Rapid Progression

[Lisasberry]

I am new to MS and this forum. I was diagnosed by my neuro two weeks ago, and have been referred to the MS Clinic/Research Foundation here in Oklahoma City. My first symptoms began last May after a bout of anemia and pretty highly elevated lymphocytes.

I have had nothing but a steady and rapid decline. Starting with loss of balance and fatigue in May. I now have spastic episodes where my legs cannot move, I must use a cane for support and balance to walk (legs are stiff), have visual overstimulation, and today I had to come home as my leg was hurting/stinging/burning so badly I had no use of it. I did my best driving home using my arm (it goes numb as well) to lift my thigh and move my foot from brake to accelerator.

Has anyone else experienced this rapid decline? I am 55, and 2 other family members have late onset progressive MS. My nephew had rapid decline as well. After 5 years he uses a wheelchair and cannot speak. I have compiled a timeline of symptoms and decline to give the new doc when I see her next week.

Thanks for any help...
Lisa

[Thinkimjob]

Hello, I'm sorry things are happening so fast. It took me 10 years for things to start to go bad and stay bad.
I hope it's not what you know it probably is.
And they keep saying MS isn't genetic.
Good luck.

[sich59]

That really sucks and I'm sorry to hear you are having to deal with this. I've heard of cases where the progression is rapid from the get-go. I think it takes longer for most to get to where you have progressed to in a short period of time (lucky you, huh?).

I wish you well.

[Kittianne54]

Unfortunately, this rapid progression tends to be the later onset MS. I was diagnosed about ten years ago with PPMS. My only symptom at the time was difficulty walking. I was 47. My almost 18 year old daughter was with me and I remember her saying to the doctor that it looked like MS, but my age didn't fit! (that daughter is now an M.D., in her first year of residency in Boston)

Like I said, I had a 'gait disturbance'. Now I'm in a wheelchair. I can use a walker a bit in the house, it's a slow, painful, process but it gets me from one room to another. Within the first year I had a cane, an AFO for my right leg, and started chemo (Cytoxan). As the years passed and I progressed, various treatments (methotrexate, cell cept, etc) were tried. Presently I'm on Rituxan. I've pretty much lost use of my right leg/arm, I have an implanted baclofen pump, I self cath, bifocals (I never wore glasses before), lost the ability to drive early in 2008.

When you described holding your knee to get your leg from the gas to the brake, it brought back memories. So much has happened. I don't mean to scare you, it's just crazy all the things I experienced over the last ten years that started out just walking funny.

[Windwalker]

I was Dx in 2007 at the age of 46. First symptoms showed up around age of 40...did not get noticeable leg weakness until 43.

From 2007-2010 went from walking to wheelchair. Seem to have leveled off but still continue to lose function at too fast a pace.

Everyone's case is different. I'm 50 now...keep looking to 57 as a major milestone. Could be bedridden...could be only marginally worse...only God knows, I do everything I can.

[jcrain9663]

I was diagnosed at 56. In hindsight I probably had MS for at least 10 years prior to that, possibly more. But at 55 or so, it seemed to hit warp drive. Luckily, my progression has leveled off a bit in the last year. I'm still progressing, but at a much slower pace at the moment. I'm still able to walk (short distances) and use a cane occasionally, but not all the time.

What helped me to stabilize:

1. Getting more rest
2. Stopped trying to do everything
3. Getting more rest
4. Take vitamin D every single day
5. Getting more rest
4. Eat healthier - no processed food
5. Getting more rest

Seriously, getting more rest has seemed to slow the progression. I was progressing much more rapidly until I decided I couldn't be everything to everybody, which is something I had previously struggled with. I took care of everyone else until I just couldn't do it anymore. Now I take care of ME. I'm lucky that my child is grown and my DH is understanding and extremely helpful.

[palmtree]

I can only say you are not alone. I was diagnosed at 57. Up until then I was vigorous, swam, exercised every day, read the fine print on everything that came in the mail, had a flower garden, cooked something yummiest to eat every day.... And now, I'm in bed most of the time. I only get up for doctors appointments and to go to the store where I don't really buy food because I never eat it anymore.

I'm on tysabri and my neuro THINKS its stopped the progression but when I first saw her she said with complete assurance, "I don't think you have MS." But she ordered the MRI. There were 3 plaques then, but by the end of the summer there were too many to count. It was then that I got the SPMS diagnosis.

