Reintroducing Myself After A Frustrating Year

[Pistachio]

I lurk here but don't post, really. Mostly because I felt like a "poser". I had ON in 2013 but the was bitten by a tick (bullseye rash, etc) in 2015. Anyway, long story made short.....I was fine until summer 2020 when I started getting jelly legs. Vibrations, internal tremors, etc. Since then tbere have been many tests, MRIs, a three month treatment with oral antibiotics, and most recently twenty-one days of IV antibio - all for Lyme.

The jury is in......I meet the diagnostic criteria for MS. A new lesion showed up on my MRI last month. Thankfully, they're all in my brain and none on the spine. The neurologist says I have a "mild" case of MS. No DMTs recommended at this time. Next I'm to have a spinal tap to test the oligodendrocyte cells for Lyme. He wants to see if I also still have Lyme lurking.

I'm fortunate that my biggest complaint is only fatigue and mild cognitive problems. I'm still walking, skiing and otherwise able.

[pennstater]

The jury is in......I meet the diagnostic criteria for MS. A new lesion showed up on my MRI last month. Thankfully, they're all in my brain and none on the spine. The neurologist says I have a "mild" case of MS. No DMTs recommended at this time. Next I'm to have a spinal tap to test the oligodendrocyte cells for Lyme. He wants to see if I also still have Lyme lurking.

I'm fortunate that my biggest complaint is only fatigue and mild cognitive problems. I'm still walking, skiing and otherwise able.

You definitely have had a lot going on. Also glad you were persistent in doctor visits. There is so much overlap with Lyme's and MS symptoms. Hope the remaining ones lift for you.

IS your neuro an MS specialist? I would love to know why he thinks "mild". MS can be mild til it isn't. Disease course is unpredictable. Usually a DMT is recommended to prevent any future relapses and progressions. Not to cause alarm, but I would consider getting a 2nd opinion on the DMT.

Thanks for the update and lots of luck.

[Pistachio]

Yes, Pennstater, he's an MS specialist. Hmmmm......now you have me wondering.

[KoKo]

Hello Pistachio!

I've wondered where you've been. Thanks for coming back and updating us.

If I understand correctly, you are DX'd with both Lyme and MS. Sounds like a double bummer!

I wonder what the spinal tap, to test the oligodendrocyte cells for Lyme, will show.

Can Lyme be totally eradicated from your body now?

Hope you don't mind my asking, did you also have a spinal tap for MS O-Bands?

In any case, glad that you are back on the boards here.

Don't hesitate to post when you feel that you want to, or need to.

That's why we're here.

[Pistachio]

Hello Pistachio!

I've wondered where you've been. Thanks for coming back and updating us.

If I understand correctly, you are DX'd with both Lyme and MS. Sounds like a double bummer!

I wonder what the spinal tap, to test the oligodendrocyte cells for Lyme, will show.

Can Lyme be totally eradicated from your body now?

Hope you don't mind my asking, did you also have a spinal tap for MS O-Bands?

In any case, glad that you are back on the boards here.

Don't hesitate to post when you feel that you want to, or need to.

That's why we're here.

No, I've not had a spinal tap at all, yet. The MS diagnosis was made based on two MRI spaced a year apart and my history of optic neuritis. The spinal tap will be checked for both MS and Lyme. My neurologist was of the opinion that if we're going to do a spinal tap we might as well test for both.

As for your question regarding getting rid of Lyme. It's a controversial topic. Some say it can be eradicated but there's been a shift and now many doctors think it is forever but can be managed. The concern both my neurologist and my infectious disease doctor have is that not only do I have MS lesions but also neuro-borreliosis (neuro-Lyme). Apparently the lesions are different for each disease and usually occur in different areas of the brain. The spinal tab will give us 100% answers.

[KoKo]

No, I've not had a spinal tap at all, yet. The MS diagnosis was made based on two MRI spaced a year apart and my history of optic neuritis. The spinal tap will be checked for both MS and Lyme. My neurologist was of the opinion that if we're going to do a spinal tap we might as well test for both.

As for your question regarding getting rid of Lyme. It's a controversial topic. Some say it can be eradicated but there's been a shift and now many doctors think it is forever but can be managed. The concern both my neurologist and my infectious disease doctor have is that not only do I have MS lesions but also neuro-borreliosis (neuro-Lyme). Apparently the lesions are different for each disease and usually occur in different areas of the brain. The spinal tab will give us 100% answers.

Thank you for sharing your info, Pistachio.

I have a better understanding.

I'm sorry that you have to deal with this stuff.

Hopefully the after effects of Lyme disappear in time, and MS symptoms remain minimal.

Keep us posted as you learn more. Thank you Pistachio.