@Daniella_Gehman

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Daniella_Gehman

I heal too much?

So I’m a weird case. I was an out patient at UCSF here is California. My specialist was a very well known at the time for his treatments. Back in 2005 he would give is patient LSF a very high dose of steroids for a very short period of time. And it worked very will. I got better. Then in 2007 I had a second lesion. He than told me that’s is officially MS. He gave me the same treatment than starting me on a infusion treatment (can’t remember the name)after 2 years of this treatment. He left. After my MS specialist left UCSF they gave me another doctor who was just a regular neurologist. He was a total jerk who took me off my treatment and pretty much told me I don’t have MS and that he doesn’t need to see me anymore. So when I first got sick I was 21. At this point it was probably 2010 and I’m 26. I was told by him. It’s not MS because my spinal tap is normal and I heal too well. After this I just went “fine! Whatever” I would have bad weeks off and on for the next 4 years. Some burning. My vertigo never went away. Things like that. Then in 2016 I saw another doctor because I was getting a stabbing pain in my head and it was getting worst. New doctor gave me a MRI. No new lesion. No scaring at all. So now I flash forward to the present 2020. I just got off my new neurologist zoom call. I told him everything. He looked at my old scans. He could see the lesion in 2007 then looked at my 2016 and he said it was like it was never there. He ordered new scans for me. He just thinks it’s so weird that my Brain looks so normal but I still have some many issues ( my eyes shake. Which makes me always feel dizzy. I can’t even walk a straight line. I get stabbing pains in my head.) what is going on with me? I feel like a blanket has been pulled out from under me. After my old neurologist left I have felt like I’m falling down a rabbit hole

JamesC83

@JamesC83

Sounds like typical MS to me. As far as I know, the amount at which you heal has no bearing on whether it’s MS or not, it’s just a real positive if you can heal because the damage can be reversed. But the point is the damage was created in the first place! You really need to ditch that dr and find an MS specialist. It’s important In order to make sure you get the right treatment and support.

watsoncraig

@watsoncraig

Get a specialist. Myelin does not regenerate so you cannot get better

Ralee

@Ralee

@watsoncraiq in the early stages of the disease with RRMS the myelin does and the ability the remyelinate, just not always at 100% and it's usally thinner. Over time the bodies ability to do this decreases.

watsoncraig

@watsoncraig

@ralee I stand corrected, us PPMSrs are diagnosed past the remylination phase