10 years for diagnosis

[crazychick65]

Hi not sure if anyone remembers me i started the group Surviving Neurological Limbo Land. Well finally after TEN LONG YEARS, i got diagnosed with MS, and its now Primary Progressive.

So the point of my post is this. Never give up.  I never did.  

My final test was another VEP test which came back positive again for ON.

In between have had several lesions on spine, but a non classical looking lumbur puncture which was the reason i didnt get the diangosis in the first place.

Myself and neuro have been through a long journey together and he has learnt a lot from me, he said so himself. He has learnt that not everyone with MS has classical symptoms.

So my question is this. Do you think you have MS, are your symptoms A typrical of it, but you cant get answers?  If so then dont give up.

Keep a diary, dont focus on all the rubbishy symptoms only the ones that truly impact your welfare.  Keep focused, dont google leave it alone.

Go on a really healthy diet, stay positive, as if it is MS it will show itself eventually mine did.

There is hope out there.  

I feel so vindicated right now.  I want to share hope with you.  As i know you will get there in the end if you believe, and stay true to yourself.

[TLC1104]

Hi,
So glad you finally got to a place where you have answers.  
Take care.
T

[suspiciouscombo]

Mind me asking what your atypical sx were / are?

[suspiciouscombo]

Been nearly 9 years for me with recurring episodes but still no explanations. Though I'm happy with my neurologist (and I've been through a few) he still recently voiced that he's not seeing a big red flag for ms currently.

That said, and after discussing the new symptoms I've had, he has decided it to be reasonable to order / repeat brain, cervical and thoracic MRIS on a 3T as my initial was on a 1.5. He ran more blood work but thus far all normal including Sjogrens.

Ever feel like you live in clinical testing limbo land? My fear as a few here are aware, is having a fairly significant history of what appears as ms episodes (last one being the most severe) and to be informed from two ms specialists that they don't see anything pointing to ms after reviewing my MRIS.

Yet, all other non neuro physicians express their concern that my symptoms are relevant to ms and direct me back to neurology for further evaluation.

Just glad after seeing my neurologist recently, and after another normal exam, he felt it was necessary for more MRI testing as he claims that ms is unique. In that, early onset symptoms are apparent in some patients but visible finding may not be.

Very frustrating as a dx is not desired but the unknowns and suspicions keep you wondering. Very pleased to here you finally have some finality in this.

[crazychick65]

My neurologist kept saying my symptoms were not typical etc of MS, then when he finally said I had MS, he said to me, if i didnt know you, and you were a stranger and walked into my office for the first time I would have immediately seen an MS patient in front of me.
Errrrrr so was he blind before then, as nothing has changed, sometimes i walk in and sometimes i am pushed in. Honestly made me a bit cross to be honest.
Dont give up. x

[HVAC]

I am glad you finally got an answer. It took me 46 years to be diagnosed with MS. They knew I had a neurological disorder just not which one. I also have PPMS. I think a lot of neurologist are not used to the differences.

Alex

[aspen2]

I'm glad you have answers, finally!  My limbo journey just ended as well, although it was only three years here, thank goodness.  (I'd say I don't know how you lasted so long, but I've learned that you last as long as you have to ... ;) ..)

I was wondering if you had primary progressive all along, and that's why your symptoms weren't typical?

Agreed that those in limbo just need to keep on keepin' on.  I was dismissed twice, also heard the functional overlay term once -- navigating neurological limbo is a tough haul and can be a long one.

It just feels good to finally have an answer, doesn't it?

[supermum_ms]

Hi there and welcome back,

Thank you for letting us know, although i hope you realise that there wouldn't be many MSers today who would of stayed with the same neuro for 10 years, one who wouldn't diagnose MS because of their LP results, and despite them having 3 lesions on my spinal cord, a positive VEP and abnormal neurological clinical signs as you did.....to be brutally honest i'm annoyed on your behalf, being left in limbo for a decade as what's happened to you should never of happened in this day and age! HUGS!

A good source of Information about anything MS related and in plain english is actually barts blog eg http://multiple-sclerosis-research.blogspot.com/2015/01/education-whats-mri.html

'Just a thought' but if you have spinal cord and optic lesions but still no brain lesions after a decade, has your neuro considered a similar neurological condition to MS called Neuromyelitis optica?

"Neuromyelitis optica (NMO) and NMO Spectrum Disorder (NMOSD), also known as Devic's disease, is an autoimmune disorder in which immune system cells and antibodies primarily attack the optic nerves and the spinal cord. The damage to the optic nerves produces swelling and inflammation that cause pain and loss of vision; the damage to the spinal cord causes weakness or paralysis in the legs or arms, loss of sensation, and problems with bladder and bowel function."

NMO is a relapsing-remitting disease, like MS. During a relapse, new damage to the optic nerves and/or spinal cord can lead to accumulating disability. Unlike MS, there is no progressive phase of this disease. Therefore, preventing attacks is critical to a good long-term outcome.
http://www.nationalmssociety.org/What-is-MS/Related-Conditions/Neuromyelitis-Optica-(NMO)

PPMS is one of the types of MS that doesn't start off as RRMS, if you use to have a relapsing remitting pattern and that's changed to a progressive type without the RR pattern, you could be more in line with Secondary Progressive (SPMS), which is what RRMS can still become over time....

Anyhooo thanks for the update, it's always good to know what happen's to be people who join our little MS community,  maybe you could consider sticking around, hint hint :D

Hugs..........JJ

[crazychick65]

Hi in the UK you have to stick with the neuro you get. I actually saw two others for a second opinion, one said CFS and the other one Functional Disorder lol, and NEITHER of them had seen my notes.  
I actually have more going on been diagnosed with Transient Epieptic Amnesia too which is very rare.  On my first ever brain MRI there was a large area of high signal foci in the deep white matter of my brain and the radiologist said it could have been demylinating but chose the easy route my age lol.
For now I am happy with what is going on and some people i know were diagosed for 8 years then told they never had MS, for me must be the worse thing ever.
Thank for answering i am sure i remember you. xx