My History with the MonSter

by Jane D.
(Indiana)



My journey with MS has been long, and taken all together, it has been hard. Thirty-six years with the MonSter has taught me that while no one wants to have MS, it is a disease which is usually manageable. We need to somehow "partner" with the MonSter and tame him by our attitude.

I was given a "probable" MS diagnosis in 1973 when I had a bout with optic neuritis. Prior to that, I had had "unexplained" double vision, numbness, and vertigo--all at distinct times. This met the criteria even back then of three separate incidents involving separate body systems.

The diagnosis was confirmed by an MRI in 1988 by a neuro who was trying to prove to me I did NOT have MS--I knew I did, and I took some satisfaction in seeing his face when he read the MRI report. I had spent many years having been given the impression "It's all in your head" by other doctors too.

My course of MS was generally slight and generally sensory for many years. I was given the type "Benign" even though I had a lot of pain as well as typical MS symptoms such as numbness and weakness, and it never seemed benign to me. I initially had relapsing/remitting which changed to having symptoms every day after about the first 10 years.

Because I was doing Ok when the first disease modifying medicines came out, and because the majority of damage would likely already have been done, as well as the unpleasant side effects that were known, together with my neuro I decided to not be placed on one.

Over the years I saw that my benign status was changing, but my neuro did not. She didn't see my increasing leg weakness and difficulty walking because I was OK when I saw her. Put simply, she also didn't see what I put up with over the years. Maybe I didn't complain enough--ever. I even had loss of bowel control for many years, and she called me benign because -- "I didn't have enough going on", she thought.

Well, this year it has come. I have fought bronchitis for almost four months this winter, and the infection has played havoc with my MS. I now often have difficulty walking in my home--I use a cane full time--and I fall often. I broke my shoulder when I tried to break a fall by sticking out my arm.

Life is definitely different, but I still maintain hopes that when the infection in me is gone maybe I'll someday get my strength and stamina back. It would be foolhardy to not stay positive and hope for the best in the future.

All in all, MS has been decent to me. I quit work outside the home when I began to have children. I devoted myself to my home and family and cultivated quieter pursuits in life. I seemed to realize right away that I couldn't have it both ways, and I chose to protect myself against stress and fatigue rather than trying to fulfill myself in the work world as well. Sure, there are some regrets, but it was a matter of priorities.

For the past 18 years I have tutored grade school children, first at an Enrichment Center, then in my home. I enjoyed facilitating multiple MS chats on AOL for ten years. In 1999 I joined a group (froup) of ladies on AOL in assisting Judith Lynn Nichols write "Living With Multiple Sclerosis". The book evolved initially from a message board, and then round-robin emails, and is informative as well as entertaining. The ISBN is 0-89793-218-8.

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My Story -- Continuing Saga Part 2

by Jane D.
(Indiana)

Blast Off!

Blast Off!

When MS strikes, it can go for the jugular! In years past we have buried both parents and my father-in-law. Our daughter was married in December, 2007, and my husband and I were fortunate enough to go to Italy for two weeks last summer. There have been amiable and only quasi-amiable family get-togethers in recent years. Christmas was relatively low-key this year, but this was the year my MS STRUCK! So while stress is a big MS agitator, there are other factors, too.

I suppose some would say I was waiting for the other shoe to drop for 36 years. Early on I read several posts saying that people with Benign MS were very fortunate, but in the great majority of instances, MS didn't stay Benign (which is sort of an orphan category now anyway). I'd heard statistics saying from 50-80 percent of people did NOT remain in the Benign category, but of course, I though I might be a lucky one....

As you may have seen me indicate elsewhere, I am relatively certain that the infection I had from the bronchitis and MRSA is what "turned the tide". I've never dealt with this much and for an extended period of time, so it has to be the factor that caused me to go from a relatively Benign MS to secondary progressive overnight.

I began to have major falls, damnable weakness, virtually no balance to speak of, and hip, thigh and lower back spasms that made me unable sometimes to stand for a couple minutes, much less walk even a few steps unassisted! It was now time for A Reckoning! Oh, MS, you willy-nilly destroyer of lives, you tease, you Pretender of peace, you almost had me fooled.



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Continuing Saga - Part 3

by Jane D.
(southern Indiana)

Fall   ing...

