[PegMeerkatz]

Hi, my name is Peg, I am new to this forum.

I am 48 years old (49 next month) & I have had MS for over 25 years. It became progressive probably about 2 years ago. In the prior 8 years I had frequent relapses; the worst in 2002 that left me with significant cognitive & mobility problems & I had to retire.

I have exhausted ALL MEDICATIONS; I built antibodies against some; had allergies to others & never having gotten any relief from any of them I REFUSE to take any of the new medications. A medication has to be "out there" at least 3 years before I touch it, I DO NOT want to be a "statistic".

OK so here is where I am at; in January 2010 I moved in with my mom. It was partly financial but I really was left with few options. Social Services felt I was not safe living along. It MIGHT have to do with my getting "stuck" in bed several times (I got in a position I COULD NOT get out) or MAYBE it was because I kept doing "dumb" things like leaving the oven and/ or stove on; locking myself out etc. Or, one more thing, maybe it was all the falls... I almost broke my neck in one fall; herniated disks in an area the doctor said just a little higher would have stopped my breathing. Another fall I fractured the little bone at the end of the sternum called the xyphoid process. I also was starting to look like an abused child from all the bruises, bumps & scrapes.


It took me a long time to accept that I had MS. When first diagnosed I went back to school, completed college got an advanced degree (all while in a wheelchair). I then embarked on a career as a subtance abuse counselor working with MICA (mentally ill chemically addicted) patients. Because of my experience with "the system" I devoted my career to working with underserved populations; homeless, mentally ill, those abandoned in nursing homes. I had an opportunity to work in some of the worst areas of Queens NY; it was an "experience"; hard work but rewarding.


After 9/11 I was chosen to head an aftercare team for first responders but I was only back @ work 5 months following an MS relapse that kept me out of work 4 months. My neuro said it was an honor for me to be chosen but I needed to decline because he did not feel my health could take the stress or adverse conditions in the area.

I became a supervisor for an aftercare team in an adult home in one of the worst areas of Queens (South Jamaica).


The MS which NEVER let me forget it was there over the years became VERY ANGRY at the promotion & added stress; within a few months it seemed as if the MS was winning again.

A cousin who lived in Jersey had a rental condo that was empty & she offered me the opportunity to rent the condo for a year with the option to own. Though I never lived outside of NY this seemed like the change me & my MS needed. I went to Jersey before the move & secured a non supervisory position. I was working in a Detox/ Mental Health Ward in a hospital in Trenton. I thought a regular job with a regular schedule was what me & the MS needed. Instead I found myself assigned to the 3 pm to 11 pm shift. VERY OFTEN staff that was scheduled to come in @ 11 & work the overnight WOULD NOT show up & I would be MANDATED to work overtime. Sometimes the patient population demanded that more staff was needed on the morning shift & I was MANDATED to come in for the shift before my shift then work my shift. Needless to say the MS DID NOT react well to this.


I soon found that the MS Fatigue was overwhelming & the more tired I was the weaker my legs were. Within 2 months of taking the job I found myself unable to get from the staff parking lot to the hospital without using a folding cane (would want anyone to see it - you understand). That DID NOT work for long I was soon needing to ambulate the unit holding onto the walls. I started noticing subtle cognitive changes; I could not memorize patients charts or stats like before & began relying on "crib notes". Then I had a "needle stick" (no lasting effects) when I was drawing blood & my hands did not go along with the process. The end came a short time later when I was leading an educational group & a fight broke out among some patients. While participating in the "take down" I fell & COULD NOT get up. Staff came to my aide but I was declared "unsafe for the unit" & let go.


I was determined not to give into the MS; no hospital & rehab for me. Soon the MS took over & I began experiencing swallowing difficulties. While having lunch with a friend (who was fortunately a nurse) I choked on food, after doing the Hemlich manuver she took me to the hospital. I did the steroid thing then they decided to try me on Avonex. At first there were no ill effects but then my blood count became dangerously low. Ultimately my immune system "shut down". I had to be kept in isolation to prevent infection & spent 2 weeks undergoing plasma pharesis. From there I was transferred to a rehab where I spent the next 3 months.


I needed a rollator walker when I left the hospital & a scooter for longer distances. This posed a BIG PROBLEM because my condo was on the 2nd floor of a walk up. I developed a plan where I would do what I needed in the condo then make my way downstairs to do what I needed in the community. I had to time my "community trip" to cooincide with when the mail came because I would NEVER be able to make a 2nd trip up & down the stairs.


