Hi,


I just wanted to ask a few questions about MS diagnosing process. Over that last 6-12 months I have had 3 MRI's. I have multiple lesions on my brain. No lesions on my spine. Spinal fluid showed something (they didnt explain it to me properly) high white blood cells I think. Although I have lots of symptoms, they say clinicly I show no signs of MS. So they cannot diagnose RRMS at this stage as they can only prove one scarring episode. 6 Months later, I feel my symptoms are slowly getting worse, but no loss of movement in one particular limb. My worry is I am going to be diagnosed PPMS. If I get to 12 months and they can see I have more lesions, does that mean I am automatically PPMS? What if the lesions on my brain were over a few episodes, but they just cant prove it. Am I still open to a RRMS diagnosis?


Thanks for listening.

hi steve
welcome to NT. i don't know the exact answer to your Q. what i could suggest is that you get a copy of the mri on a disc and a copy of the report. just go to the place where you had it done and sign a release. it's your legal right to get your records.

start to accumulate a medical file on yourself. it will come in handy as you travel the road to a dx (diagnosis) or it's ruled out. you also might want to consider getting a 2nd from an MS specialist. you could ask your local MS society for dr names (call 1-800-FIGHT MS) or google some names in your area. you can also google their rating on Healthgrades.com.

start to keep a brief sx (symptom) journal with your sx's and dates.
have you had any vision problems?

it can be a journey to get a dx of MS. it's a process of elimination. i'm wondering on your LP report....did you have any O-bands? a result of 2 or more could lean towards MS. you can google MacDonald Criteria. it's something neuros use to guide a dx to MS. see if you fit.

please stay in touch. you are your own best advocate so don't give up.

Nancy gave good advice above. The key you want to look at is the McDonald Criteria. If you only have a couple of lesions, they typically want to see either new lesions more than 6 months apart from the previous ones, or more than one episode of clinical symptoms separated by time in order to give a diagnosis of MS. I don't know for sure, but I doubt they would give you a dx of progressive MS if you did not meet the RRMS criteria, because it is likely the lack of defined progression (either via new lesions or new symptoms) that is keeping you from getting a RRMS dx at the moment.

Right now, they probably have you Dxed as CIS or clinically isolated syndrome...meaning you have had one episode of symptoms and one set of lesions visible on an MRI to go with it. Until you either see new symptoms, significant progression of you existing symptoms, or new lesions, you are likely to stay stuck in that limbo area. Therefore, if you think there are changes occurring to your symptoms, it is VERY important to record those changes and track when they happen and how long they last in a diary of some sort. Then provide that information when you see your neurologist. That list of symptoms or changes is what they will need to define the change in clinical condition that would form part of the diagnostic criteria.

It is hard to say good luck...because nobody wants to hope for an MS dx...but I hope you get some resolution and clarity for whatever it is that is causing your symptoms!

Hi kell.steve@bigpond,

I'm not understanding something, I guess. You mention having "multiple lesions on the brain" as shown on an MRI and yet there is no MS dx. These were some other kinds of lesions, or they weren't clearly MS-type lesions?

Usually if there are multiple lesions on the brain and they're in the locations favored by MS and look like MS lesions, the neurologist will give at least a tentative MS dx. Maybe the clinical exam didn't show any signs even though you'd been having symptoms? Even then you'd probably be tentatively diagnosed with MS.

As TxBatman said, you may be classified as CIS for clinically isolated syndrome. It would be useful if you could get a copy of the doctor's notes on your office visits and any reports about the MRI. If you're listed as CIS, many doctors now will start prescribing one of the MS disease-modifying drugs because it's been shown that these are most effective if started early.

You might not want to worry about whether it's PPMS or RRMS just now. You may have heard that PPMS is a "worse" form but actually many people with PPMS live out a normal life span and aren't so severely afflicted as you might think while those with RRMS have to wonder when the next relapse is coming their way and how bad it will be.

These categories (RRMS, PPMS, SPMS) are a bit fuzzy anyway. The experts aren't always sure which category you're in.

