MS: IT DOESN’T HAVE TO WIN
Ever have one of those other-worldly days? Tunnel vision? Unprompted paralysis? The dropsies? Uncontrollable muscle spasticity? Nonsensical emotional outbursts of laughter or sobbing (Pseudobulbar Affect (PBA)? Unreachable itching?
Just when you suspect that aliens have possessed your body, you realize you could be right and they are crawling on your skin.
Hundreds of thousands of tiny, persistent, stinging insect clones tap dance and twirl on your skin; A confused orchestral arrangement of untrained entertainers.
I look at my cat’s scratchpad with interest. If only the kitty would use me instead.
A type of itching known as dysesthetic itching is sometimes seen in people with MS. This symptom is caused by damage to the nerves in the skin or the nerves that send signals to the skin. This damage makes the skin react with an itching sensation, even if there’s no physical cause for it. People who have dysesthetic itching should talk to their health care provider as there are now medications approved to treat this problem.
Regular itching treatments, such as cortisone creams or sprays, will usually not affect MS itching.
However, some medications may help.
The National MS Society list several drugs that may help reduce MS itching:
- some antidepressants, such as monoamine oxidase inhibitors (MAOIs) and amitriptyline (Elavil)
- anticonvulsants, such as phenytoin (Dilantin), carbamazepine (Tegretol), and gabapentin (Neurotonin)
- hydroxyzine (Atarax), which is an antihistamine
Tremors, itching, hearing loss, MS hug, eye pain, trouble swallowing, speech problems, seizures, breathing problems, and headaches are all invisible/silent issues associated with the MonSter. No wonder this beast is so miserable. I know I would be.
Oh, I am…
For such a boisterous disease, multiple sclerosis is a sneaky son of a gun. Like the tricky life partner it is, the MonSter is a pro at giving its victims THE SILENT TREATMENT.
Acute Neuropathic Pain is sometimes an initial symptom of MS or may be part of an MS relapse. Acute means it has a rapid onset and is of short duration. Types of acute neuropathic pain include:
- Trigeminal neuralgia (TN) — a stabbing pain in the face or jaw area that can occur as an initial symptom of MS or as a relapse. While it can be confused with dental pain, this pain is neuropathic in origin (caused by damage to the trigeminal nerve). This pain often comes and goes and it is unpredictable when it might occur.
- Lhermitte’s sign — a brief, stabbing, electric-shock-like sensation that runs from the back of the head down the spine and often into the arms or legs, brought on by bending the neck forward. It typically means there is or has been damage from MS in the cervical spine (neck). When this happens for the first time it could be a relapse or the first sign of MS. (This one drives me CRAZY!)
- MS Hug — a squeezing sensation around the torso that feels like a blood pressure cuff when it tightens. This too is from damage to the spine from MS and could be the first symptom of MS or a relapse. (For a long time, I didn’t know this boa constrictor sensation was related to the MonSter.)
- Paroxysmal spasms — intermittent and painful tightening of muscles, such as in your arm or leg that may occur many times throughout the day or night.
Pain is a very personal experience, one that you can feel but others cannot see. It is common in MS and can limit your…
Recently, a friend pulled me aside after reading my blog. She felt the need to apologize for not fully understanding the impact the MonSter has on my every life. I hope I adequately assured her that the purpose of this publication is NOT a plea for special treatment, but an avenue of education for the unaware.
The silent symptoms of multiple sclerosis aren’t easy to explain and my heart goes out to those Warriors finding difficulty communicating this.
Society cannot accept the silent and often invisible aspect of multiple sclerosis. The common thought is “if it can’t be seen, it doesn’t exist.” What a sad statement about society. While attempting to blend in with the scenery, society forces us to wear our scarlet letters.
I cannot express my gratitude enough for the authentic friends in my life, who know the importance of conversation rather than assumption. Yes, my friend (you know who you are), we are family! Sister Sledge knew what she was talking about. https://youtu.be/uyGY2NfYpeE
So, Harry Houdini might have been able to escape many a precarious situation, but I believe MS would have proven the ultimate illusion.
But guess what, Harry? I got this.
THINGS I MISS
I want to walk.
I want to walk and I want all of my MS Warriors to be allowed the same privilege.
I was diagnosed with multiple sclerosis on July 1, 2001, answering many questions that were festering in my brain. For some time I did not know why when finishing or even in the middle of a daily walk my feet, especially the right ones, lagged and sometimes even stop cooperating. I often sat down in the middle of the sidewalk or off to the side in a random stranger’s yard. If I had my dog with me, we were probably misconstrued as homeless and ridiculed by any window peepers.
It became so bad that I began making excuses to my walking partners about meeting up with them on our appointed engagements. If I felt especially vulnerable, I didn’t want sympathy/advice/ concern/opinions/questions. Crazy, I know, but fear is a catalyst for many things. I am a solitary person and do not manage well under scrutiny.
Since 2018, I have employed the aid of an AFO for my drop foot. With my trusty cane, I manage well enough, but not to a preferential extent. Yes, I get around; BUT I can no longer walk a dog, climb the stairs to my season ticket seating at football games, freely walk on gravel or grass, keep up with fellow shoppers, swim, take part in lawn games, dance, skip, bike, or often make it to the bathroom in time.
I’m tired of staying home when I could be with friends and family.
I take upwards of 10 minutes to don my AFO, socks, and shoes, so in case of a house fire, I’m toast.
I dream of freedom from this limited mobility. Shortly after foot drop was identified as the primary source of this walking handicap, I investigated Walk Aid, only to discover that insurance will NOT help at all.
Several years later, my then PT and I embarked on a campaign to alter the attitude of the insurance company. We spent hours, days, and weeks compiling medical and personal documentation to support the benefits of a Bioness electrical stimulation device that replaces an AFO in treating foot drops. It was a beautiful thesis that took only seconds to be shot down because of bearing no substantial evidence of success. I have experimented (within the confines of an orthotic office) with this device multiple times and it excited me each time as a ticket to mobility freedom.
So, what’s my beef?
Since my diagnosis, I have learned the blatant truth of the cost of living with multiple sclerosis. It is an expensive disease to have. I didn’t ask for it. The MonSter chose me and because I refuse to bow to its greedy hold, I will fight to the end in helping fellow warriors live a fulfilling life, regardless of the price.
When I retired from teaching, I began a fresh campaign under my retiree insurance. Yes, Humana states that medical supplies and equipment are covered. Only supplies that gain their approval are accepted. AND evidently, the Bioness L300 Go has not earned a proven status due to its young age on the market. (Isn’t twenty years enough time to establish evaluative status?)
No, I do not have the funds to hand over the cost of this device (on top of meds, physical therapy, yearly MRIs, and frequent doctor visits), but life is too short and time is passing far too quickly. I cannot take my accumulated teacher retirement fortune (That’s a joke, kids. Teachers do NOT make much money.) with me; so, if I can make a tiny bit of difference for those who follow in my unsteady footsteps. I hope this is it.
The National Multiple Sclerosis (NMSS) funds up to $1000.00 depending upon financial status, as long as I have a doctor’s prescription and have tried the device. I checked both those boxes. I also requested a recommendation from two physical therapists, my neuro, and an orthopedic specialist. Overkill? I don’t care. I told you I was on a mission.
The MonSter is a thief and has stolen from me, but I refuse to allow defeat. Warriors must remain persistent. DO NOT take no for an answer. Insist on possibilities and don’t back down.
Lisa, Lady With the Cane