Fall ing...


I really got concerned when I not only felt weak, but I saw I was having some difficulty sitting up in bed. (just once) That had NEVER happened! My thoughts immediately went to a motorized wheelchair because I felt so strongly the need was there. Just maybe something inside me felt that after all the MS had handed me over the years, and the fact I had cost my insurance nothing in drugs over the years, modest pharmacy bills, and seldom even many diagnostic tests, I was *entitled* to special help that would make things easier for me again. A chair had been looking quite good to me for some years. There was no question my arms were too weak for a manual chair when I couldn't even push a shopping cart anymore since it hurt my arms so badly. My arms hurt badly much of the time, and have for years.

I started the process of requesting a power chair, and I didn't make apologies to anyone.

There's that thought, "entitlement," even in a disability post. Well, actually not disability--I was turned down for SSDI when I applied once and appealed once about five years ago. I didn't want to quit my part time work; it was my understanding you could work and collect SSDI. I don't think SSDI understood. But now I felt entitled. I was falling all over Kingdom Come, racking up huge bruises, I even ultimately broke my shoulder when I told my MS mind to step, and instead, it curled my toes, made me fall as I stood up, and only part of my body went forward.

I instinctively broke my fall with my stiff-armed left arm, and made about a 3-4 inch break down my shoulder as well as breaking off (but not displacing) of the deltoid tuberosity. (How impressive sounding.) For some very odd reason, (I expect having to do with some kind of nerve shutdown), my shoulder didn't begin to hurt for 3 more days.

I've used a cane on longer jaunts for years, so I quickly found it. I immediately found I couldn't cheat my body, even though it was in the house, and not out on uneven ground. I didn't know what was wrong at that point, but I just knew I got to a place --be it any distance from a wall--and I simply could NOT take another step--by hook or crook or cane or hanging on for dear life! I couldn't carry my load-(ME)-or even one glass. All of a sudden I became downright worthless (for a few moments, in my eyes). Walking is a huge commodity! The MonSter was rearing its head!

Over the course of a couple weeks I bought a couple more canes which I strategically put around the house. There just HAD to be one available when I needed it. And even a cane was not enough sometimes. The alternative was to take one or two steps then sink lower and lower and lower as I got weaker and weaker and weaker. It was upsetting for us all.

Once my son looked at me and said, "Mom! What are you doing down there?" My husband jumped right in and just plain waited on me for a couple weeks, and I lay in bed as needed.

Of course it complicated things to have a broken shoulder and my arm in a sling. We live in a two story house--I went upstairs once daily and tried very hard not to pull myself up the stairs at night, but rather sort of scoot up--propelling myself as I leaned against the wall-more like a careful and slow push/slide. Fortunately, we have a downstairs bed as well.

I don't really understand it, but I guess my balance was extra bad then. I had a tremendous number of falls, both large and small. I fell flat and hard once across the kitchen floor. Thank heavens my husband comes home for lunch! I just calmly sat on the floor admiring my new linoleum a few minutes, and he was there.

When I fall, I usually push up with my arms to get up, but that wasn't possible because I had just one arm to use, and my legs were really too weak to factor in and get me to a knee position.

Bill and I tried for an hour, getting very creative and bringing all kinds of aids into the kitchen; we even had our burly son come over. Then finally Bill called 911. He told them the situation, but they sent an older man and a pregnant woman! They have been trained however, and, standing behind me putting his hands under my nightgown clad arms, he was able to get me up with one magnificent heave-ho! What a technique--I kissed his bald head!

Another thing I did during this period was get out the provigil sample my GP has given me when we went abroad the summer before this, which I had not used. It's for fatigue, but energy, fatigue and stamina are all similar, at least for me. I was tremendously fortunate and it did accomplish something for me which I needed. I'd call it more "stamina" than anything else; it made it so I could function awhile and I was thrilled. I have always been pretty sensitive to medications, but often they do differently than they are supposed to in me. For example, many kinds of pain medicines have been known to cause MORE pain in me. BUMMER!