I moved back to New York (Long Island) & was started on Rebif. Over the next 2 years I regained much of my strength & while I still required the scooter for long distances I could most often ambulate short distances without any assistive devices. 17 months after the relapse in Jersey I had another "mild" (by comparrison) relapse that mainly just affected my vision. I was started on steroids. Always prone to High Blood Sugar this time after the IV then Oral Steroids my sugar remained high. I started taking oral diabetes medication.


28 months after the Jersey relapse I started experiencing "odd" symptoms & was weaker & more fatigued. Tests showed that I had developed VERY HIGH LIVER ENZYMES. I was taken off the Rebif IMMEDIATELY. The fatigue & particularly the cognitive problems & extremity weakness began to increase over the following weeks. I was put on Copaxone & had a VIOLENT ALLERGIC REACTION.


From the time MS medications became available (years after I was diagnosed) I had been on this medication or that - we were at the end. I was offered Tysabri but felt the RISK OUTWEIGHED THE BENEFIT.


Late 2007/ early 2008 the Cognitive Problems were getting really bad & the mobility problems were getting worse. I started experiencing pain several times a week which was diagnosed as "neuropathic" pain. When the pain became more frequent I was hospitalized & put on IV Steroids. During my stay in the hospital I was on insulin because my sugar was as high as 620 at one point. I was assured when I left the hospital & was off the steroids I could return to taking oral diabetes medication.


I REFUSED to go to rehab from the hospital for several personal reasons. I left the hospital weaker & more cognitively impaired. From that point on I continued to get progressively worse & finally the neurologist (after several tests) concluded that the MS was becoming progressive. Comparing brain MRI's I not only had SIGNIFICANT SCARRING but brain atrophy as well. Then to boot the oral diabetes medication DID NOT control my sugar & I had to go on Insulin PERMANENTLY. I had complained about taking Rebif 3 TIMES A WEEK & NOW I NEED to take Insulin 2 or 3 TIMES A DAY NOT TO MENTION ALL THE "FINGER STICKS". (I do not believe in god or a higher power but this certainly has to be "karma").

FAST FORWARD... by SEPTEMBER 2010 it was OBVIOUS I was having SIGNIFICANT PROBLEMS living alone even with in-home help 49 hours a week. The decision was for me to move in with my mom. She lived alone in a 2 bedroom condo (her husband died almost 4 years ago). The master bedroom, with the attached bath & walk-in closest was fixed up for me. This is where I spend the greater part of every day; sitting (or laying) in my hospital bed; with my laptop & of course the boob tube.


I was given a motorized wheelchair in January but first the wheelchair lift on my adapted van broke then the wheelchair broke; still trying to get someone to pay for repairs (long story). I can get around somewhat as long as a lot of walking IS NOT involved or my destination provides motorized carts for the disabled. Getting in & out of my adapted van is a bit tricky. I bought a wooden stepstool at the craft store & attached a wooden dowel to it. I step up on the stepstool & into the van. I hold onto one of those "gripper" things that fits in the door. I can get all but my left leg in the van for that I have a "leg lifter". I then use the end of the "gripper" to pull the door closed. If I lean to pull the door shut I will fall out.

THE MS IS WINNING THE BATTLE.

I have 24/ 7 CHRONIC NEUROPATHIC PAIN that has not responded to ANY medication. If the pain scale went from 1 to 20 instead of 1 to 10 it WOULD NOT be sufficent enough to measure the pain I experience MOST DAYS. My sleep is ALWAYS BEING INTERRUPTED.


The COGNITIVE PROBLEMS ARE REALLY BAD. On a good day I have 2 BRAIN CELLS THAT WORK on a BAD DAY (most days) THEY DO NOT WORK TOGETHER. I can get lost driving around the corner. I live in a unique looking building that is visible for quite a distance. Some days I can right in front of it & wonder - where do I live? One day I put Ice Coffee in the freezer so it would get really cold. Mom went to get it for me later & found my car keys in the freezer with it. Most recently I lost one of my home phones (I have 3) I looked everywhere & was unable to find it. A couple weeks later I went to get some Goldfish Crackers as a snack - THE PHONE WAS IN THE BAG OF GOLDFISH CRACKERS. (I never did find my cell phone which I also lost). There is a PLUS SIDE I DO NOT remember "faces" anymore so EVERYONE is a stranger to me - I am always meeting new people.

Mom & I have an ongoing issue. I CANNOT get her to understand that if she asks me to do "A", "B" & "C" I will PROBABLY do it. But is she asks me to do "A", "B" & "C" as part of a lengthy complex conversation I will PROBABLY have NO CLUE in the end what she asked. Yesterday I needed to make a joint appointment for us. I simply asked what days she was free next week. She DID tell me but she also told me about her plans for the NEXT 4 WEEKS & her PLANNED VACATION IN MAY. After this 20 minutes of mishagosh she said "now you know when I can make it right?". I HAD NO IDEA. But (as usual) SHE GOT ANGRY WITH ME!Whatever!


