Let's talk Diagnosis! BENIGN MS.. every 15 years

 
I've been laughing for many years about this diagnosis because there is nothing "benign" about my disease. MS is a nasty, MEAN spirited disease full of surprises without warning. I've been living very angry about dealing with this issue and all the stigma's it's delivered in my life PLUS the doctors who naysay the original diagnosis, the neuros who claim I don't have it now because it doesn't fit their "insurance" box. All they want to do is put me through all the millions of tests I spent 18 months with my original genius neurologist figuring it out to begin with. Along with MS, I am duel diagnosed with Fibromyalgia which amps up that inflammation issue all over my body. And you can read all my symptoms and dx to see what I deal with.

In the last 13 years, I have finally discovered the cardiac issue. After 4 heart catheterizations, 3 cardiologists and 8 years of my personal service dog sending me to the hospital 3 different times from home and ending up hospitalized 4 other times, my 3rd cardio found my issue: a heart DEFECT I was born with! A Myocardial Bridge. Had anyone done my heart cath's correctly in their entirety and tickled my heart like they were supposed to, they'd have run into the heart muscle and discovered that my right pulmonary aortic artery wove UNDER the heart muscle and back out ... a common heart DEFECT - most likely courtesy of being the first born to my alcoholic mother who didn't know she was pregnant in the first trimester! So that's been an incredible relief to know what's going on and why I have frequent (and I do mean FREQUENT like multiple times daily) near heart failures that I have to intercept with physically slowing down, purse lip breathing, and letting my heart relax enough to reopen the blood flow to my right lung and beyond. My girl Athena had been alerting me to this issue for over 8 yrs before my new cardio finally decided to do his own heart cath but it took a massive insurance fight to get the permission because I have great arteries and no sclerosis in them. And he found it because he did his job thoroughly!  Since then a loop monitor has been put in and I'm on 24/7/365 monitoring so it's all good. 

However this article caught my eye as another article I'd read talked about the progression of MS in 15 year increments. And I can attest to that. Here's the link to this article to back up my own findings about whether "Is MS real or a myth?" .https://multiplesclerosisnewstoday.com/2017/03/23/is-benign-ms-real-or-is-it-a-myth/ . For myself, I can date back to my original symptoms with the birth of my son in 1977, then exacerbation after a car accident in 1992 but doctors had dismissed all my symptoms to being a new mom, to being hypochondriac about my health, etc and a type A tense personality. So nothing was paid attention to until my right hand paralyzed and my fine motor skills quit on me while in my doctors office. A multitude of questions later and she referred me to a neurologist who couldn't understand why my previous complaints had not sent me to him sooner. That was 2007, the 3rd stage of 15 years progression. By this time my symptoms were all over the board and crazy and I'd built in tons of coping mechanisms. I'm JC virus positive and my flesh necrotizes to copaxone shots so my options were very limited. The best two and a half years of my life were on a trial of cerafimod/ONO-4641. I dropped several prescription meds, and had the most wonderful pain free, spasticity free times. And then Tecafidera got approved first and cerafimod was dropped and shut down. I can't do Tecfidera because of the JC virus. (sigh). 

And life goes on to the next 15 years through which I lost insurance and neurologists and had to cope without help except from my primary and we just dealt and still do. I'm down to a minimum of prescriptions. and I've discovered supplements that work for me. But then 2022 hit and symptoms started intensifying in pain, foot drop, balance, falls, and the heart issue which brought us to the cath that discovered the Myocardial Bridge and I realized I'd hit another 15 year stage.

 I'm 68 years old. I've manage to get this far with minimal use of a cane or walking stick (for balance and my heart issues), and the wheelchair is a must in airports now. Walking is 100ft limit without support like a shopping cart of someone's hand or my walking stick. My legs are fine, it's the rest of my body fatigue and muscles turning to jelly. Stamina sucks and I get an afternoon nap when I can but that blows my sleep patterns at night. MS is not benign. They just don't understand it still. I've had it since I was 22. I can document it's journey way too well. Neurologists and Insurance Companies need to come to the peace table and stop their nitpicking and just cover the mysteries of this disease. There's more people like me than there are classic textbook symptoms.  

