You have MS, but you look so healthy!
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
I know what you’re wondering. Hidden disease, in whose mind is this hidden. Well, certainly not in our mind or spine that is for sure. Let us take a look at symptoms from fellow MSers point of view to include, but not limited to, nor endorsed by, or medically identified! Sorry, when it comes to our life nothing is normal or the same for any of us so a disclaimer is required.
Here is a list of MS symptoms that you may or may not have experienced. Pain, tremors, muscle cramps, spasticity, body weakness, fatigue, balance/gait issues, emotional changes, urinary issues, dizziness/vertigo, heat cold sensitivity, visual problems, MS Hug, neuropathy, speech, sexual, depression, constipation, swallowing, sleeping, involuntary eye movement, leg movement difficulty, itching, seizures, breathing issues. These are just what I have heard and sure it’s a shortlist and might not be agreed to by your Nero.
So how do we explain MS?
I am sure trying to define MS and how it impacts us is not easy. However, I find the challenge interesting and educational. We could explain the six types of MS, symptoms, how it impacts us differently which would take an hour or more.
The best way I have found to define MS and how it impacts us is simple and easy to understand. Nope, it doesn’t include the impact on our immune system, our B cells, or T cells, our white matter, lesions in our brain, our lesions on our spine, or anything else.
Simple, yet to the point. MS impacts us as an electrical cord impacts anything needing electricity. If the covering of the cord exposes the wiring it can cause an interruption of the electrical current. The interruption will cause your TV, radio, light, or refrigerator to stop working.
Exactly what happens when you have MS. Your immune system damages your Mylene nerve covering causing an interruption of your brain providing signals to your specific body part. This, like electricity, shuts down the use of that part of your body.
Simple yet to the point!.
Again, a long story made short, or maybe not so short. Thank you for reading my thoughts. Please feel free to send me a message if you have a topic you would like to hear about. Until the next time be safe, enjoy family, and thank you for your time.
Do you live with any comorbidities aside from MS?