I am single & childless by choice. I never imagined @ 49 years old given this decision I would be changing diapers (especially not my own) & packing a diaper bag before I leave the house.


14 months ago I again developed swallowing problems. This time they HAVE NOT gotten better. Again there is a PLUS SIDE I was VERY OVERWEIGHT & because I now CAN'T EAT MOST FOODS I LOST OVER 80 pounds! I have not been this thin since High School. Many days my "swallow" DOES NOT work & even when it works it DOES NOT work 100% & my sense of tast IS NOT "right".


I also have problems with my speech & when I am on the phone people OFTEN mistake me for a male. I called the MS Society & asked for Gene they said "she isn't here I will give you her voicemail" I said "No, Gene, "he"" again they said "she" is not here & connected me to HER voicemail. I called back & the scenario began to repeat itself I FINALLY had to spell it G - E - N - E. The secretary said I need to speak more clearly - WHATEVER! People I speak to on the phone that know me & know that I AM NOT a male OFTEN ask me if I have a cold or they question my sobriety (I DO NOT KNOW WHICH IS WORSE). The best is when I am looking for something, say a pen I can go into elaborabote detail about what a pen does but CANNOT "find" the word PEN. Sometimes thoughts are in my head but DO NOT make it out of my mouth correctly. I get so ANGRY sometimes because I know what I want to say but CAN'T say it.


After the Jersey relapse I started having REALLY BAD ANXIETY ATTACKS & QUITE A BIT OF SOCIAL PHOBIA. In 2006 I got a small dog (11 pounds) & had her trained as a Service Dog. When I had to go on Insulin & the diabetes got worse I OFTEN DID NOT test my sugar often enough. She was taken for more training & became a diabetic alert dog. Most recently she has learned some MOBILITY TASKS. I often would go over a curb NOT seeing it now she STOPS ME. If I walk in the middle of an aisle in a store I risk falling; she guides me to the side of the aisle & MAKES me walk along the edge. If a stock person comes up behind us & I DO NOT hear them; she does & guides me out of the way.ESPERANZA IS MY LIFELINE. Her name means HOPE. The watchword on the MS Band when I got her was HOPE, that is how she got her name.


Sadly there are A LOT of people (including the police) who are unaware of Service Dogs PARTICULARLY SMALL SERVICE DOGS & I have face MORE THAN MY SHARE of DISCRIMINATION & EVEN ABUSE.

I started a campaign to raise awareness of Service Dogs PARTICULARLY SMALL SERVICE DOGS. Then I faced DISCRIMINATION (because of her) as well as ACCESSIBILITY ISSUES here @ my condo. IN THE END I WAS VICTORIOUS BECAUSE I KNEW THE LAW & HOW TO ENFORCE IT.


I began to realize how many disabled people are either UNAWARE of the rights afforded them or they are UNABLE or UNWILLING to take steps to enforce them. Hence the quote "Our lives begin to end, the day we become silent about things that matter". We as disabled people need to SPEAK UP when things ARE NOT "right" or as they should be - this is the ONLY WAY that change will occur.


I am in the process now of forming a non profit that will be a RESOURCE HUB for DISABLED PEOPLE. Additionally I & others will be giving educational lectures on Service Dogs, Disability Ettiquette, Accessibility etc.; I call my "project" EsperanzaEnterprises. Forming this non profit has been the first thing that I have really taken an interest in or been passionate about since retiring.


That is ME - THE GOOD - THE BAD & THE UGLY!


I wanted to let everyone know WHO I AM, WHERE I AM, WHERE I CAME FROM & WHERE I AM GOING but I PROMISE FUTURE POSTS WILL NOT BE THIS LONG


Looking forward to speaking to people in the forum; have a good evening.

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

[Alffe]

Hi Peg and welome to NeuroTalk. Here is the link to our very active MS forum..http://neurotalk.psychcentral.com/forum17.html

It's a great place to find support and share information. I'm glad you've joined us.

[Friend2U]

Peg,
So nice to meet you and glad you decided to join us. It sounds like you have been through a lot. Please know that you have found folks here who really care! Please join in and let us know how we can help!

How old were you when you were diagnosed, and what symptoms were you having back then? How did you come to be supect that it might be MS?


Best Wishes,
~Friend

[PegMeerkatz]

I had symptoms going back to my mid-teens; extreme fatigue following my softball games; sleeping for days after a bike run (I did marathon bike rides); weak limbs; sometimes blurred vision when I was overheated. However, I was heavily involved in alcohol & ah... other substances. So everyone attributed it to that. There was nothing serious enough to cause any long lasting symptoms. When I was 22 I was in a car accident - of sorts.