In the meantime I'll keep researching my holistic natural methods and keep coping. 

Time flies by...

It's been a while since being around here... after getting over my frustrations with doctors, I realized I needed to set up with a new neuro and a new PCP. These are two very daunting tasks for me as it's a challenge to find doctor's I can trust to listen to me as I explain my body to them. I have lucked out and am happy with my new neuro and my new PCP... both are very thorough and follow through well. They're also very forthright with the information with me and I find that refreshing.



Lovelace Scientific Resources



With that said, the neuro suggested me for an Oral Drug study which provided tons of new tests, MRI's, labwork etc... and again, for the third time O-Bands were confirmed on these tests as well as his labs and my PCP's.  But I'm in the midst of a couple of MS flares that are increasingly annoying: the frozen vocal chord (causing the silent aspiration), severe MS fatigue (despite 150 mg of Nuvigil) and a lot of confusion and forgetfulness moreso lately than ever before.  I had been experiencing my usual spasticity but that seems to have subsided after two weeks on this new oral drug study with ONO-4641.

The fatigue has been devastating though. I fall asleep at my laptop, oversleep appointments, miss church, don't have energy to be inspired to shower up, and tire out trying to push the shopping cart! How to feel even older at 55 than old already feels!  I feel like one of Mudd's women from the old Star Trek episode, gotta pop the pill to get my spunk and get up and go.

Overall though it's nice to have an oral med that appears to be helping without much side affects.  Tomorrow we do a check up and see how it goes. Hopefully the results will continue to be positive.

Here's a copy of a post I like very much describing Chronic MS Fatigue... it says it so much better than I could... What I want folks to understand is that everyone can feel this way, but everyone who does, doesn't because they have MS and because of that they cannot know the depth of the fatigue we experience!  

This blog is outstanding about MS and sharing a great deal about the disease's damages!

http://suddenlyms.blogspot.com/

What Makes MS Chronic Fatigue Different?

Several different kinds of fatigue occur in people with MS. For example, people who have bladder dysfunction (producing night-time awakenings) or those with nocturnal spasms, may be sleep deprived and suffer from fatigue as a result. People who are depressed may also suffer fatigue. Those who need to expend considerable effort just to accomplish daily tasks (e.g., dressing, brushing teeth, bathing, preparing meals) may suffer from considerable fatigue as a result. Chronic fatigue is one of my worst symptoms living with MS. And when I say fatigue I am not referring to a sleepy and tired feeling. More like you get plenty of hard sleep even 10 or 12 hours and wake up feeling like you had been running a marathon all night! It goes much deeper than your normal fatigue it is a complete feeling of duress. It is being forcibly confined to even making simple movements without it requiring an extreme amount of effort taken from the reserves you no longer have. Although this is not always outwardly apparent whether hidden, disguised or masked it is simply unbearable at times, this complete, whole body burnout. It is at times as bad as having a migraine coursing through your bloodstream. An unexplained and relentless pain follows interwoven with it as though it were on some path to defeating you.

There is another kind of fatigue that affects us with MS. Researchers are beginning to outline the characteristics of this so-called 'MS fatigue' that make it completely different from fatigue experienced by persons without MS.

* Generally occurs on a daily basis


* May occur early in the morning, even after a restful night's sleep


* Tends to worsen as the day progresses


* Tends to be aggravated by heat and humidity/extreme cold


* Comes on more easily and suddenly


* Is much more severe than normal fatigue


* Is more likely to interfere with daily responsibilities

MS-related fatigue does not appear to be directly correlated with either depression or the degree of physical impairment. Considering the above triggers how does one function and accomplish anything daily when they are prone to this beast simply by waking up? Force seems to be my only answer so far.
 
And that's how I get through most of my days... by force. Then I crash. Oh for the days when rest came easy and sleep meant waking refreshed!

Mikeschair - Let The Waters Rise

Flares: New Meaning for the Word

Flares are those wonderful mini-health events that occur for short periods of time that just disrupt your body. Sometimes they last an hour or two, or a day or a week, or even a month! It just depends on how long the system that is affected can't recover. Sometimes they're burning and fiery just like the word sounds, sometimes they just knock you off your feet like an earthquake, other times they're really sneaky and you hardly know they're happening til suddenly you realize this is regularly occuring... and then wham, dang, you know what's up!