I self cath, can't feel much in that area. I think the worst thing is that I get so tired and I go into these deep deep sleeps. When I wake up it takes about and hour to be able to move my body no matter how badly I need to get to the bathroom or how thirsty I am. Then I get up and my legs are so stiff, I have no.. balance and my right leg won't do what it's suppposed to. I'm going to be 60 next year.

I thought if I kept exercising I could beat it, but this is the first time in my life that I haven't been able to.

Every day is a struggle. I still drive but I probably shouldn't be.

It's the waking up with more disability every day that breaks my soul. Thank you for writing. Maybe we should form a club of people diagnosed in their 50s.


I wish there was was more help for those of us with late onset. Getting older has enough challenges. I'm going to post an email address just for MSers. Sometimes we need to talk to each other.

[kittin]

I am going to be 64 this month and I know that I am in progression. I was not diagnosed until after 50 although I feel that I had MS in my late teens/early 20's. I struggle to keep moving as much as possible, but each day is a challenge.


There seems to be no help to stop the progression so I do what I can and continue to readjust to what is.

[knuckle]

Well, estrogen protects against MS progression and if I were you I'd do everything possible to boost your daily endorphin production because endorphins are hormones that regulate your immune system.

Endorphins do this by modulating T-cell activity and those rogue T-cells are responsible for attacking your myelin sheath.

You can increase your daily endorphin production by:

Low Dose Naltrexone (LDN)
Direct sunshine on your skin for 30 minutes a day between 11:00am - 2:00pm
Exercise
Vitamin D3
Malic Acid + Magnesium
Eat/supplement with spices

I'd recommend all of the above. The reason why people who exercise a lot see their MS progress less rapidly is not because their muscles and joints become better conditioned but because exercise produces lot's of endorphins.

The reason why there is more MS in colder, gloomier climates is because people are endorphin deficient. They don't get enough direct sun on their skin - unless they get vitamin D through diet.

People who eat lot's of Tumeric, Cinnamon, Cayenne, Saffron also have low rates of MS and other autoimmune diseases. Spices produce endorphins.

LDN increases your endorphin production 2-300% the day after you take it.

Links on LDN:

http://www.ldnaware.org/ldn/112-usa-ldn-links.asp

http://www.youtube.com/user/TheLDNresearchtrust

Low-dose naltrexone (LDN): Tricking the body to heal itself

http://www.eurekalert.org/pub_releas...-ldn090211.php

Moreover, LDN is an oral medication, generic, inexpensive, and non-toxic, and has been documented to alter the course of both neoplasias and autoimmune diseases such as Crohn's and multiple sclerosis, making this drug especially attractive as a therapeutic agent.

[sniper762]

i have posted this before but i see you are new. i too am 55

PPMS PROGRESSION
13 DECEMBER 2005


I was first diagnosed with MS in August of 2002. My first symptoms were constant dizziness and difficulty maintain my balance while walking on uneven ground, such as encountered while walking through the woods during hunting. I was tested for possible inner ear problems and tested to see if my vision and inner ear were in sync with one another. Then I would experience temporary paralysis of my left leg when I would run (2 mile run every other day for pt at work). I would even get unusually fatigued faster when doing my pushups and sit-ups finally, the doctor did an MRI and a spinal tap that confirmed my ms diagnosis. At first the doctor said that it was probably RRMS but me not having any relapses, it was determined to be PPMS. Well, after a lot of doctor’s visits and many tests, I was finally medically discharged (It’s mandatory upon a neurological disease diagnosis) from the military on 20 December 2003. I was discharged with a medical discharge (60% temporarily disabled) from the Army. I was to receive about $1500.00 month with the federal tax withheld. VA was paying part of that and the Army part. I was told that I could also draw Social Security disability, but I would have to wait 6 months after discharge before I could start drawing it.

This made things quite financially tough. Between the $1600.00 per month non.-taxable from SS and the Army retirement, my income would be about the same as when I was working. Then in May of 2004, I had applied for VA’s non-employability benefits in which I would receive the same as if I were 100% disabled. I was awarded that in November of 2004 and began getting $2500.00 per month non-taxable from them. So now I get about $1000.00 per month more than when I was working. GREAT!

