Do I have clear understanding of my LIMBO status

[Lori Lee]

Ok I am several weeks past my MS neuro appointment and I have a couple of questions.

I think I am normal as I have replayed the visit in my head over and over.

I think I understand where I am at currently (in limbo) but I guess I just want some confirmation.

To my knowledge, I have 4 lesions. Two which the MS neuro said she could count toward a DX.

Left sided weakness which Physical therapy did not help.
She has diagnosed me with gait disorder and spasticity as well as Trigeminal Neuralgia. I have bladder issues and balance issues.

I have tingling and numbness and bouts of fatigue that leave me looking for the closest place to lay down immediately.

They have ruled out every other possibility and now I am at we will watch and see.

MY Question is: Are we waiting on me to have another flair? Or develop new lesions?

I think this is what we are waiting on but just wanted to be clear about it. Most days I am thankful I have so much of the testing behind me and I don't have a whole host of DR's. I am currently with the MS specialist and my PCP.

So I guess as I rethought everything I was just wondering if I were clear on what I am waiting on.

I appreciate any of your thoughts.
Blessings.

[lynnepynne]

Hi Lori,
jeez, I wish I was as clear in my head as you!!!

Just two questions:
I remember some talk of pos. ANAs and heart murmur. Is that all clarified? Have they ruled out Lupus and CTD stuff? Just curious because I see a rheumatologist too (but nothing like the stuff youre going through)
also: can you tell me out of curiosity about your TN? You can send me an email (let me know and I will list my e-mail in my info) I have had some TN stuff and would love to hear what others have experienced.

Hope things stay clear and get even clearer so you can take action.
Your pal in Limboland,
Lynne

[Redwings]

MY Question is: Are we waiting on me to have another flair? Or develop new lesions?

From your description, yes. There is evidence of dissemination in space. It looks like you're waiting for proof of dissemination in time.

[0485c10]

I think either or will do--if the flair or lesion could not have been caused by something else.

are you scheduled for future MRI to see if another lesion has formed asymptomatically? like in 6 months or a year?

[Lori Lee]

Awww Lynne Pynne ((Hugs to you)) I can't believe you remember the other stuff! I have a hard time placing people in the forum with their symptoms. A few stick with me but not many!

Both My MS specialist and the last rheumy agree that my symptoms are not caused from a rheumatic disease. Or at least at this time. My ANA is 1:40 which is borderline positive and I have Reynauds which the rheumy speculated could cause the the positive ANA. Also My MS specialist said her ANA is the same as mine so she dismissed it.

The heart murmur was small and I was told not to worry about it after an echo. That my heart is in good working order.

I have been dismissed by the Rheumy unless something else comes up.

The MS specialist is wonderful. I have seen her twice now. I will see her again in 3 months. I am guessing that she will not repeat the MRI until 12 months. Unless I have another episode. This last one was done this August with no change but I had a whole host of symptoms in April which cleared up with 4months of prednisone(given by my PCP before my first MS neuro appt.). So now I am wondering if the steroids changed what my MRI would have looked like? Just wondering out loud .

As far as the TN goes: I have had some previous spasms in my cheek bone area with no pain but thought they were odd. In August I had an episode while resting that my husband insisted I go to the ER over.

It began with stabbing burning pain in my cheek that would discharge in my gumline with electrical shock pain. It would pop and feel hot like something burst in my gums. I went to the dentist and they pulled an extra tooth that I was supposed to already have out.

The dentist wasn't sure the tooth would cause the type of pain I was describing and when my husband told the MS neuro about it (I forgot). She was all over it. She said" Now you have my attention". Told me it wasn't my teeth not to have anymore pulled.

Redwings, Thank You. I think what I understand you to say is that there is evidence to support a dx but that I now need evidence over time. Is that correct?

I think I covered the questions with a chapter.

Thank you!

[Spydre]

Steroids won't change your MRI. Steroids only help with the inflammation, not the nerve damage.

[Lori Lee]

Thank you, Spydre. I hadn't heard that they would until I read something today. Then I wondered .

I am still trying to make my brain understand what Redwings shared but when I get the time I will look it up. I am a little fuzzy tonight with my thoughts.

New Thoughts or information are like a puzzle to me. Sometimes I am not interested in working on them but they keep coming at me until it bugs me so much I have to try and research them . I am amateur for sure.

The steroids certainly helped my inflammation and I felt much better on them.

[derrie]

Regarding steroids and MRIs, my neurologist is withholding steroids (even though he says he is almost certain they would help alleviate some symptoms) until he is done running me through the MRI machine a gazillion time because he doesn't want to make anything hard to see harder to see.

That said, I'm in the process of trying to diagnose my mystery neurological issue, so maybe it's different if you're just looking for MS lesions than if you're still trying to figure out what is up?

Or is my neurologist an evil sadist who enjoys me being in constant pain?

(Kidding!)

Anyway, if anyone has a definitive answer on that, post away. Till then, I'm just going to keep thinking of my neurologist as evil.

[Lori Lee]

Derrie You made me smile! Thank you. I would love to know the conclusion of the steroids/MRI debate .

For now I can't do much about it as my MRI has come and gone. Until the next time.....