I was in the midst of the most horrid and frightening of flares (IMO) for quite a while some time ago: an autonomic dysfunctional flare. Big words for the little things that we take for granted like: * Breathing* swallowing * frozen vocal chord* irregular heart rythyms*- all those things we don't thing about that just happen naturally when your body is working normally.

All that sounds like no big deal til one day you realize your drooling like a baby while youconcentrate on a project at work and it's all because your body isn't swallowing normally... or you've quit breathing (LITERALLY) and you're gasping for air and someone says, "what's the matter ?" and your chest hurts because your heart hurts because it's in shock because for a moment no oxygen was en route ... BUT all your organs are just fine!

And your doctors are sure it's something else, so they test. They listen patiently, they wonder aloud (sometimes) and then they order up a new test or a new prescription. Test after test after test is all "normal". It's 'just' MS. OR worst yet, another symptom arises and it's a prescription conflict that will be discovered later. Such a merry-go-round of issues! That's right, it's "benign" MS.. relatively harmless, just annoying and sensory pain. So be it.

So I know my enemy now. This unwelcome intruder. Why keep up all the expenses? Testing and multiple doctors takes on a life of it's own. if I followed every thing every doctor said, my entire income would be to them. As it is, I'm practically broke already from all the faux pas we've done trying to disprove what we already knew two years before! So, finally, I just got fed up and decided to live through it. What's that old saying? Oh yeah...guess I'm in strength building mode now.

Insurance Companies = Annoyance!

I guess the insurance company knows best! At least that's what I'm supposed to believe... they've cancelled my ability to get Provigil on my insurance plan which costs me $60 versus the $500/month or more it would cost outright! The cost of drugs in the US is crazy! So now I'll have to seek it outside and buy that way which will still crunch my prescription budget! How incredibly annoying that after all this time when I'm finally stabilizing into a period of hardly any symptoms going on (outside the usual  numb right foot, face and knee, sometimes the frozen right vocal chord, a swallowing issue once in a while, some minor spasticity, and a few aches and pains) so that I'm doing great!

Time will just mosey away on me
as my energy is sapped!

But NO, now they have to upset my apple cart with their NO MORE PROVIGIL! OMG, I feel like an addict who's suddenly gone cold turkey except that I'm not addcited. I've already been out of it for over a week and becos we've been tight, I've been stretching what I have... but now I can't get it all! Thank you United Health Care. You're normally great about pretty much everything, but this time you've let me down! What a bummer... I'll be dragging like a Salvador Dali painting! Praying energy... just enough to sustain me... Please Lord.

sheer frustration and self diagnosis

Remember the old Carly Simon song, Anticipation? Well, just replace that with Frustration.... any which way you like and I have sheer frustration with the medical community! I am not a doctor but between my own health and having given my mother her end of life care for emphysema for a year, they've all taught me well! In their ineptness, lack of personal care or over concern for fear of lawsuits, they've overtested, forgotten to listen and missed diagnoses. Every doctor I encounter always asks, are you a nurse? No, but I ought to be by now... dang! Instead, I have MS and I'm dependent upon the very people I see not care much about the people their sworn to care about! It's sad, it really is.

I have a battery of doctors I owe my life as I know it now to. I have a wonderful internist PCP who's willing to admit her mistakes when makes them, seek more knowledge when I come up with diseases she doesn't know like this MonSter and mixes her Easter medical knowledge with her western training for me which I love her for! Best of all, she really really listens to me when I talk to her and she trusts me and my judgment about my body! You gotta love your doc for that! She gets my doctor of my life award for that!

I have a cardiologist at a hospital who I'll never see again nor finish paying nor care about paying becos he wouldn't listen to me, nearly gagged me to death with the ultimate heartburn cocktail when I explained I had a frozen vocal chord and my MS Hug WAS NOT a heart attack! But keeping MY head about me kept me from ripping HIS off!

I have my own cardiologist who's fired me cos I'll never be able to pay him back, whom I love for his candor, care and friendship that I never should have never had to use because I have a neurologist who is too cautious because he didn't think far enough to consider the OBVIOUS: medication.