25 OCTOBER 2007

I finally got everything finished In Dec 2006 with VA on the van. They paid $30,000.00 of the total $49,000.00 which I financed the remainder with SECU for a variable rate of 5.5% APR and payments of 5 years at $378.00 per month

I don’t walk at all now and transferring from my chair is still being done, but difficult. Driving has become too difficult for me so as of a few weeks ago, I have stopped trying to drive. If I need to go anywhere, then I can wheel into the ramp van and Paula can take me

10 SEPTEMBER 2008

Although I am disabled to the point that I can’t walk or stand, I find things to do that occupy my time each day. My wife gets me dressed each morning and helps me out of bed and into my wheelchair. From there I go to the living room, where she helps me transfer into the lounge lift chair where I remain all day while she’s at work. Being that I can’t get up, I wear Depends disposable diapers. When I have a bowl movement, my wife cleans me up and changes me like a baby. I use a urinal for urination during the day and night. I have the telephone, the television remote, and the Bose radio system remote at my reach so that I may use at my desire. I sometimes listen to the radio, watch television, mostly discovery channel, history channel, military channel, national geographic channel or outdoor channel programs and documentaries that either are showing or I have previously recorded or I also have a CB radio (wild turkey) and a ham radio (KI4JDX) next to me that I sometimes talk on.

VA has given me a Jazzy electric wheel chair and also they have paid $3400 to put ramps to the house and rails on the walls. I am waiting now for them to approve monetary assistance for a handicap van with remote control door, ramp and hydraulic lowering system

24 March 2010

VA has given me another chair, one that reclines and has leg reclining extensions. They paid half of the cost of a$50k ramp van in 2008 and every two years they replace it with a new one for no additional cost. They just replaced it with a 2010 Toyota Seneca. I don’t drive now, but my wife carries me wherever I need to go. I applied, last year for a $60K Special Housing Adaptability grant which was approved this year.
They began, in January, after getting the contractor’s estimates, permits and inspections, building a 12 x 12 additional handicap accessible bathroom, with barrier free shower, adding a new air conditioner to accommodate it, extending the deck to the room, putting a roof over it with lights and fans and paving the drive to accommodate me taking my wheel chair to check the mail. They are almost through.


5 MAY 2010

I submitted this story to the National MS Society.

A writer, I am not. Nevertheless, I would like to share my story with the many who have found themselves under the influence of this dreadful disease.

I begin by saying that I consider none to have been any more active than myself. I spent 18 years in the US Army (of which I was mandatorily discharged in 2003 at age 46 due to my then recent diagnosis of ms), was an avid hunter, shooter, fisherman, trapper, hiker, runner, ball player, bowler and gardener among participating in many other interests and hobbies requiring the utmost of activity.

At first it was thought that my ms with the onset of constant dizziness, sudden temporary paralysis in my leg weaknesses and fatigue might be RRMS. Since I never had any relapses, just a constant debilitation, the doctors labeled it to be PPMS. I went from originally walking with a cane to needing a walker to a wheelchair. I now am bedridden. I can’t sit up or get out of the bed on my own, my arms and hands have limited use.

My wife and I have raised three sons (all grown now) and my youngest has witnessed the rapid advancement of my disability. I used several of the therapeutic drugs for several years with no positive effects (Avonex for 1 ½ years and then Copaxone for 2 years). Although statistics show that these drugs have no effect on PPMS, my doctor wants to give them a try anyways, hoping that I may be an exception to the rule and receive positive benefits (At about $1500 a month cost, it’s probably just their contribution to the drug industry). Thankfully, I have no current pain. Although I am aware of the usually accompanied depression associated with the disease, I have not experienced it. I remain mentally upbeat and keep a positive outlook. I occupy my time by watching TV, listening to music, talking all over the world on ham radio, reading and surfing the internet. I take pride in my past accomplishments, cherish my memories and love to share them with others.

The VA and SS disability compensation are financially sufficient and I have taken full advantage of the grants and the services that the VA offers. I am thankful for the ms society's many services such as the magazine and the online chat rooms and info available to keep me informed. Although, I seem to be in a very small percentage (10%), of the ms group, I try to keep company with them. I have heard of those with ms that are completely paralyzed from the neck down. It is my wish that that those affected minimally by ms, are not intimidated by my condition, yet understand that ms effects differently to different individuals.

I have a Facebook account (Murphy Riggan) and my email address is **email address removed as per MSWorld guidelines - this may be manually put in your profile for registered, logged-in members to see**and I welcome any visitors.

