Diagnosed with CIS today, more tests to come - things to know/ask?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
User avatar
NHE
Volunteer Moderator
Posts: 5254
Joined: Sat Nov 20, 2004 3:00 pm
Contact:

Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by NHE » Tue May 14, 2019 11:51 pm

AmbiCat wrote:
Tue May 14, 2019 1:59 pm
In terms of actually exercising, when would you say it's safe to try doing something like bike riding again? Is it too dangerous to attempt with any tremor at all, or might it actually help overall by stimulating a lot of the leg muscles?
Do you have access to a stationary exercise bike? If so, it might be good to try that first in case your balance is off.
AmbiCat wrote:
Tue May 14, 2019 1:59 pm
My neuro is running pre-emptive bloodwork in case the Tecfidera request does go through so I'll be able to start it right away if everything checks out. I'm not hopeful they will approve it, but I should know which DMD I'm going on by the end of next week.
Well, your white blood cell counts are going to be low from all the steroids. It might be best to wait a little while so things can normalize so then you'll have a good baseline to compare to when/if you start taking Tecfidera as it's known to cause lymphopenia.

AmbiCat
Getting to Know You...
Posts: 16
Joined: Thu Apr 25, 2019 12:22 pm

Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by AmbiCat » Wed May 15, 2019 4:58 am

NHE wrote:
Tue May 14, 2019 11:51 pm
AmbiCat wrote:
Tue May 14, 2019 1:59 pm
In terms of actually exercising, when would you say it's safe to try doing something like bike riding again? Is it too dangerous to attempt with any tremor at all, or might it actually help overall by stimulating a lot of the leg muscles?
Do you have access to a stationary exercise bike? If so, it might be good to try that first in case your balance is off.
AmbiCat wrote:
Tue May 14, 2019 1:59 pm
My neuro is running pre-emptive bloodwork in case the Tecfidera request does go through so I'll be able to start it right away if everything checks out. I'm not hopeful they will approve it, but I should know which DMD I'm going on by the end of next week.
Well, your white blood cell counts are going to be low from all the steroids. It might be best to wait a little while so things can normalize so then you'll have a good baseline to compare to when/if you start taking Tecfidera as it's known to cause lymphopenia.
I don't unfortunately, but I live across the street from a flat bike path so it might not hurt to try that next week when the steroid jitters wear off.

The ER did check my CBC in that first week when the numbness went up to my chest, but yeah it hasn't been checked in the 2.5 weeks r so since with all the steroids.

Not sure what blood tests he's doing, should be getting the paper in the mail in the next day or two. I just know it's something he has to test in case I go on Tec.

Edit: Start of day 2 after the end of the third round of steroids, and the numbness is progressing again. Places that haven't been numb in over a week are numb again. Hoping this normalizes.

The tests the neuro is running are liver function and one for the JC Virus.

vesta
Family Elder
Posts: 619
Joined: Thu Jul 12, 2012 9:10 am
Location: Paris, France
Contact:

Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by vesta » Thu May 16, 2019 8:44 am

AmbiCat wrote:
Fri Apr 26, 2019 3:28 pm
My neurologist wanted me to look more into what CIS is, after ruling out everything that could've caused my numerous symptoms and increasing disability over the past week (first time this has ever happened). My C-Spine MRI yesterday showed a signal change in my spinal cord, so today he started me on a high dose of steroids to try to break the symptoms.

I've read that the probability of progressing past CIS and into MS is 60-80% if the MRI showed damage. For those of you who started out with CIS and were later diagnosed with MS, how long was it until your second set of symptoms started? And did your doctor start you on MS meds from when they first diagnosed you with CIS, or did they wait until your second episode?

I'm really lost at the moment. It's been a rollercoaster of emotions this week, since all of it started 7 days ago. Is there anything that I should definitely know, or any questions I should ask when I see my doctor again next week? He's going to have an MRI of my brain done next, and probably a lumbar puncture at some point too.

At this point I'm stuck between half relieved that I finally have a possible answer on why I haven't had control of parts of my body for the past week, and dreading my life to come if I really do have MS at 29 years old. Any advice on things to ask for or to read up on would be appreciated.
On reading your post I note that the MRI revealed "a signal change in my spinal cord". I suggest having the area in question massaged with the aim of releasing the muscle spasms which I believe are at the origin of this « attack ».

Perhaps you and your Neurologist can consider the following information.
Scientific knowledge often evolves through fortuitous «accidents. » The accident in this case is that 1) I relieved an MS attack inadvertently through a Shiatsu massage, 2) my neurologist recognized an unusual medical incident had occurred which was confirmed by 3) a world renowned Neurologist before a class of MDs and 4) I kept a journal concerning this event 5) which I compared to my medical file all of which 6) I brought together while writing my MS healing blog.

Why ignore this incident ? What harm could a massage do you ? Why not ask your Neurologist to oversee the « treatment ». Maybe you can avoid more steroids ?

Below is a truncated version of a May 5, 2013 blog post on https://www.mscureenigmas.net

« Dr. Christopher Pallis and Shiatsu Massage

My first known MS attack paralysed my right arm. My San Francisco HMO Neurologist said that mine was
an unusual case and asked if I would come to be examined by a renowned British
Neurologist who would be giving a Master Class at the Hospital.  
After examining me Dr. Christopher Pallis drew on the board a
tube like structure, making a partial “bite” in it, explaining that this 
was an unusual case since the lesions didn’t go all the way through as 
evidenced by the fact that the right leg was not affected like the right 
arm.

Dr. Pallis had drawn a spinal cord on the board. This was 1980 before the use of the MRI. He didn’t have an explanation for this anomaly. Today, I do.

How is it that the “attack”didn’t “eat through”the entire spinal cord 
which would have left me unable to walk?

My answer. The Shiatsu massage of 38 
days previous. My notes show that when I went to the Emergency 
room on May 2 my upper spine burned fiercely. After the massage on May 9 I felt 
a total relief. The massage must have stopped the blood back jets onto the spinal cord. By May 14 I was feeling much better. 

I inadvertently saved my legs by 
getting a Shiatsu massage. Yes, the MS attack struck the spine on which the massage could be particularly effective. My Neurologist was puzzled, he was getting ready to launch me into steroid 
treatment, but then the whole process stopped. No one asked if I had done 
anything to arrive at this. Too bad Dr. Pallis didn’t think to ask. 

I now believe at the first onset of MS symptoms one should get a massage.Why not? I
can’t see any possible harm, and the benefits may be beyond anyone’s expectations." 

Truncated version of the May 5, 2013 blog post.

Wishing you the best in your current struggle,

Vesta
[

ElliotB
Family Elder
Posts: 1920
Joined: Mon Feb 03, 2014 4:08 pm

Re: Diagnosed with CIS today, more tests to come - things to know/ask?

Post by ElliotB » Thu May 16, 2019 9:41 am

"I now believe at the first onset of MS symptoms one should get a massage."

I agree. And they should likely be done on a regular basis many times a week. As MS is often considered to have blood flow as at least part of the equation in the disease, any activity that helps increase blood flow makes sense, such as regular exercise and of course massage which is also thought to do a good job of increasing blood flow. Massage chairs which were once very, very expensive are very inexpensive/affordable at this point and if you make the commitment to use it daily, it will pay for itself in many ways, both financially and health wise. Or there are so many professional massage companies available. (A good massage chair is about $1000 and 1 hour massage typically cost about $100, so there are numerous cost and convenience benefits in make the investment in a massage chair. Either way, massage makes sense!

Post Reply
  • Similar Topics
    Replies
    Views
    Last post