I have an Ear, Nose and Throat specialist who didn't understand why ONLY ONE vocal chord was frozen and I sat down and shed a tear or two when he said, "right side" when I asked again, "which side?" My always-the-right-side that is has a multitude of numbness, spasms, paralysis in other areas etc and now the vocal chord - an autonomic function I can't fake (if I were to.)

I have dozens of techs in various testing sites to attest to a variety of symptoms I've experienced i.e. "she stopped breathing while engaged in the EEG" , another autonomic function failure I'd been reporting to my neuro but he didn't seem to think was very serious and only listed in my notes as, "Ms. Willis has a lot of complaints!" As though I'm a hypochondriac!

While experiencing heart attack like symptoms which ultimately turned out to be the MS hug, hospital personnel hardly knew what to do with me at two different ER's. MS Hug? Now say Heart and they're in action but not listening... talk about needing a muscle relaxant to get your chest wall to let you breathe and they look at you like you're speaking greek! How in the world would a patient have any idea what THEY need? What a novel idea! It took 3 months later and a week of two visits with tne neuro (and a phone call to my BSN.RN girlfriend) to figure out an old drug, Skelaxin might (and DID) work! I already had Flexeril and Zanaflex and they didn't touch it... thank goodness for old drugs!

And now the ultimate insult in medicine... Restless Legs Syndrome is agony for me every single night but ever more so when the weather changes and storms approach. I always use to take a natural product with Quinine in it by the Hyland folks. My neuro suggested Mirapex. More consistent he said. So I did, and eventually needed to be up to 1mg per night every night.

Then about a year ago, I began to experience sleep episodes during the day while driving, working, anytime! Very scary episodes! I would suddenly close my eyes though totally aware behind my eyes that my eyes were closed and I'd be literally chanting to myself "open your eyes, Deb, open your eyes!" like Sally Field to Julia Roberts during that diabetic crisis in the beauty salon that day she crashed. And then, the horror registers: on one occasion I was literally going through a busy intersection in town at the time, another time I was crossing the peak of the Skyway Bridge and veering for the outside wall from the hammer lane (I'm always in the fast lane, or used to be til this started), or I'll be driving to Ochochobee to my friend's house only to wake up facing oncoming traffic in time to veer to my own lane and I pulled off to have good cry and shriek about why?

And so it went, month after month, test after test, more meds... we added Adamantium to boost the Provigil and it helped a bit for a while then it all crashed in again. We stopped the Atarax for the itching, so I'm scratching more but still can't stay awake. I missed a Daytona opportunity because I couldn't drive across the state alone! I had heart monitors for a week and nothing out of the ordinary recorded and finally I had the ultimate insult: a portable freaky looking set up, the EEG for 3 days. And NOTHING out of the ordinary was recorded.

So when I walk into my neuro's office and sat down to read about the wonderful drug I take for my Restless Legs Syndrome ONLY to learn it IS MY PROBLEM, I was incensed. I held up the literature with the big bold letters on it and faced my neuro: Falling Asleep During Activities of Daily Living: Patients treated with Mirapex® (pramipexole dihydrochloride) tablets have reported falling asleep while engaged in activities of daily living, including operation of a motor vehicle which sometimes resulted in accidents (see bolded WARNING).

The neuro whom I respect greatly but I think is sick of dealing with my MS and all "my complaints" just looked at me and said I guess we have to take you off that then. And so we did over the next week and he wanted me to call to be put on something else but nope. Forget it, I'm going back to quinine and living with it. Life was safer before another danged prescription!

Geez, somehow it'd be nice to have had this discovered nearly 18months ago and not had my life shot down by all this garbage over a med reaction! Go modern medicine, yep, I'm impressed! NOT. I'm disappointed they don't apply the same simple principles I learned in stock car racing, remember to check the obvious first, THEN look for the mysteries! 

Hot Buttons and Mood Swings - LOOK OUT!

Some days are so unexplainable. It seems like such an excuse to say, 'oh, it's the MS' that causes me to have such a short fuse, but I can be gonig right along just fine when something hits me wrong and WHAM! I'm either flying off the handle over some little "thing" or a crying a bucket of tears! And there's my husband who says he can't win to lose... and yet, sometimes I think he sets me up just to watch the fireworks! Then he says I "scare" him... go figure... he towers over me!