I like to think I'm so sensitive to them since I try not to have what is unnecessary. Despite the ongoing bronchitis (I'm up to a whopping 60mgs daily now-March 24), I still don't feel poorly and have "held my own" despite the MonSter's "initial" onslaught. As a longtime friend with MS just told me, "I'd been Ok with MS so long I never really expected to get this bad". She noted it was another form of our old companion DENIAL. Denial is always comforting, and protective, maybe; but as we are seeing, when we finally change to Secondary Progressive, it hurts! Life gets real, and the MS can become down and dirty.

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Continuing Saga-Part 4

by Jane D.
(southern Indiana)

CURE MS !  ! !

CURE MS ! ! !

When it's Time for a Wheelchair

The burden of proof that I need an electric wheelchair is on me since I am the only one who sees what it's like to try and navigate these days, and the only one who knows my story of over 36 years. It is a unique case, like each is, of MS over the years, and after more than 36 years, why would someone NOT think that this progressively degenerative disease had finally caught up with me. Mine has been a very slow progression over 36 years, but it seems to have done exactly what MS is known for: progressive debilitation!

I'm hopeful that recent long term infection in my body is a factor and I will ultimately get better, but I am known for my upbeat attitude and positive approach. I have no real assurance things will improve at all...especially when I am completely off the oral steroids I am now tapering down from. I saw in Dr. H's face that he thought I might have reached my time for real disability, and didn't think the current infection was much of a factor at all; he didn't say anything, he just looked dubious.

My weakness is now often profound, and I feel just how dangerous it is as I stumble around the house. Anyone who understands MS knows that symptoms are usually variable, so it goes without saying that I am able to walk short distances sometimes and not others. My lower back seems to be in spasms after just a couple minutes standing, and when I take just a few steps, I often begin to hurt so bad I just sink lower and lower and lower and HAVE to sit down. For some reason if I am bent way way down I can still not fall for a minute. It's not good at all as I use my weak arms to hold on to counters and furniture.

I have set spots in my home where I target to land in each room. In addition to my shoulder injury, I have had numerous other falls recently in the house. Maybe it's been a balance problem coupled with the weakness, because the steroids I've taken recently have helped reduce the number of my falls! {That changed the other night at church when I fell flat in the aisle at a concert-no apparent cause.}

I'm still trying to figure out how it happened, but on January 8,2009 I fell full body flat on my kitchen floor. Fortunately, I didn't have on my arm sling at the time and was able to land totally flat, which I am sure saved me from more injury. However, I usually push up on something to get to a standing position, and I could not because of my shoulder and my extremely weak legs. I waited awhile on the floor until my husband came home for lunch to check on me, but we tried for an hour and he couldn't get me up either.

We finally called 911 and they sent an older man and a pregnant young woman-- even though my husband had explained the situation and my size. However the EMT knew the right technique, stood behind me and heaved me up on the first try. On later falls my husband was successful this way too; I also remember pulling up on a desk or another piece of furniture as my arm got a bit better. They billed us $150 which I have turned in to Anthem; a second bill arrived today as well as the explanation we have to pay since it wasn't a life-threatening situation.

I conclude that the steroids I've taken have helped me avoid more falls in recent weeks. I know they have helped my pain and strength, to some extent. But I have seen how it becomes negligible when I stop taking them, and I know I have reached my limit for some time, (I was wrong here). Already things are going back to the way they were.

My cane shakes as I use it, especially outside, and because both my legs and arms are hurting, and have little muscle strength, I see an electric wheelchair as the only solution. I feel I am one misstep away from another major fall and break. I suffered a shoulder break in December, 2008 which has just been pronounced as healed.

My relationship with my MS has been pretty private and a bit unusual. I was given a "probable MS" diagnosis in 1973. Even then it was relatively easy to see since I had had more than three separate incidents in different body systems. When I had optic neuritis (retrobulbar neuritis, actually) in 1973, Dr. Thomas R treated me with oral steroids and it was resolved. The optic neuritis plus the fact I had had bouts of double vision, numbness, and vertigo prior to that gave me the best diagnosis they had at that time. I also had Lhermitte's syndrome at that time when I bent my head down I recall.

I "put up" with my symptoms because at that time there was no alternative. My MS was primarily sensory and mild, and relapsing/remitting then. I was given my first MRI in 1988 which I have (in hand) as a baseline. The report accompanying it speaks of "high intensity T2 lesions noted in the centra semiovale compatible with MS." (see enclosed).