I was gettting onto a parkway & had a tire blowout. There were 3 of us that experienced the same things (something was sticking out of the curb). We were about 20/ 25 feet off the parkway up on grass changing tires. A young man stopped & was changing my front right tire. I was leaning on the side of the car; a small hatchback. A drunk driver getting onto the parkway saw the thing sticking out of the curb & swerved to avoid it (I am told), he lost control & struck the back of my car (I was the end car).

I woke up in the hospital with a concussion & a fractured elbow. I was told I was thrown over 20 feet. The young man changing my tire was killed when my car came down on top of him.

Following the accident I started having symptoms unrelated to the accident; mostly weak limbs & coordination problems. Doctors spent a great deal of time trying to say it was the drugs & alcohol &/or it was all in my head but when my vision became affected someone gathered all the test results then did a spinal tap as well as some visual tests which confirmed multiple sclerosis; I was 23 years old.

At the time I was diagnosed there were no medications & the doctors knowledge was limited. They call it a time of diagnosis & adios. I eventually got weak enough to be in a wheelchair. By this time I was trying to get clean & sober & had began college after almost 8 years away from school.

I got & stayed cleaned & sober earned my degree & advanced degrees & began a short career as a drug & alcohol counselor working with mentally ill adults; the underserved populations homeless, adult home (deinstitutionalized mentally ill) & those abandoned in nursing homes.

About 10 years ago I started having MS cognitive problems & following an MS relapse I was advised to retire.

9 years ago after 16 years clean & sober & discouraged by having to retire, having to sell my condo & return to NY I relapsed.

With the help of my good friend (therapist, mentor, my everything) I got back into recovery & have almost 7 years clean & sober again. Sandra started out as my psychiatrist helping me get clean & sober & work on family issues; I saw her for over 20 years. She was a couple years older than I am & had lupus. We became friends over that time.

Sandra's birthday was in December & I could not reach her. I was supposed to see her the 1st week of January 2003 & she called & cancelled she left a message on my voicemail saying she was not feeling well but would be in touch. I kept trying to reach Sandra after that but she DID NOT call back then her voicemails were full (home, office & cell phone). On the morning of my 3rd anniversary clean & sober January 16, 2003 I KNEW something was wrong. Sandra promised to be there & I still could not reach her.

Sandra rented her office from a psychologist. I called the psychologist when Sandra's voicemails were still full. He very matter of factly said "Sandra died a couple days ago" & he hung up on me. With a little detective work I reached Sandra's husband. She contracted an infection & then the lupus began attacking her organs. Sandra's husband made lots of promises; he was going to return all of my journals (Sandra had my journals dating back to childhood); some books & other things that she had borrowed as well as some chotskies I gave her over the years. Instead a few weeks later he changed his numbers & I could not reach him. I not only lost Sandra I lost a good chunk of my life.

I have struggled almost every day of my 48 years (I will be 49 next month) & with Sandra I could handle almost anything that came along but when Sandra died a part of me died. I have not been the same & do not think I will ever be the same again. She was my lifeline.

Now the MS is secondary progressive bringing it with it massive limitations & challenges & most days I find it just too hard to cope & often retreat to my bed for days at a time. There have been other therapists since Sandra, I am seeing one now but it can NEVER be the same; Sandra was a part of me.

I HONESTLY BELIEVE that I would be coping a lot better with the MS & a lot better with life if only Sandra were here.

Many people live by the acronym WWJD (what would jesus do) I DO NOT believe in god but almost every day when faced with some difficulty I think WWSD? (what would sandra do)

Last night as I flipped channels on TV Suzy Orman was on & saying something about life not being short & how people can live 85 or 90 years or more. All I could think was how in the world can I make it to 50 never mind 80 or 90.

[Alffe]

Hi again Peg. You have certainly had more than your share pain and grief in your life..I am sorry. Again I leave you the link for our wonderful MS forum...http://neurotalk.psychcentral.com/forum17.html

This Newcomers Forum is more of an introductory forum.
MS'ers understand what you're having to deal with and can share what "works" for them in coping with it all.

It is difficult to read the color of your posts and it would be most helful if the print were larger and the paragraphs shorter. Some of us suffer from problems with our eyesight and attention span but we all want to help give you some relief from all that you are experiencing. We are good listeners.

[tamiloo]

Just wanted to say Welcome to Neuro Talk!!
Alffe gave a link to one of our busiest forums...hope you can find some answers there...feel free to jump in anywhere you like...