krisp 05/05/15
Last reply 3 years ago
Not Ms?

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

I am happy but not convinced I know that’s daft but can the neck issues really cause all this and the arm problems?

I’ve still got LP tomorrow to see what that shows, I guess if that’s clear the odds are he’s right?

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hollylb10
3 years ago

Well there you go….all that worrying and its not MS after all. Maybe you should look at fibromyalgia?


stumbler
3 years ago

@krisp , if it’s a case of messages not travelling from the nerve endings to the brain properly, then you are looking at potential constrictions somewhere en route. And, the cervical spine is where a lot of messages pass through.

So, if disc protusions are your problem, did he suggest a way forward for you?


northernlass
3 years ago

Hi @krisp In one way that is great news that it is NOT MS but on the other hand .. what the bloody hell is it then… I feel for you (when I was DX’d last year I truly expected to be told my weird symptoms were due to a nerve in my back being sqwashed or something as I have low back pain… didn’t even know what MS was…) I really hope the LP gives you clear results and the doctors finally find out what it is that is causing your symptoms.. Good luck and Best wishes


krisp
3 years ago

Hi thanks guys
I thinks all of the issues are from the disc problem especially because there are no fixed deficits if that means anything
I’m not sure right now but then again it doesn’t sound like Ms either
It’s impossible right now
I hope he’s right


brokendancer
3 years ago

That makes sense and I’m relieved for you that not MS but I can understand your frustration.
I truly believed I had the first MRI because I had some trapped nerves. I had no idea about MS til he expanded my MRI on screen and showed me the lesions.

I’m glad for you but hope you’re getting things sorted

Sonia x


krisp
3 years ago

Hi thanks Sonia
Like I said there’s some things that still concern me, but like he said there’s no fixed deficits, nothing on mri, normal neuro exam, if the lumbar puncture is ok then there’s only the smallest of chances
And if the disc issues are what’s causing the problems then at least there’s an answer for it
Still need to see someone about the back pain though, I’m happy but extremely cautious now


Anonymous
3 years ago

Really pleased for your krisp 🙂 huge relief.


krisp
3 years ago

Hi thanks sandwich I hope and pray he’s right now!
Thanks


krisp
3 years ago

I’m still not convinced after reading today
I don’t know that disc bulges can cause all the issues I’m having, I hate this not knowing no exclusive test crap
Let’s see what the limbar puncture says I guesss


Anonymous
3 years ago

Krisp you need to accept you’ve had two opinions, 3 mri’s and more than one Neuro exam and they’ve all come back negitive for ms. Go live your life 😉


tracyd
3 years ago

Hey Kris

Traumatic neck injury can cause he arm, spine and even walking changes. I had a massive spinal injury in 1995 whic I put a lot of MS symptoms down to. I ignored them and his mostly hope they will urged off.

Give them the chance to see if this can be made right xxx


krisp
3 years ago

Hi thanks sandwich and thanks Tracy
Like I said I’m ok to a certain extent but there’s ALOT of sylltoms I can’t put on the neck
Then I’ll read of someone who had a similar situatuon to me with all clear tests and then went on to have Ms
It’s mainly the speed so far that worries ME but it makes Ms look unlikely because of that too, also if it is Ms then it makes it look bad
They need a definitive test its ridiculous
Any tips on the Lp toO? The hospital bed is only booked for an hour


stumbler
3 years ago

@krisp , the thing about Lumber Punctures is to avoid the headache afterwards.

The usual advice is to stay laying down for sometime afterwards and drink lots. Only having the hospital bed booked for an hour seems a bit shortsighted.

Drinking caffeine’d drinks is supposed to help, so try drinking a cola – the original cola, not some of the new sugar-free variants.

Good luck with it.


krisp
3 years ago

It was the neuro who did it
I asked them do I need longer and he said no


krisp
3 years ago

Had the LP today and saw he original neuro who knows the chap who did he second opinion
He said the second opinion chap is wrong in that the neck issues can’t cause all of my sympotms?
These guys are mad! No wonder im stressing
He did do more tests though for stiff persons syndrome and something else and ordered nerve tests to be done!


stumbler
3 years ago

@krisp , we’re complicated bits of kit and they’re not magicians, unfortunately.

You’re progressing in the right direction.


reddivine
3 years ago

@krisp these guys train for YEARS to be experts in their fields. You can’t go asking neuro after neuro untill you get the diagnosis you want. Do you WANT MS???

Pretty much none of us do. they do try and rule out any other reason. I’ve been x-rayed, MRI, sent for conductivity studies, physio, neuro-physio…just go with the flow and keep digging till you Do get a diagnosis.


krisp
3 years ago

Hi red divine
I don’t want Ms no not at all but I need to know what it is so I can get sorted
It’s not Ms I’m scared of as I know many can live normal life’s and to normal life expectency
It’s the rate of progression of this so far if it turns out to be Ms, it’s been so much so soon that even me as a cynic would question what was true if someone told me what I tell people
But it is all very real and all very painful


cherish
3 years ago

Poor you Krisp. Was just reading this thread 🙁
At our 5rs group there are 9 out of 10 of us have ms, but the one lady that dosnt have a diagnoses is climbing the walls with frustration. On Tuesday next week she is going for an upper arm muscle biopsy to test for MND but the neurologists also appear to be certain that it isn’t MND neither. It must be so so difficult to have all this s**t symptoms yet no name for what you have! Poor Helen has been tested for almost everything testable but nothing. I so feel for her. But the ironic thing is that the group is meant for ms sufferers and her neurologist put her forward for the group as they said if this had been the case of a ‘clinical’ diagnoses only then they were so sure that every symptom she has is typical of PPMS. Bless you lass xxx


krisp
3 years ago

Hi Thankyou
I’m a bloke by the way, but ill answer to lass if it helps
I think what I’m struggling with is no one telling me what it is and looking at the anxiety before everything else, of course I’m anxious!
It also doesn’t follow the typical RRMS and looks more like ppms but at the same time some symptoms have remitted so it doesn’t look like that either and with clear scans so far it’s impossible
I’ve got mri of middle lower spine this week I think, nerve conduction Wednesday and waiting on Lp results so should know more then


cherish
3 years ago

Omg, I’m so sorry, how dare I prusume you are a lass! 🙁
So lad (lol), I guess you are sick of feeling bloody pants but having no diagnoses. I guess it’s worrying you on the medicine side too bcoz if you knew what you were up against you would have an option of meds for some of your symptoms 🙁
Hopefully there’s some answers coming for you after this week.
Frustrating to say the least.
Il nickname you ‘lad’ (as I slap mmyself for calling you a lassie).
Bloomin Scottish slang. Haha. 🙂

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