Hi, thankyou everyone. I am currently diagnosed as clinically isolated syndrome. I have never been told how many lesions I have but there are quite a few, I am not sure they have ever counted them, but it would be way over 10. My neurologist did say it looks like ms, sent me away with a ms australia pack, ms connect rang me and touched base. Then my neuro went and saw her collegue professor, and she back tracked and said no. Left me for 3 months and then did another mri. Under her breath I could hear her muttering ms, But then she consulted with professor and he said no. She put me on steroids and sent me to see professor. He said it could be anything, but dont stop moving and sent me home. After 3 months my neuro then did another mri and spinal tap, deemed me stable and said see you in 12 months. I am slowly getting worse, especially headaches, vision, muscle loss and stiffness. I feel like I have had a labotomy. My last bloods showed I have hypercalcemia, so I have stopped all vitamins and will be retested in 2 weeks. My biggest worry is PPMS as I have heard there are no drugs that help slow down the progression for this type of ms. If worst case senario and it is ppms, am I still able to take the RRMS drugs just in case they are wrong? I know I am jumping ahead, just helps to know I have a solution for every senario! thanks again everyone

Thank you for explaining. They are working on treatments for PPMS and recently seem to have found one or two that just might work--ibudilast is one but it isn't available yet.

You might be able to decide for yourself what type of MS you seem to have. If you are having remissions--periods of time when you have no symptoms--you don't have a progressive type of MS though there is a type known as "progressive relapsing MS" that is rare. I believe that that classification (progressive relapsing) is going out of favor because it doesn't have much meaning when you think about it.

All forms of MS are probably progressive but some progress in a different way. The symptoms don't let up. If you're still having periods of time (days, weeks, months, even years) when you have no clear MS symptoms, you probably have RRMS.

They were giving the disease-modifying drugs to anyone with MS regardless of type but since those drugs haven't been shown to have any effect on progressive forms of MS, they no longer do that as much. Still, you will find neurologists who will prescribe them, maybe in the belief that doing something is better than doing nothing, and they probably won't do you any harm.

Is there any way that you can get a second opinion? Taking your test results and doctor's notes to another doctor and asking your question about possible early treatment seems like a good idea to me.

You might point out that you've heard that the earlier the treatment is started after diagnosis, the more effective it is likely to be.

You can probably find a doctor who will prescribe one of the MS drugs for you, even if there has to be a bit of fudging on how the prescription is written. Some doctors call it RRMS even when they know it's a progressive form. They want to offer you something, as I said.

Or maybe you never asked this doctor you have about being prescribed a disease-modifying drug? It sounds as if you don't communicate well with this doctor but if the lines of communication are still open, why not inquire?

Most neuros do want to see you if you're having worsening symptoms even if your next appointment was scheduled in a year. You might want to schedule another visit about the fact that you're feeling worse.

Hi Kelly

It might help if you checked out Healthshare (Healthshare | Empowering Australians to make better health choices).

It is intended for Australian residents - anybody can, for free, ask questions there and its Health Professional members will try to answer them.

Also, you can search the site for Health Professional members who might be able to offer you second opinions.

Thankyou for your replies. Its lovely to have people to talk to. Thankyou for the link. I will go have a look.

Cheers
Kelly x

It does sound like maybe you are just in a position where the lesions either are not in typical MS locations or there are not any new ones showing up to meet the "disseminated over time" part of the criteria. Hence the doc thinking it is likely MS, but the professor wanting to stick to the diagnostic criteria. I will say that my mom struggled with hypercalcemia for a while, and it was very debilitating for her. She was lethargic, very fatigued, and had a great deal of mental sluggishness until we got her calcium levels back closer to normal. So do pay attention to your symptoms and log them and their severity over time, to share with your physicians, but also consider that they could have other causes as well.

Thanks heaps, I am impatiently waiting to be tested again, hoping maybe I have hyperparathyroidism and this is causing all these issues, and there is No Ms to worry about.