MS diagnosis

I got my lumbar puncture results back and a call from my neurologist. I do in fact have Multiple Sclerosis (MS). This has been after years of abnormal MRIs with lesions but my neurologist insisting I didn’t present with MS. Because I have fibromyalgia and chronic migraine- so a lot of overlap in symptoms. And no real real sign to indicate onset like a typical case. Just the onset of my vertigo. And no real strong relapses to point to MS either. So he had a hell of a time saying MS. That isn’t something you want to misdiagnose someone with. He was positive I didn’t have it. I wasn’t sure. I was sure he was sure. And he predominately sees MS patients. And I knew I wasn’t progressing like a MS patient would. But I had unexplained things too. So I waffled.

The last MRI showed no more lesions. The last assessment he did I passed quite well. And actually I was feeling better than I had been in a while so that was no surprise to me. That is when he suggested the lumbar puncture. Because I said I had been having leg weakness, especially in heat and trouble walking- like a lot. But by the time I saw him I was walking up the stairs to his office- which before I could barely get up four steps. So something weird.

Still he didn’t think MS. I really wondered. My legs had never felt so weak before. I recalled the falls I had on my last holidays where I was unable to get up. I recalled the recurrent numbness in my hand that happened Again and was just now improving. I recalled the insane fatigue. The bouts of severe vertigo and balance issues. He was right, none of it screamed MS but none of it was normal for me either. And none of what I have explained the leg weakness, walking issues or drop foot.

So I am glad he sent me for the lumbar puncture. I think he assumed it was going to be fine. And partly so did I. I hoped so anyway. So I didn’t worry about it.

But it didn’t. So this is a thing I have to deal with.

In the beginning

When my MRI showed lesions the first symptoms I had other than intense fatigue was insane vertigo. This was five or six years ago. That is why I went off work. I couldn’t function with the balance problems, the vertigo and even sometimes falling over. The vertigo was exhausting and severe. But it lasted for a while. And even triggered vestibuar migraine attacks- which wasn’t good because I still get those.

While in vestibular treatment is when I developed drop foot. Slowly at first and then it just got worse.

Tingling in the legs was likely the earliest of symptoms I had and most people brushed it off as a fibromyalgia thing. It is pretty constant now. Maybe it is a fibro thing.

What the neurologist said

He said it is in the inactive phase according to his last assessment of me and my last MRI. That my case shows a very slow progression and will be very mild. Which is why he had such a hard time assessing me. Although, also, I don’t think most of my onset symptoms were typical aside from the drop foot. And I think the comorbid conditions I have mask a whole lot and are going to be a complication with me assessing relapses. Which hopefully like he believes will not be frequent. He doesn’t want me on medication until I do show a relapse. And since I have no idea what one feels like, that’s going to be tricky indeed. I think he wants me to present with some other obvious symptom or some obvious relapse before considering medication.

I think one thing that pointed to a relapse a while ago was my hand went numb for more than 24 hours and my vertigo went nutbars. And fatigue as well. As well as some other unusual symptoms. But some of those symptoms will be hard to point to for me to know one way or the other. And some will be more obvious.

I recently had some serious troubles walking and extreme heat intolerance. That had to be one. I have never had issues like that before.

I have no idea how I am supposed to tell a relapse from just normal symptoms I have from fibromyalgia. Or worse, I fear I’ll ignore them thinking they are nothing to worry about. Like the vertigo.

I may have to track symptoms that are obviously not fibromyalgia and problematic in a journal and mention them to my doctor to mention to him.

As it is. Watch, wait and figure this out for now.

See also

Lumbar Puncture