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.

you might also ask to have your Vit D level checked. vit D is needed for neurological health and many folks with MS can have low levels.

also if you're having vision problem you could consider seeing an opthamologist. people with MS can have what's called optic neuritis. IF that's the case it can help towards a diagnosis.

Everyone gave you great advice! Diagnosing MS can be challenging. Lesions can be caused by many things other than MS such as migraines or even viruses. Looking up the MacDonald Criteria will help you learn how MS is diagnosed. Keeping a journal of you symptoms is a great way to pinpoint trends and can be very helpful.

Hang in there!