Mood swings. Who'd figure a disease would have "mood swings" in it's repertoire? It's bad enough I'm hyperactive, type A personality who's been cut off at the knees and literally hobbled by this MonSter but then to have to be even MORE subject to "mood swings" is downright crazy! I know there's antidepressants and anti-anxiety and tranquilizers etc available but having seen the addiction aspects of benzodiazapines, I am not fond of any of those. I also have a fierce sense of awareness that I believe will keep me grounded enough to deal through the moods and make me discipline myself so that I don't become unlikeable, or undesireable to be around. That's a deep seated fear ... that folks will tire of the issues related to this disease with me and that I'll be a boor no one will want to be around... so better to focus on disciplining myself through these things than to deal with becoming insufferable.

Insomnia

Me and sleep have developed a love / hate relationship. I would love to sleep but for some reason my body just hates to relax enough to get there and STAY there! When the spasticity gets cranked up like it has been lately, and it's been on a really big time roll, it's relentless... sleep might as well just go away and it does. So I gjve and just keep working away on the laptop getting out one project after another and catching up as I go... as much as "catching up" as I can. And then, eventually, exhaustion sets in, but to get to any real sleep, I need to use a muscle relaxer to keep the muscles loose, and a pain reducer (in my case it's Tylenol #3) and between the two, I can find a solid, super sweet 7 hours of sleep! And when it does, I'll hit the sack and wake up feeling incredibly refreshed but sooo stiff and wobbly! Til my legs find their footing again... and my brain will think, what time is it really, didn't I just lay down?

Oh what an adventure this strange intruder has created for my body... and my brain to adapt to... and in turn for my spirit to accept.

Accept. That's my killer. For that I pray the hardest. I'm the independent, capable, didn't have to ask many for much help person in the past. Now I'm the one who at any given moment can find myself flat on my face because my legs can't hear my brain's message anymore, or feels like a newborn colt on those long spindly legs with no balance yet! And all the while my memories take me back to CLIMBING Stone Mountain Georgia with my Boy Scouts in May of 1989 and 1993 (but not quite understanding why I couldn't do it in 2001 and 2005 but realizing it wouldn't happen). Or, cannoing 50 miles down the Peace River over 3 days with the boys, myself solo with an inexperienced scout... or hiking 12 miles in ill-fitting boots... while today, I'm fortunate to make around my neighborhood block now twice with my son and our dogs.

Accept. With the grace of God, I'll accept.

Sleepiness but not really sleep...

It's like living in a dreamland when I sit down, my brain just checks out. Next thing I know my chin has hit my chest in that totally narcoleptic knocked out sleep style and I'm springing awake and thinking, "oh, good gracious, I hope no one saw" that but of course someone always does... and usually that's my hubby, Doug, who thinks if I'd go to bed earlier I'd get enough sleep to stop this...

If only that were true.

I used to be able to lie in bed and read a book and fall asleep and get thru most of the night. That was before August of 2008 when this MonSter took a giant leap into a whole new series of symptoms I'd not had much to do with before (spasticity, spasms, and intense pains). Now those are my regular companions and sleep is fleeting that usually leaving me waking up with what I call the "vice grip" headaches at the base of my neck. Or my legs are numb and barely moving in the morning and require a lot of extra work to stretch them out to get going.

The worst part is that being a punctual person for work, no one would believe it anymore since it seems when I'm due to go to work, the extreme fatigue, the narcolepsy-like sleep episodes begin, and so much extra time and work has to go into getting myself going that punctuality begins to be a joke. It's like besides my dignity and everything else about me, now MS is robbing me of some of my credibility. And to explain to someone every time just sounds lame.

So I end up either very early or somewhat late. Now I understand the need or reason behind disability for MS... there IS an impairment to our ability to meet the norm for the workplace.