When the ABC medications became available, I had already had MS almost 20 years. I had learned how to cope fairly well and had the philosophy that I would save any medications (that meant steroids and ACTH then) in case anything "big" came to make it more effective.

Together with my current neuro (Dr. C B.), I made the decision not to be on an injectable. Most damage from MS would have occurred by then anyway. I was saved inconvenience, and my insurance company was saved great expense. I persevered.

My relationship with my neurologist was never good, but Evansville didn't have many at that time, and I chose to stay with her anyway. She gave me evoked potentials, had a tilt table test given, brain wave tests done, an Elisa Screen, and an EMG. I had had a really bad LP (lumbar puncture) early on which she kindly did not repeat as well as the test where they screw things into your arm to test conduction of impulses. Dr. B. did a thorough re-evaluation and reconfirmed the MS diagnosis. I think I've always had exaggerated reflexes, a positive Babinski's, and never passed the one for balance or heat. A nurse once told me all my evoked potentials were abnormal, but "didn't I expect that after having MS so long?"

I felt my appeals for help were largely unheeded by Dr. B, although she did provide needed medicines such as baclofen and prozac and later neurontin. She allowed me to try other medicines which might help me. My most difficult symptom was pain, and neither of us wanted me to be on something too strong and my body often had *more* pain from pain medicines.


Will be continued in Part 4-second part - Jane

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Jane's Continuing Saga Part 4-Second Part

by Jane D.
(southern Indiana)

And finally, hopefully....a CHAIR! ! !

And finally, hopefully....a CHAIR! ! !

(Documentation sent to Insurance expressing the need for a power wheelchair, second part of Continuing Saga-Part 4).

Dr. B. labeled me "benign" although by that time I was having symptoms that were daily: all the traditional MS ones, numbness, weakness, several kinds of pain, in-coordination, tingling, pain behind eyes for literally years, muscle spasms causing near constant lower leg pain, slurred speech in the cold, extreme weakness in the heat, tremendous loss of balance for years, sexual changes and sometimes trouble with judgment and short-term memory, etc. etc...

To my mind it was not benign, but since it was only a category and sort of a judgment call, I generally held in my irritation. About ten years ago I changed from seeing her every six months to just going once a year. In the meantime, I dealt with my MS myself or with my primary, Dr. J. H. I shifted from having Dr. B. be responsible for all my many meds to having Dr. H. prescribe and monitor them.

I "pushed through" for awhile these problems and chose to stay positive mentally, and tried to learn to ignore the obnoxious and painful parts of MS. Of course, pain is much more than obnoxious. I learned about every over-the-counter salve, spray, and patch, that might help--and sometimes they did help somewhat by changing the pain perceptions or substituting other sensations for the pain. I adapted my life to the multiple sclerosis as best I could. That meant sleeping more to deal with the fatigue, consciously reducing stress, limiting my involvement in the community, and my three children's activities, scrupulously avoiding heat, cultivating quieter interests, praying more, and trying never to hurry which seemed to make everything worse as my nerve impulses fought to get through.

For many years I stayed by my husband's side whenever I was out of the house and used his arm as a cane. I obtained a disability parking placard about 1990 which almost literally saved my life. At that time I was able to do 2-3 quick errands or short shopping trips. Today my husband does all the shopping and errands (poor guy.) I recently went to a favorite store and didn't last five minutes, even with a cart. My husband sometimes now pushes me in a turned around rollator, and it is not easy for either of us. I have fallen out of the rollator in extreme heat.

My urgent need for an electric wheelchair has come about this winter. Sometimes I can almost "taste" one as the need increases. It's a well-known fact that any infection in a person's body activates the MS. Once when I simply had a fever, I fell from a standing position while at Dr.H.'s office. I have also done this three times in past years without a fever--I suppose when the impulses just simply didn't get through at all to keep me standing.

