping not I really am, I could cope with fibromyalgia and pain even though it’s not nice, I need to be able to look after my family and it’s all been so much already in four months

ive got an mri of the full spine next week I think plus the nerve conduction stuff so at least I’ll have had literally the full work up then

Kris, while I really do respect and understand your need to find out what wrong, you need to remember that many… in fact most… of us on this board are disabled, some severely disabled, with progressive MS.

We too have families. Many on here have children still at home. Many of us have had to give up work. Many of us have been living with this for years.

Our lives have not ended because we have MS. It has changed our lives forever… but we are still here and still living our lives.

A bit of sensitivity would not go amiss. Remember dozens of people, maybe more, read these posts & come on here for support from others who understand and can support them.

I’ve been avoiding saying this to you for some time… the last thing I would want to do is upset you… but in your anxiety about your own symptoms and what they might mean, you are forgetting that the people on this board are living with diagnosis of progressive MS.

Think before you type!

Pat xx

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Hi Pat

i apolgise and you are correct it has been insensitive of me, it’s the anxiety making me run away with possible future scenarios based on the rare stories I read rather than the majority which states ofherwise

i apologise if I have annoyed anyone I will be sure to take my worries elsewhere

thanks

Kris

Also I’m only basing those assumptions on how many issues I have had already not the general picture of slow onset ppms

thanks

kris

Hi Kris, while I totally agree with Pat don’t stop posting your worries on this board, just be a bit more sensitive.

a year ago I was in the same position as you, young family needing to work, health deteorioring rapidly and nearly losing my mind with worry. Pre diagnosis is a very stressful time and you can be consumed by the what ifs?

you are doing all you can, your tests seem to be happening reasonably quickly so try and relax a little.

i was diagnoised with PPMS and the world didn’t stop, I am still working and raising my family and feel I am doing a good job. I have had to make changes in lifestyle but nothing drastic so far, although this may well change.btry and take each day as it comes you will get a diagnosis at some stage.

good luck,

ann x

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hi thanks Ann

maybe I have been a bit too open about my fears and I apologise for that

it’s all new to me and im scared if truth be told not only of Ms but the apeed that all these things have come on and of course of possible ppms at 30yrs old which would truly be a rough ride given I have worked hard for years to get myself in a position to enjoy life and now this, thankyou for your Advice I appreciate it

I’m trying to spend less time on here now and enjoy my life

thabks

Kris, have you tried the Newly Diagnosed and Pre Diagnosis? I’m not suggesting for one moment you’re not welcome on here just that the people on that section of the forum have so much more in common with you?

I hope you get some answers soon, I can see that it’s torturing you.

Nina x

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