MS Fatigue- debilitating and all consuming

Provigil is the most awesome drug created in my personal opinion. Legal Speed without the effects. :) I was hit with the MS Fatigue sometime in the fall of '08 and couldn't figure out why I was literally snapping shut to sleep without warning any time of day. Finally I mentioned it to my PCP, Dr. Kakarala (whom I adore too) and she gave me a couple weeks worth of Provigil to try. Even though I'm hypothyroid, it didn't feel the same... she was right, WOW!


What a difference! It kept me alert but not revved up... but now 8 months later, it's worn off and the fatigue is back and I fight every day trying desperately not to fall asleep at the most inopportune times.... it's SO HARD recognizing limitations, feeling weak and feelingless able to perform all the responsibilities I feel I need to.

Yesterday was a bad day... the WHOLE day was anytime I was still, I was lost in the fatigue fog... that's where suddenly you're going to sleep. But it's really not sleep, it's just a drift off into a daze and then you jolt awake and wonder how much time has passed. Sometimes it happens sitting at my laptop at home, but that's safe. Driving, working at church, trying to function, it all drives me nuts trying to slap myself awake when it's hitting... and it's so hard to understand by anyone not going through it. The only solution is the bed. But goodness I'd be so useless then if that happened... really useless, or at least more useless than I already feel like am now.

MS feels like .... is always a good reference point to go to especially when I'm feeling pretty sorry for myself. It's a great "list" to start cos as your listing, pretty soon, it's like, why bother, because this disease is what it is it is and you just have to accept it. Acceptance. That's the hard part, but...



Ultimately in the end, MS has drawn me closer to the Lord, and caused me to see the true gifts in my life. MS has clearly laid straight the priorities in my world and has helped refocus my son. For that I can't fault the disease. I'd still have been listening Lord but maybe not as keenly, maybe just sort of figuring He's there, I'm here, life's what it is. Now, it's Ok, Lord, today is a new day, what's in it today that YOU have in mind and then WHAT can I do... and that's pretty literal, WHAT CAN I DO?


What I do now is think about what I CAN do and try to acheive those goals. I don't put things off anymore. There's a new sense of urgency becos from one day to the next I don't know if I'm going to be as mobile or balanced or able as I was, so today really counts for alot. The progression of MS has brought a lot home to realize the importance of the moment of NOW.

This next pic says it all- it the whole gamut... top to bottom, all together. I used to think it was just funny, then I realized... we may not have it all together but ALL OF US with MS, ALL of US have it ALL, every possible symptom exists in an MS patient somewhere... so this is really true!

DMD's and MS Drugs ...

Everyone's heard of the WMD's from the War in Iraq, well, MS has the DMD's : Disease Modifying Drugs. Funny but every time I hear DMD's I think of the WMD's becos the DMD's pretty much seem to do the same thing in my opinion but then that might be just because me and Copaxone didn't make it very well. I was really high on using Copaxone... daily injections for slowing down MS. It was supposed to make me feel better, bring me back to my "normal" before all the flares set in. I was racked with spasticity flares, pain off the charts and finally the neuro ordered the DMD. I cried! I wanted the right stuff but when he gave the order, I cried! Holy Cow, this was the real deal!

Well, I got down 6 months and in that time, ended up in the hospital twice for near heart failures (mimicked from the MS Hug and the BP fluctuation) and had site reactions from hell that itched worst than I can reasonably explain. So after my last hospital run, I quit the Copaxone. Fortunately for me, the Neuro agreed and said that was the biggest issue with it. So, no Copaxone for me... so much for the DMD.

After finally getting away from the Copaxone for the past few weeks, I feel a 100% better... what's left now is the normal stuff... which is the increased weakness, the regular pain (NOT the intensified pain) and all the normal symptoms I'd been periodically experiencing.

So after a long heart to heart with the neuro, we agreed to wait on the pill stuff next year. run ,more MRI's on the 3T Tesla machine in Sarasota, he put me on Neurontin to kill the muscle pain, spasms and spasticity (yep it's powerful!)., and monitor as usual. Monitoring... it's always a waiting game.