I have had bronchitis since I had a bad cold in November! I seem to be in a position where steroids don't touch it, and I can only hope a change to Spring will accomplish what medicine had not been able to. I was on Bactrim-double strength twice a day for a dime size spot of MRSA which produced little healing.(1/09-2/09)

My immune system has obviously been very compromised. My bronchitis has been rough and constant this winter, and I have only had a few days bronchitis ever before. I have been on steroids nearly constantly the past couple months, as I recall, first, a dose pack, three weeks of 30 mgs the first week, 20 the second, then 10 the third. That didn't accomplish anything so Dr. H. had me take 20 mgs for two weeks then 40 mgs for two weeks. I am now on a taper which has meant a reduction of one half a table each week beginning at 40mgs. I reduced to 20mgs today. (3-23-09 changed to 60mgs)

I was also given an Advair discus 100/50 to supplement my Albuteral rescue inhaler. I use the Advair morning and night and limit the Albuteral inhaler to two puffs only twice a day to avoid heart palpitations. I have had several chest X-rays. My breathing tests have been 3.4 and 3.0.(3.5 the other day). My bronchitis is no better even though I haven't been tested for two weeks now, I can tell by all the coughing and loud mucus noise I make. I guess I think we've tried it all, and I'm waiting for the weather to have an effect. (Dr H.'s office is calling to get me an appointment with a pulmonary specialist when they can get me in).

It's clear to me that my MS has clearly changed from whatever it was before to definite secondary progressive. I went on March 4, 2009 to my new neuro, Dr. R. W, MD., and he thought so, too. I've been thinking of leaving Dr. B. for a good 15 or more years; I was one of her earliest patients, and after a few visits when she made it clear she didn't like me, I wanted her to change her mind, and tried to wait until she really knew me-- which never happened. I will see Dr. W. again in April, and we will evaluate where things are then. He feels I am definitely secondary progressive and a 6 on the EDSS scale, as I now need to use a cane full time.

Dr W. was not at all surprised after this length of time that I had become secondary progressive. He feels 80-90% of people who begin relapsing/remitting do so after twenty years. Dr. W. seemed to think I had been quite fortunate, and done quite well over the years, especially without a disease modifying drug. I've known many people with MS on the internet these past 20 years, I've been online, and I agree! If I need treatment in the near future (after April) he suggested he would order methylprednisolone, the only thing he thought appropriate at this time.

Dr W. saw no reason to try a CRAB drug or anything stronger at this point. I did see him when I was on steroids and provigil (which sometimes helps me be stronger to walk, for some reason). Because it was my first visit, and I had so much to cover, I didn't mention a wheelchair or really, my intense need; I am saving that for the second visit. Obviously my need for a wheelchair has come up rather suddenly--that's the nature of an MS relapse after this long with the MonSter, I guess.

My October, 2008 MRI report surprised me by using the word, "severe" in three different places. I have it on a CD, the doctor just handed it back and I filed it away in the old original folder of the baseline one. I looked at it in my computer, but wasn't able to learn anything, really. Dr. W. and I didn't do more than discuss it in passing this visit. The only report my old neuro had given was "no new lesions".

Besides indicating the "severe confluent periventricular white matter plaques compatible with MS" and "severe callosal-septal irregularity" being present, the report with the current MRI speaks to "small plaques involv{ing} the right aspect of pons and left middle cerebellar peduncle". No enhancing plaques were present (that's new ones contrast picked up). "The brain overall shows moderate to severe generalized cerebral and cerebellar atrophy for age". I don't understand this, and hope to learn more, but I do know this MRI was two months before my exacerbation in December, plus the fact most neurologists don't believe MRI results correlate with the symptoms very well anyway.

My need for a power wheelchair is evident to me each day. We have my mother's manual wheelchair in our garage, but there is no way my weak arms (soreness clear up to the shoulder immediately just pushing a shopping cart) could maneuver me in it. I've also tried my dad's walker and pushing down on it just further hurts my shoulders and arms both. The rollator is great since it gives me a seat at all times when I use it as a wheelchair, but it requires someone else to push it. Since my major exacerbation in December, it is only moderately helpful as it requires the ability to walk better and longer than I can; it does offer better stability than the cane, but because it is less wieldy, I don't turn to it as much as the cane. I have just invested in several new canes because when I need one, I need it close!

I'm not particularly eager to become one of the MS statistics after all these years, who DOES need a wheelchair; yet I know I do. I've been telling people for years the statistic that 75% of MSers NEVER need a wheelchair--an advertised MS fact. Well, now I'm afraid I've become part of the 25% who does! And why not, after over 36 years with the MonSter? Well, *I* look forward to the time I can have a seat whenever I need it!

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