Last reply 9 months ago
Diagnosed after 4 yrs CIS

I finally got my ms diagnosis after 4 yrs though at appointment I felt i had to push a bit for it. My neurologist was talking about waiting again to see if any new lesions on mri after a few new symptoms, recent one being reduced vision in left eye. On questioning why he wasnt diagnosing even if no new lesions he decided to have another look at mri’s from last 4 yrs. He asked if id had lumber puncture which I have had and was positive. He then said he could diagnose on the 2017 criteria.!!
I told him I was aware of criteria as we had discussed it last year and he said he should have diagnosed then. I am awaiting mri where then we can decide if starting treatment and have appt with ms nurse soon. Keeping positive and strangely relieved at finally having definitive diagnosis.

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Anonymous
11 months ago

Hi there @maureena, I have also just been diagnosed after being CIS for 5 years. Had a second episode of double vision and MRI showed new lesions which confirmed it. Also had a positive lumbar puncture 5 years ago so it wasn’t much of a shock. I also feel relieved and feeling fairly positive, I’ve seen the MS nurse and I am just deciding which DMD to start!

Good luck with everything!!


maureena
11 months ago

Thank you @robyn_pape . Hope all goes well with new treatment when you start. I have a list if dmt to start reading up on but wanted to wait till mri results are in before discussing further.


itsmewithms
11 months ago

I was diagnosed in 2005 with MS and had no reason to question the diagnosis as my symptoms were consistent with MS (optic neuritis, various gait/weakness issues over the years before diagnosed and MRI lesions). I was started on Copaxone and had no doubt that I was on the right path with a good diagnosis.

Then during a flare about 8 years after diagnosis the lesion was on my spine instead of in my brain. This caused my neuro to start asking questions. He sent me off to another clinic for a blood test and panel to make sure I didn’t have another disease entirely. I can’t remember the name but apparently it isn’t as treatable as MS and can have a quick decline. Copaxone isn’t effective for it. Apparently my blood test came back that I did not have that condition and certainly have MS, all was good, continue current path, etc.

My thought was “wait a minute – I’ve been jabbing myself each night with this increasingly expensive drug and it may not have any benefit at all? and you could have told that in the first place with a blood test? that costs how much? a fraction of just one month’s cost of the drug!?”

In my case it was confirmed that I do have MS but happened to get a lesion in spine instead of the brain that time. I understand these lesions are much more damaging so have to be looked for if you are prone to them.

So- it may be frustrating to go through this long diagnosis but I can see why in some countries and/or medical plans that they want it to be absolutely certain that you have MS before they start shelling out thousands of dollars a month for the drugs and you want to be certain before you start having to do the injections or take the pills as everything has side effects and is crazy expensive. Just the cost accountant coming out in me 😉 I was flabbergasted that at this point about a quarter of a million $ of Copaxone has been injected into me that may have had no impact what so ever? what kind of sense does that make if a simple blood test would have told them it wasn’t an effective treatment. So push through- make sure you get it right.


jenjm
9 months ago

Hi there @maureena
I was diagnosed with CIS on the end of 2017. My condition has worsened over the last 2 years with the pain in my legs some days being unbearable but my most resent lumber puncture was negative, so have not been diagnosed with MS I am being told I have to wait! Just wondering if you can tell me a little more about your story, I feel myself that something is not right and symptoms are worsening but until there is a change in my MRI or LP my neurologist won’t diagnose. Just looking for a bit of guidance.


mavisdavies
9 months ago

Hi I’m in the same limbo land of not sure what’s causing my symptoms but have had lots riles out. It’s scary to hear how many years it can take and the impact of not knowing or beimg diagnosed has on you emotionally as you know what you are feeling is not right. Be interesting to hear other people’s journeys.


jenjm
9 months ago

@mavisdavies , I know exactly how you feel. All you want is to know what’s going on and what you can do to help better yourself. To know that you may have to wait years on a diagnosis and maybe worsen in that time puts your anxiety levels at an all time time high. Hope you get the help you need soon


mavisdavies
9 months ago

Hi @jenjm exactly we may not know for sure what’s causing what’s happening but whatever it is is scary and not normal. I hope you to get some answers good luck.


itsmewithms
9 months ago

I see I responded to this before but just watched an Aaron Boster video that addresses the two schools of treatment approach…the one “old school” where they react to issues after they have happened…so basically they fix the fence after all the cows are out…and “new school” that tries to get in front of symptoms and disease progression.

Since I wrote my initial response I have visited the Mayo hospital in Rochester MN USA. They agreed with my Neuro that I am transitioning into SPMS. My Neuro said to switch from Rebif to Ocrevus ASAP. The recommendation from Mayo was to see if my progression was “active” and if it is then to start Ocrevus….I said, wait? what? Wait until it gets worse and then take actions to prevent it from getting worse? doesn’t that seem backwards?

I asked this young Dr if that is the same recommendation he would give his wife if she had MS, or his sister/brother or child? See how bad it can get and then do something about it? really?

Aaron Boster tends to agree with me…thought it was funny to watch his video on it https://www.youtube.com/watch?v=DAINEkp6LJU


mavisdavies
9 months ago

@itsmewithms I agree with you a d dr boster why wait for something to get worse before doing anything to help. I like your analogy of asking the Dr if you were his family member would he be saying the same, I’ve used it myself although most don’t like us tuning the tables and putting them in our shoes.


itsmewithms
9 months ago

@mavisdavies I think you have to make it personal to them so they think of you as a person instead of a lab rat 😉


mavisdavies
9 months ago

@itsmewithms definitely and only that I was vulnerable and shocked at the neuros behaviour I would of. I won’t make the same mistake next time. Thanks.

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