And then the big question: am I at my maximum medical status and if so can I just maintain and call you as needed or am I still on the roller coaster? He smiled like he always does when he's about to deliver a blow... "nope, you're on the roller coaster"... and he suggested a cane for balance now becos of the times when I park out in the lot, it's hard to feel stable enough to make it to the store. A cart helps but if one wasn't available a cane would help but... geepers, a CANE? I just never really had that thought yet... a cane. Pastor Mark made a good suggestion for a folding cane... gonna look into that one... in the meantime, walking a little bit more with the dogs yet each night, hoping for more strength.

Sympathy from friends... thanks but...

Many friends express sympathy for me in my work and general activities that it must be hard to type etc... but it's not things like typing that get to me... my fingers are fine... most of the time... when they have their moments, it's a just that: a moment and it passes ... again and again and again... but it's bearable when it happens cos it's a momentary thing, just signaling another episode in another part of the body- like burning nailbeds or fingertips.


But the key,  and I can't emphasize it enough is how wicked the disease is for each individual... the symptoms list is incredibly varied ... and each of these symptoms vary per person in degrees of impact... and each person can have some or all or barely any but one really, really major symptom like a friend of mine who is suddenly blind now because of lesions on her optic nerves. It's just that crazy and horrible. And each time each symptom shows up, it's never the same twice. Some days the nerve pain is excruciating in my feet, other days it's little pin pricks anywhere on my body or it's a muscle seizing up so tight up my back or a "charlie horse" that won't quit up my calves or thighs (spasticity to the nth degree) or forearms that simply spasm repeatedly. Some times in church, I sit with my hands spread eagle because my hands make fists that won't quit aching. Pain. Simply pain. And it's indescribable and unseen.


This blog is therapeutic to share it all. It's a creative outlet to express it without feeling like I'm always whining to others or perhaps not being as "graceful" or "grateful" as I think I should be when I don't feel like it. MS is a really very common disease but very few medical folks know it. Everyone seems to know someone with it but they don't know alot about it.


When I was diagnosed with it, some reactions were, 'Oh, well I know a ________with it and she/he's had a very fine life with no real problems.' Yay, for them, really appreciated that one.


Once again, MS isn't the same for everyone. Mine is primarily SENSORY (meaning lots of pain, mobility issues and spasms/spasticity). Wonderful. No one else's MS is anyone else's MS ever. Essentially, awareness and education seems to be like with any disease, any condition, the key to understanding. I have no illusions about a "cure". Something this vague, this incredibly difficult to diagnose to begin with isn't going to be "cured". But it can be understood better.




Now, some days I feel like this picture and totally understand her!



I remember being happy the day I finally got a diagnosis. My neuro looked at me like I was crazy and point blank said, "I don't know what you're so happy about, I HATE this disease." I said, "I've got an answer finally, after 20+ years, I've got an answer instead of being treated like a hypochondriac all this time!" He just smiled and said, "yeah, we've got an answer."

     Answers but no solutions and tons more questions.

There are Hugs and Then there are MS HUGS!

Hugs are such wonderful things shared between people who care about each other. But when MS "hugs" you, it's spasticity in the wrong place! It's a phenomenon doctors have only recently truly recognized and realized it really does happen. And believe me, when I say drs are just realizing these things. MY neuro is up to date but hospitals, ER's, nurses, and drs in those areas are really lost. I am their educator then. And then they won't listen still.

I've been hospitalized twice just this year already. Both times "heart related," with the first time for the hug. The hug is around the torso, when the muscles that criss-cross your chest, your diaphragm and stomach area, tighten up and then don't release. Imagine exhaling and then not being able to take another breath. That's a hug.

Well when spasticity sets in, your muscles can't fully expand so your lungs can't get a full deep breath and then your heart begins to stress. then all the symptoms of a heart attack set in... then you wonder do I decide this is a hug and risk a heart attack? or go in? It's a mess to figure out but you do it once, figure all the signs out and verify your heart and then next time you know better...

But the hug doesn't let up... so it just hurts alot... til finally the right muscle relaxant is found and it breaks the hug's grip. In my case it was an old regular, Skelaxin. Sweeeeeeeeet relief! What a relief... here's a picture that expressed the hug nicely... from Mother Nature but you get the idea. :)

Expiration dates: Use by....

There are many nicknames for MS... MonSter, MyStery, MaSter, MiStress... all imply dominating negativity, because there isn't anything good about this disease. There really isn't. The disease itself is not and never will be good in any way shape or form.

