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Is my MS aggressive?

Hi

I am after some advice, hoping somebody can help as im feeling very confused.

I had a vertigo and coordination issue and was sent by neuro to have MRI (head, c-spine and thoracic with no enhancment)

Results came back and i had a single lesion on my brain -neuro said not MS as only 1 lesion ans MS means there has to be multiple (guess the clue is in the name)

Wanted me to have another head MRI with contrast - by the time this happened was 6 weeks after initial scan. Results came back and lesion had increased ever so slightly and was still enhancing, also was a new lesion enhancing.

He then referred me to ms specialist who i saw 2 weeks later. He was concerned about growth and told me not to worry and go and enjoy life! (WTF!) He consulted the local neuro-oncology multi disiplinary team and came up with a plan of action.

I had a Lumbar pucture and a further MRI of head,c-spine and thorac with GAD. Meanwhile neuro rang to tell me he and the others didn’t think it was a tumour and it is something that is treatable.

Few weeks later met neuro again, 2 original lesions had stopped enhancing, however was a new lesion that was enhancing.I ahd not suffered any further symptoms despite new lesions but he said this was normal as they could be classed as clinically silent? He gave me a confirmed dx of MS. He was reluctant to give me a ‘type’ as he wanted to wait and see before defining it.

My question is does it sound like RRMS/PPMS also does it sound like an aggresive form of MS? I asked him these questions and he was a bit too nonchelant to be re assuring.

Any blanks you can help me fill in i would appreciate, it’s been a long process and i would just like a few more answers.

Sorry for the long post, thank you in advance.

Hi To be honest I think it’s very difficult to say what sort of MS we have when diagnosed. I was diagnosed following a severe relapse last year with vertigo and balance problems. Initially my neuro said my ms was very mild and that I was at the bottom if the scale on severity. I was relieved at the time but unfortunately within a month after that I had another really bad relapse, my ms was defined as highly active, aggressive and I immediately started on Tysabri! I was gutted as you can imagine after being told it was mild and it obviously isn’t! I don’t wanna dishearten you but I’d rather be told nothing and wait to find out than be told something completely wrong. Hope this helps x

Have your symptoms improved or disappeared?

I was diagnosed RRMS because I have had symptoms which went away entirely and then came back again. I had (at my last MRI) 3 lesions (2 spinal, one brain) but the neuro didn’t really talk too much about the types of lesions or anything.

I had optic neuritis and it cleared up and left no damage to the optic nerve. It went away in October and came back in March.

So I think the main thing with RRMS is that your symptoms do tend to improve or clear completely. My MS nurse said that they don’t consider damage to be permanant unless it’s lasted more than 12 months.

So if your symptoms are still ongoing and haven’t let up and you have no new symptoms, it’s hard for them to know if you have RRMS or PPMS. I would imagine they will have to wait and see before being able to confirm the type of MS you have.

I too am in your shoes. I was dx with rrms in nov and had a contrast mri done for which i am due to get results next tuesday. Ive been informed i could have highly active ms but will know more tuesday. My symptoms are constantly there and no longer improve. Ive also been told the nerve damage is permanent and will not improve. Lets hope for the best

Hi

Thank you for your input. I have had 3 relapses in 12 months since i started noticing symptoms.

The symptoms do lessen in between relapses (some do not - including vision problems) but i don’t think they ever go away.

First thing i noticed to be wrong was my balance, which got so bad i could not walk, but improved to the point i could walk although very unsteady and having to funiture walk inside. Outside i need somebody with me to hold onto.

Not sure if this is remmisson, sure does not feel like it.

I would help to know if it sounds aggresive/highly active as then i can maybe push for tysabri as first treatment when i see neuro again, i suppose its not up to me and he will know the best way forward? I do not enjoy the helpless feeling i am experiencing.

Thanks again for your help and sharing your experiences with me, good to know we are not alone.

MS can go through stages of being active for a while (months-years) and then going quiet. Aggressive MS doesn’t tend to go quiet. It also tends to cause more severe symptoms.

It is quite common for people to have multiple relapses in the couple of years around their diagnosis. Telling the difference between this normal level of activity and an aggressive form of MS must be really tricky for neuros, but I guess they know from experience what’s what.

If you want Tysabri, I think you need to emphasise the debilitating nature of your symptoms and that, while you see some improvement between attacks (which suggests you are RRMS), you do not recover well. Whether or not that is sufficient, I have no idea, but it’s worth a try.

Btw, “clinically silent” just means that there were no observable symptoms from it. This is common in MS.

Also, do ask to see a neurophysio to get help with your balance - there are exercises that can help a lot. (Your GP or neuro can refer you.)

Karen x

Yes being a neurologist is not a job i would like to take on, they are ridiculously intelligent and working with a very high level of stress and i think unfairly treated sometimes. All though there are always exceptions to the rule.

Like you all say the answers will come in time, just so much waiting to be done.

Hope everyone continues on their own journeys well and thank you for the advice.