By mike-d-russell June 9, 2021
You have MS, but you look so healthy!
Yep, I know you have heard this before and I know the thought going through your mind. As an MS warrior, like you, we have heard this several times. Oh, then there is that look parking in a handicap spot we all get of “what the heck it’s handicap parking”
What we hear
So, what do MSer’s say when you hear “but you look so healthy”, well, they might hear, you don’t want to hear about my pain, thank you it’s good to know, I guess I’m lucky, I’m in a fight with a monster, what the eyes don’t see or we just don’t react at all.
I know it can be irritating at times. We need to keep in mind MS, is a hidden illness so they say. It’s hard for us to believe considering all we deal with day in and day out. Even with PPMS, I hear this all the time. I’ll take it in stride, chalk it up to my eating properly, and working out at least five days a week to slow the progression.
Educating those around us
“You look so healthy”? I don’t know how you handle this. however, for me, I consider it an opportunity to share, educate and learn. OK, I know, how can we explain MS in a way that makes sense. Difficult I agree considering it impacts us all differently. It would be easy if we all had the same symptoms as easy as 1, 2, 3.
Unfortunately, everyone’s symptoms are different depending on the type of MS. Making it even more difficult to explain there are 6 types of MS or 5, maybe 4 depending on what you have read or heard. Benign MS, Relapsing-Remitting MS, Secondary Progressive MS, Primary-Progressive MS and I have recently read about Progressive Relapsing MS and Tumefactive MS.
Each form has similar symptoms yet different physical impacts from person to person. Let’s take a look at the types of MS.
Types of MS
Great question! and hard to define. Keep in mind your Neurologist and mine may not agree with the following list.
First, is Benign MS of which from what I know is a form where you have lesions, yet no symptoms as of yet or symptoms years apart? Hard to believe, although a Neurologist did mention this form to me early on. I still wonder about this one.
Second, Relapsing-Remitting MS must be the most difficult to explain. RRMS you feel good one day, one hour, or a week, month, year, or not so good for an hour, a day, or weeks or a year. How can we begin to try to even explain RRMS?
Third, Secondary Progressive MS is a combination of RRMS and PPMS. With this type of MS, you’ll have symptoms that continue to get worse and some that come and go. This form is typically the next progression from RRMS and before PPMS.
Fourth, Primary-Progressive MS of which I have and the easiest I feel to explain. With PPMS your symptoms are with you every day and just continue to get worse with one exception to the rule. If you have Uthoff’s this symptom will come and go when your body heats up. Uthoff’s is specific to your vision. As your body heats up your vision becomes blurry. By the way, in the 1880s Dr. Uthoff would place his patients in a hot tube of water. If their vision became blurry or they lost vision he diagnosed them with MS and Uthoff’s syndrome.
Fifth, Progressive Relapsing MS, of which I recently heard this term. This form is described as one of the least common forms of the disease. The condition is characterized by a progressive worsening of the condition from the beginning, yet some symptoms are relapsing, similar to primary-progressive and relapsing multiple sclerosis.
Sixth, Tumefactive MS is a rare type that causes a tumor-like growth in the brain. Symptoms are similar to what happens with brain tumors. Over time, it usually turns into relapsing-remitting MS.
I am sure you now have a great idea of how to explain what MS is or maybe not yet
MS, the hidden disease
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