My brain that used to be so incredibly sharp and able to remember every little detail for endless years, now can't remember past 2 minutes if I'm lucky. No amount of word association or tricks will do it. So I keep a pen and pad handy or use my hand alot and write it down or 50 ft away and I'm searching for that 3rd or 4th thing on that "short" list of stuff I was sure I could remember. But ask me tomorrow or later in the day and I'll have it all together. Long term is fine short term is gone. My neuro tested me and it's a 1-2-3 sequence and it's gone, start over thinking again. now I know how an early beginning Alzheimer's patient feels.

Only I know my enemy and there's no escaping. It's like MS sprinkled battery acid over my brain and it's a hit and miss as to what's corroding and what's not. In the meantime, the army of "pacman" that MS sends out over my nervous system play Russian Roulette with whereever they decide to nest and until a new symptom show up, I don't know where the next strikes coming. It's like WAR inside your own body but heck if you know where it's going to hit!

One of my favorite pictures of all time is above and I added the no nonsense sign. It's the best expression I've ever seen of MS- each location is stamped with a butchers stamp of "use by _______" to be dated.... if only we knew what date we'd be losing our legs or upper arms or our sight or our voice or even our ability to breathe (or our heart) -which are part of the "involuntaries" (the muscles we don't think about using, they happen automatically) that get affected when the nerves send the wrong message out to them.

It's a good thing my trust is in Someone so much bigger than just my body or this disease or the medical community and all the tiny little pills I take every day.

This is an explanation of my MS and a pictorial expression compiled by other MSr's I've met on another site I keep my medical information on for researchers and other patients alike called Patients Like Me. It's an awesome resource for us cos it tracks our symptoms and our meds and our progress.

The SINGLE most important fact about MS for everyone is that it is an INDIVIDUAL disease. EVERYONE's MS is different for them. No two people have it exactly the same. The degrees of MS are so varied, there's no measuring it across the board. For some it's a nothing thing in their lives, for others it's debilitating and crippling and incredibly painful. Every single person is different because MS is a disease of the nerves in the brain and the spinal column only. And those two - the brain and the spinal column control every aspect of our bodies- no muscle moves without a nerve telling it how to and if MS tells that nerve that the muscle is now frozen (even if the muscle is healthy) then the muscle freezes stiff. That's called spasticity(one of my most major symptoms). If MS affects the nerve that tells one or both vocal chords it's frozen, it is (and you are hoarse or mute). If MS tells a nerve in your foot its wet, your foot literally feels wet. I live with 8 cats, 4 boys and 4 girls. the 4 boys have been known to get into pissing matches with each other and I'll be walking through my tiled floor house barefoot, hit a spot that feels wet, only to start hunting for the "pee spot" I am sure is there, and realize it's a miscommunication of my nerves! These are my daily symptoms. Those are just a few... there's a multitude of other symptoms far too many to list but suffice to say MS is evil. It's also very difficult to diagnose but it pays to be persistent, even if it takes 20 yrs to get there.

So I thought I'd share ME with you all and give you a small idea of my picture of health these days which took a drastic turn in July '06 when after spray painting some furniture that morning before school, I could not use my right hand for fine motor control tasks- no writing with a pen or trying to button someting, tie my shoes etc. Fortunately I had a regular Doctors appt that afternoon and while trying to make a note, she noticed immeidately the lack of control in my hand and after a few questions (all yes, yes, yes,) she referred me to my neurologist, Dr. Alvin McElveen (nationally known).

Two months later (he's very high in demand) we met, and after a full exam, his initial impression was that I had MS. However, mine is an odd case and after an MRI and the vision tests, they all came back normal, he determined I was negative for MS and we embarked on the next 18months of trying to figure out what it was, until after 18months, clinically, all the symptoms still pointed to MS and the lesions simply don't show up on a standard MRI (3T magnet). My next MRI's will be with a 3T magnet MRI in another city. The clincher was when my right eye developed locked into a permanent conditoin of optic neuritis and diminished color perception and depth judgement.

So now it's official, I have MS. And now the next post will include a little posting but mostly pictures. Thanks for sharing this journey with me.