Last reply 1 year ago
What on earth are the drs waiting for?

So I just got a call from my MS nurse to tell me my MRI showed no new lesions on my brain, but still showed the large (what she called severe) ones from my MRI over a year ago. For the last 3 months I’ve gone through hell with back pains, spasms, shaking, stomach pains, eye pain and the list goes on and on. They are classing this as Radiologically Isolated Syndrome again, making this the fourth “isolated” incident I’ve had. They’re not concerned because my MRI is fine, so they’re waiting a month to see me to even discuss the possibilty of treatment, rather than seeing me ASAP. Are they only concerned about MRI results and not the physical manifestations of MS that I’m having. Will I only be given the correct treatment once I’ve had my 10th relapse and the MRI also shows new lesions? Can they start me on treatment without an MS diagnosis? Because if not, that’s mighty unfair, considering I’m experiencing so much uncomfort.

So, what exactly does it take to get an MS diagnosis? Will they not diagnose me unless my MRI shows new lesions despite me having relapse upon relapse or is there a certain number of “isolated incidents” that they say enough is enough this poor sod has MS. This has all gotten very confusing now, because if they’re saying it’s not MS then what the hell is causing all these problems?

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tracyd
1 year ago

@eigenhater

I think you need a new neurologist perhaps ….. one of those nice people at St Barts perhaps


eigenhater
1 year ago

@tracyd

Thanks for your reply. Why do you say this? Do you think that my neuro is missing something, and do you think I should seek a second opinion? If so, I’m really not sure how to A) break it to my neuro that I don’t think she’s doing her job properly, and B) go about seeking a second opinion


tracyd
1 year ago

I think that perhaps they should be looking for other potential causes if they DON’T thinkit’s MS


potter
1 year ago

Second opinions are very common, when you see her in a month ask her for a referral for a second opinion. I shouldn’t bother her and you will kill two birds with one stone. You never know she might think you are a hypochondriac and be glad to send you to another doctor. My GP thought I was a hypochondriac, when I was diagnosed I change GP’s also. I asked him for a referral for ten years to get tested for MS, he just kept telling me nothing was wrong. If I ever run into him I am afraid I might bite him, I am least going to growl. Potter


noelie
1 year ago

@eigenhater sorry no answer, but i so understand your frustration, my MRI showed lesions, and i got a CIS diagnosis in Jan last year because I only had one episode on my leg, (which had been going on for one year and making my life hell), and told they couldn’t do anything for me. “luckily” (ahem, ahem) my arm went shortly after which gave them enough to diagnosed me with MS and entitled me to treatment. When i then researched MS treatments, some were also recommended for CIS. So yes, what were they waiting for. Why wasn’t i treated for CIS? I wish you luck, answers to all your troubles and an effective treatment soon.


purple72
1 year ago

I had the exact same concern about getting a second opinion (“what if my neurologist thinks I think they’re doing a bad job” etc) but someone reminded me that the process of a second opinion exists in the healthcare profession for a reason – it’s apparently pretty common for a significant diagnosis like MS. Apparently medical professionals are used to it, so it’s highly likely she won’t bat an eyelid!

It brought me some reassurance – so thought I’d share! 🙂


spunky
1 year ago

I find it strange that in Canada they treat immediately for CIS (first line DMT) but once given the MS diagnosis they continue to try to treat the MS with first line drugs.

While in the U.K. they don’t treat CIS but easily prescribe Lemtrada and stronger DMTs to new MSers.


eigenhater
1 year ago

Thanks for all of the replies guys. Looks like I will seek out a second opinion if my neuro can’t provide decent explanations as to why I’m having so many problems with no diagnosis. Would like to see what she says about treatment because I can’t keep on not being able to walk properly and getting crippling pain every few minutes or so.

From what I’ve gathered from some replies here and other accounts elsewhere, people have been diagnosed for less than what I’m experiencing (4 “episodes” positive LP and brain lesions on one occasion) so I will also be putting that question to the neuro. I’m genuinely curious as to what it takes to diagnose MS, because obviously it’s damn complicated.


stumbler
1 year ago

@eigenhater , yes, MS is complicated. But to answer your final question, a diagnosis of MS must fulfil the McDonald criteria. So, you may find this link useful :-

https://www.mstrust.org.uk/a-z/mcdonald-criteria


tracyd
1 year ago

@eigenhater
Might be worth doing some research about your Neuro and their speciality.
Mine is a specialist in MS which is why I chose her as the one who I wanted to be referred to rather than a couple of others who were offered that were just ‘general neurologists – sort of an all purpose head things’ ones.
Changing from one neuro to another is a common thing and I really doubt that there’s any hurt feelings unless you stand in their office, yell at them, tell them they’re crap and you’re off to find someone who knows what they’re doing type scenario ….. then I suspect there would be hurt feelings a plenty, but asking to be referred to an MS specialist neuro isn’t uncommon or a problem normally 🙂

Hi there. Before I was diagnosed in 2000, I had blood work taken to rule out other illnesses that can mimic MS, a MRI to rule out MS, and once the dr saw lesions, a spinal tap. From what I was told by my first neurologist (she changed her specialty from MS to headaches), MS cannot be definitely diagnosed without a brain biopsy; dead. Now, that was in 2000 and I’m guessing things are different today for a more concrete dx. I, too, would seek a second opinion. I’m on my third 4th neurologist (1st changed speciality, 2nd apathetic, 3rd passed away). The 3rd specialized in MS and his successor specializes in MS. Good luck to you and don’t be afraid to ask questions. No one knows your body as well as you do.

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