What would this CIS, my dear medhelpers?

[marlo34]

Hi all.
I do not see my neuro until the 28th, and reading many of your posts and answers has been VERY informative.

I have a question:  What constitutes an attack?

I had an onslaught of m.s like symptoms in March which subsided in April...May and June were okay, but July and August (esp August) has been rough.

Does this sound like CIS?

I am not yet dx'ed.

I only have lesions in one part of my brain--the periventricular region. My neuro told me that the way my two lesions looked, and how one of them changed in size in relation to the vessel, looked very much like MS. It is suspected that I have lesions in my cervical spine.

(Also, for those of you with leg issues--did you have pain in the upper portion of your leg? Did it seem like your leg was failing on you? I have abnormal gait, and I think this is causing my leg issues)

[marlo34]

Thanks super!

[marlo34]

Thanks ladies. Just when I think I "know" something about m.s, I realize I know nothing! I go back to work Monday--and I look forward to having that distraction!

[supermum_ms]

At this stage, I dont think you can look at CIS, if your neuro suspects spinal lesions, thats usually because your showing clinical signs of spinal lesions. That plus the periventricular brain lesions would be more than one clinical event, which is what CIS is.

This is a good article to read on CIS

http://www.mstrust.org.uk/information/publications/factsheets/cis.jsp

Cheers........JJ

[Lulu54]

CIS would be determined by your neuro - it sounds to me, though, that this is not the first time you have had these problems and if this is a second round of problems, that would take it out of CIS and into more a clinically-definite, if there is enough evidence to support a diagnosis of MS.

I know that sounds like I am talking in circles, but that is how this disease is. THere are rarely any straight line answers except for the few of us who present with all the classic symptoms and exam results at one time.  I was lucky and got out of jail free, immediately.  Most folks have to hang around and wait for all the signs to align.  

CIS gives the neuro the option to treat you if MS is highly suggested but the final evidence isn't firm yet.   The 28th will be here soon - keep taking the time to learn more so you can have an informed discussion wit hte doctor when the date finally arrives.    

[marlo34]

Any opinion on if that sounds like cis though?

[marlo34]

I agree...I agree, I did ask my nuero initially if my sx were from being stressed. He also is a psychiatrist of sorts....he told me, no, I wasn't he "type."
This is stressful or sure. Maybe massage would be a good way to relax.

[kwarendorf]

Here's my relax context.

"If I have MS there is nothing I can do about it. It isn't a fast moving disease. I'm seeing the right doctors. I might as well relax."

Stress is not good for MS :-)

If you're seeing your initial neuro make sure you have a list of changes since you last saw her/him.

Just one man's opinion.

[marlo34]

This post was a continuation of a conversation...sort of.  Kyle, the neuro I'm seeing on the 28th is my initial neuro. He's great.  
Relax? That advice always slays me. :)
Thanks for the responses.

[kwarendorf]

Hi - Ahab

MS is a very personal disease. By that I mean that if you ask 100 of us to describe our MS you will likely hear 100 different stories. There is going to be some overlap. Itching for example.

I had an itch on the back of my neck that extended down to the back of my shoulder. Nothing would satisfy this itch. No matter how hard I scratched it didn't put a dent in the itch. The symptoms we experience are dependent on where our lesions are.

Rather than try and research every little thing that was wrong, during my last relapse a year ago, I decided to focus on the three biggest, in terms of my ability to function. They were Double vision 24/7, severe loss of leg strength and overwhelming fatigue. All of the others were documented but when speaking with my doctors I concentrated on the big three.

As Sidesteps mentioned for something to considered a relapse, the new or worsening previous symptom(s) need to last for at least 24 hours. To distinguish a new relapse from the continuation of a prior one, there needs to be 30 symptom free days for a relapse to be considered new.

The 28th is not that far off, and nothing about MS happens quickly. I know it's hard, but try and relax. If you haven't already done so, I would put together a folder with all of your precious test results, including radiology reports. Also if you haven't started one, start a journal including times, dates and symptoms. The more you write down the less you are likely to forget when your with the doctor.

Deep cleansing breath :-) Good luck on the 28th!

Kyle

[marlo34]

Oh, and I almost forgot: itching! I get these strange bouts of intense itching now. This is a new thing for me.

[marlo34]

Wow. It sounds like we have very similar legs.

My right leg has the same issues yours does, but my left leg has numbness behind the knee area and in the foot. My neuro told me I have parasthesia on that side (left.)

April/May:  Numbness, tingling, spasms, full finger numbness, loss of finger dexterity, blurred vision, flashing lights, cognitive problems (not remembering anything
Heat intolerance
Numbness below the knee



July/Aug:  Right leg issues (pain/weak), back issues, walking difficulty, cognitive issues (memory), facial numbness on left side with foot numbness on left side

three episodes of banding in my rib area (AWFUL!)

Spasms in my face--(myokimia)

Spasms in my body

Quick, horrible strange painful sensation in my throat



Thoughts? Oh and thank you Sidesteps for taking the time to answer my questions!

[Sidesteps]

Sorry for the typo's. I am healing from a flare and tired.

[Sidesteps]

Hi again - An attack is a new new or worsing neurological symptom that last more than 24 hours.

Please describe the differences between how you felt in March vs July/August? What was different about this symptoms.

Yes - I have a right leg issue. I am not sure where the lesion is as it was not picked up in my MRI. I have right leg "lag" and a mild foot drop.My leg lacks coordination. Strangely, my left leg from the hip down to my toes has decreased sensation and numbness. My left big toe right now is nearly numb. (Odd!)

I will say that deciphering a flare from a pseudo flare is not easy. Example: My initial symptoms was myoclonus (sleep starts) that progressively became like turrets.) Eventually, on vacation, I crashed with a list of symptoms that are more than a page long. That flare lasted 3 months or longer. I was very sick.

After that, I had so many pseudo-flares due to the weakness caused. I was very weak and it showed every month with my monthly cycle or any amount of stress on body.

It took nearly a two years for me to determine the differences between pseudo-flares, flares and just chronic symptoms from the damage. It's hard to figure out.

I figure if it takes me (and I'm a pretty self aware person) to figure out the differences then it must be REALLY hard for a doctor who is neutral, under regulation and needing to have our best interest in mind. Not easy.