6 JUNE 2011
Around the beginning of the year I started using an external catheter at night. I would have muscle spasms and spill my urinal in the bed sometimes when I used it. I can still manage the urinal during the day though. I have difficulty turning over in bed, something I must do often to avoid pain in my legs and arms due to lying in the same motionless position. I manage to turn over with the aid of the attached bed rail but I sometimes need help uncrossing my legs. I have to keep my feet out from under the cover for they stay hot all the time. When I get hot, from hot bath water, summer temperatures or fever from the onset of a flu bug or virus my ms is exaggerated and I become very weak, sometimes to the point of not being able to even move my arms, hold my head up or even speak clearly. This makes it difficult for my wife to handle me (dead weight) and sometime I am transferred to the VA Hospital via ambulance. I have been there several times in the past few years with diagnosises of urinary tract infection or dehydration (my bad; I don’t drink adequately). As of June of 2010 VA has been sending a home health care person to my home for 2 1/2 hours daily M-F to help with feeding and personal hygiene. I can feed myself with finger foods, burgers and sandwiches but I can’t manage utensils. I drink through a straw or sippy cup.

[mystery37]

WOW!!!!!!!!!!!!!!!!!
Is not even the correct word to use for sniper 762. You are surely and inspiration to me and I hope that many msers take the time to read your blog. You are awesome and I really truely appreciate you sharing your story with us. You have turned your condition into the best success story. May you continue to inspire many and please keep posting as I will be looking for your insight and positive outlook.

sincerely,

Mystery37

[LostCupcakes]

In October 2010 I started noticing walking problems. On Halloween my legs just kept refusing to work correctly and kept having to sit down and rest since legs just wouldn't carry me any further.
In January 2011 I was forced to stop driving due to powerful leg cramps that would lock up my legs and stick them straight out while trying drive. These cramps came randomly and with no warning. Almost got in 2 wrecks with my daughter with me. Scared me to death.
In June 2011 finally swallowed my pride and started using a walker.
In October 2011 had to start using a wheelchair.
In December 2011 finally officially diagnosed with MS.
In January 2012 was told by neurologist that even with PT and OT and daily light use of my walker that I'll never get rid of the wheelchair.
In February 2012 started Avonex.


I am only 28.

[2dwall]

I am new to this forum. I will be 49 this month and was just diagnosed 03-19-12 with MS. My neurologist said that after viewing my MRI she think that I have had MS for several years. About 6 or 7 years ago, I started having difficulty walking, my left knee began giving me problems. I was sent to an ortho DR. and he did orthoscopic surgery for a torn meniscus and arthritis. Needless to say, I still had difficulty walking. It gradually became worse and for ther last 2 years, whenever I would go to the grocery store or anywhere I would have to hold my husband's or kids arms.

I always felt I was such a burden, I had surgery on my knee so I must be able to walk....right?? Just this past year I am unable to walk in our home without reaching out to something or someone to steady myself. I began using a cane around the house, still use hubby when out and the shopping cart when in the store. While I am thankful to know the reason for all the problems that I have been having over the past several years, the thought of symptoms never improving is hard.

I started Avonex 1 month ago, so far not too many side affects. I have an appt. with my neuro Dr. tomorrow and she is going to do the 25ft. walking test to see if I qualify for Ampyra. I talked to the nurse today and she said that I would be able to use a cane to walk but would not be able to hold on to anyone. I understand that this is a timed test. I don't know what they are looking for in the test....does anyone know? Not speed, I hope!!

Anyway I am glad that I dound this message board, helps to know that I am not alone going through this.


**post edited by Moderator to break into paragraphs for easier reading! many people with MS have visual difficulties that prevent them from reading large blocks of print**

[bryant bunn]

I am new to the site and have PPMS. It has been a rapid progression also. I was diagnosed 1-1/2 years ago and have gone from running and doing what I want to an AFO, cane and fatigue. The fatigue is terrible. My right side is the affected area, leg/hand. I get up everyday with the goal of how to save energy. I am a LDN user because my neuro says no FDA approved drugs will help. I take vit D daily also. I am 45.

Everyday is a blessing and everyone has there own struggles.

Stay positive and keep moving!

[jcrain9663]

I have also started to progress again since my first post in this thread. I'm 60, and was diagnosed about 4 years ago. I probably had MS since my early-mid 40's, that went undiagnosed.

I now use a cane a lot (and find myself thinking that soon that might not be enough), and find walking extremely painful. I've also started having spasms in my legs and back. I just went to the neuro yesterday for the first time in a year and he verified that I'm now progressing much more rapidly. He couldn't predict if this progression would slow down, speed up, or stabilize. He said to wait until fall to decide about working since this is such a beastly summer.

I plan to keep working as long as possible, but it might not be much longer before I have to at least cut my hours.