More like I have ЯRMS... vry ~speshal~

[Chowda]

Thursday I saw my neuro for the 2nd time. I never mentioned, there are 2 neuros. Younger one that does all the examinations, the senior and my neuro on paper puts all the work, treatment, med etc. orders through. I don't think the younger one is residency, I think the older one is more specialized. She's not in the MS building. She's in a building that is called 'Professionals... something'

This all matters. I was dx'd Dec 9th and saw her Jan 16th. I heard that's fast. Also my first med is Tysabri. When I saw them for the first time that was the best I felt in months. I call it a remission when I'm less dizzy.
They both said I was advanced and aggressive based on lesions, symptoms etc. And I felt the best I had in MONTHS!

On Thursday, I got to ask more questions. I was told I'm different and unique. I used the term ~special~ because I'm a comedian on MS.
They explained that I don't have relapses/remissions like normal RRMSers. I have so many symptoms I am ALWAYS relapsing.

I mentioned they gave me the impression I should be prepared to never work again on first visit. I think I'm starting to understand why. They also said we have to wait until if/when Ty kicks in then they can better address specifics. Right now there's just too many variables.
Main neuro also explained that's why I had ~12+ tubes filled up on a blood test, she assumed I must have some other disorder. But I'm all clean. This is when I slipped in I'm -HIV, that was tested. I'm funny. A pro.

Also, I had my spinal MRI and they said radiology had reports that were conflicting on one lesion. But I have quite a few spinal lesions. More thoracic and one is fully active, whatever that means.

So I'm RRMS but I don't really remit, but its not progressive.
I don't have ON, there are specific lesions messing up my eyes. They don't move or dilate in sync. I could talk more on them.
I don't have PBA, I have lesions in my brain that are on parts that control emotion. That's why it remits/relapses.
My memory is terrible because of specific lesions.
I no longer have incontinence, I have the opposite but feel I always should go. Its from...wait for it... specific lesions on my spine.

These are what they both believe so far but admit if Ty works like it should, they can get a better idea and it might change.

In closing, I should change my sig to:
Too many lesions to count
And the younger neuro did say I pretty much 'have ALL the symptoms at once' also how they never laid eyes on a brain like mine

I'm very ~speshal~ guys
Go to my profile, you can see a GIF I made of only MRI on my brain from Dec. Its one of many different views and I'm told its on crappy software and there's tons that can't be seen because only radiologists have machines to view them fully.

[misslux]

:S

Yeah, the older neuro is the Deputy Division Head. I don't think she normally accepts new patients. I know the Division Head does not.

Crossing my fingers that Ty stops your MS in its tracks. Stupid crappy disease.

[Chowda]

Well, I said the dizziness/vertigo is my most debilitating symptom and they've only seen me when its less.

They said to call those my remissions because that's the best until/if Ty kicks in and kicks butt... or brain?
And I've been less dizzy for a month now! Longest ever! This is my remission and I'm still getting new symptoms even.

Deputy division head... ~very speshal~

[KateA2]

I'm sorry you are having such a crappy time of it...I do enjoy your posts though, colorful language for the win!

Seems like Ty works more quickly than some of the other treatments? I hope it helps you get some relief soon, let us know how it goes

[Chowda]

I'm still in my version of remission!

And I'm staying positive. I am a person with MS/a disability. NOT a disabled/MS person. This does not define me.

One day I'll get a real remission, not this always relapsing as neuros put it.

I did more research on my neuro and she's director of quite a few things at the hospital and universities. Its good that I'm seeing someone high up on the ladder. Bad that I'm seeing someone high up on the ladder.
You feel me?

[KatieAgain]

What you are describing is sort of what I went through last year. They called them Cyclical Flares...one right after the other. It was not realized until I got to see an MS specialist. So yes, it is very possible you will remit once the TY really kicks in. For me the 2nd infusion did it and no more flares.

Ask you Neuro for some Valium for the dizziness. You can read my post on dizziness in the Symptom Forum under dizziness and vertigo. It covers the different types of dizziness. With your number of lesions, it is probably a safe bet that it is indeed CNS Dizziness. Yes...it can be very debilitating!

[gazdajl]

Thank you, Chowda and Katie!

I have also been trying to explain these weird 'cyclical' symptoms I have been having for over six months now...and I have never heard of Cyclical Flares before. Thank you!

I am going to research that more now! I am still seeing a general Neuro...the MS Dr. won't see me until, and if, I am diagnosed with MS.

Also...it kind of bothers me that the Neuro doc, hasn't ever, that I know of, looked at my 'complete' list of symptoms. Like you Chowda, I always have many symptoms, somewhat more subtle, then I also have a cycle of a different, but more major symptom, primarily having to do with my legs, it seems.

I almost think that I don't have any real flares (I have been tested for the major mimics, all normal), because it seems my daily walks, are what aggravate my leg symptoms, primarily.

Anyway...I don't mean to steal your post, Chowda...just wanted to say a big 'thank you' for it (and you too Katie!), and for your sense of humor...hang in there, all! Love and Light...Jan.

[misslux]

Did she address meds for symptom management?

And you plagiarized my IM to you Re: good and bad, lol! But it is true, you are in the best of hands!

[mjan]

First of all, Chowda and all with this type of MS pattern I am sorry for ALL you are enduring. BUT I do appreciate anyone with humor as a way to cope with life! Good for you!!

Just wanted to add that I have had dizziness whenever moving my eyes, up then later in any direction. And I had 6 months of Vertigo but was not diagnosed then.

Just last year I was given an order to get Pt from a therapist trained in Vestibular therapy. I had the reduced # of visits due to $$, but after all done in 1 month I started to notice results. Then shortly after that I noticed NO MORE dizziness whenever moving my eyes. Yay!!!!

Just wanted to add that in case you can try it too. Hope so.

Again, I love your humor and am available via email in profile if you need extra support. But I imagine you want to hear from those on TY.

Good luck and may you soon notice improvement!

Warmly, Jan

[Chowda]

Thanks everyone. And misslux, its like a compliment to have your material stolen... Right? Yes, definitley

So my neuro never said cyclical, she said I pretty much have all the symptoms at the same time. They get better, I'm less dizzy now key word less. I never really stop relapsing on any symptom. I follow up with her in September so she can get a better understanding if ghe Ty works like its supposed to.

I did some more Googling and she is pretty high up there on Canadian neurologists ladder on lots of fields. She could not give me precise answers until/if Ty kicks in.

Also I have two OTs, the hospital one emailed md exercises to help with dizziness, we'll see!

[misslux]

Also...it kind of bothers me that the Neuro doc, hasn't ever, that I know of, looked at my 'complete' list of symptoms.

Have you ever presented a full list, on paper, to your neuro? that way nothing can get missed or ignored.

I am a big fan of faxing in an "agenda" with updates, symptoms, questions and requests a day or so ahead of time and then bringing the print out to the appointment and going through each point. It gives your doctor a chance to know what you want from the appointment and it ensures that nothing is missed or forgotten.

I also keep a running list of symptom changes and questions on my phone and iPad so that I don't forget to add anything on my next appointment update.