This article has been written by an MS patient who really wants to know how MS will progress in the year to come. I have long been of the opinion that multiple sclerosis (MS) is not fatal. And my research here has not changed that view. What will the final stages of MS hold?
MS shouldn’t slow you down!
However, MS is a progressive disease and the MS symptoms will only worsen over time. This may lead to serious complications which could end my life.
I was diagnosed with MS in 1994 after having a lumbar puncture and an MRI scan. These tests were carried out at the Aberdeen Royal Infirmary. I had been working from the Aberdeen office at the time.
End-Stage MS Symptom management
If one can successfully manage the final stages of multiple sclerosis, one can avoid the life-threatening complications that might arise.
For many years, my primary care doctor was my G.P. She was a lady doctor who seemed to have a good understanding of the available medical treatments for my nervous system complaints.
My doctor was a similar age to me and, given that at am now of retirement age, she retired and I was left in search of some new health professionals.
Like many people with MS, I began with relapsing-remitting MS. In many ways, the early stages of multiple sclerosis were far more severe than my current life with secondary-progressive MS.
MS doesn’t have to mean the end of your dreams.
What Is the Multiple Sclerosis Life Expectancy?
In general, MS patients have a life expectancy that is 7 years shorter than those without multiple sclerosis. It is only in very rare cases that MS is known to be the cause of premature death.
Secondary Progressive MS
In many ways, the onset of secondary progressive MS was a blessing. The MS symptoms were more constant but less severe. Yes, my bowel problems became part of daily living and my mood swings featured more often.
However, with the help of healthcare professionals, the symptoms of MS did become tolerable and I learned to adapt my lifestyle to compensate.
How Multiple Sclerosis Progresses
In line with normal expectations, my MS journey followed a fairly standard path. I received my diagnosis after a lumbar puncture and an MRI scan confirmed the presence of brain lesions. I was not given a diagnosis of MS because at this initial stage and had only CIS (Clinically Isolated Syndrome).
It took approximately five years before my next relapse, at which point my psychologist was able to make the multiple sclerosis diagnosis.
Then in line with other MS patients, my RRMS progressed to SPMS after roughly ten years.
MS is not a death sentence.
What Are the Common Symptoms of MS?
During the early stages of MS, Fatigue, numbness and tingling and balance problem are the common symptoms.
However, the MS symptoms will change, over time and the symptoms in the final stages of multiple sclerosis are likely to be very certain symptoms that differ from the MS diagnosis stage.
Once again, the dysfunctional central nervous system, kept me awake last night with muscle spasms and the twitching of restless leg syndrome so typical of MS patients.
You can live a full life with MS.
Dealing With the Final Stages of Multiple Sclerosis
Discussing the final stages of multiple sclerosis seems to be a defeatist attitude. But, because MS is a disease of the brain and spinal cord, one must face the reality that this is a progressive disease and your healthcare team will want to talk about the need for palliative care.
This advance care planning must be considered by your healthcare provider because while the disease progresses, you are going to be less able to make end-stage decisions for yourself.
Problems in Vision and Mobility
Often considered to be end-stage symptoms, vision problems and mobility issues have been evident since my MS progressed to the SPMS stage. I do not consider myself to be in the final stages of multiple sclerosis but, the evidence may be contradictory.
MS doesn’t have to hold you back.
How long can people live with MS?
With suitable personal care, MS patients can enjoy a long and productive life. Most symptoms of progressive MS do not present life-threatening complications. But, one must always be alert to the fact that end-stage MS will be an inevitable outcome of multiple sclerosis.
Multiple sclerosis can present some serious complications and I am not unique in experiencing swallowing problems that can lead to respiratory infections if not correctly managed.
I have had many severe bladder infections and live with constant nerve pain. I count myself lucky not to have primary progressive MS. A good friend does have this condition and needs constant personal care.
How To Maintain Quality of Life
Multiple sclerosis is not, in itself, a terminal illness. Yes, I was initially diagnosed with RRMS and my failing brain function and other symptoms, constantly remind me that I must treasure independent living for as long as possible.
While my multiple sclerosis was in the RRMS stage, I enjoyed long periods of disease inactivity. This is considered to be positive for my long-term outlook.
What Is End-Stage MS?
Late-stage MS is considered to be when your MS symptoms have advanced to a point where everyday tasks become impossible. Respiratory issues will cause difficulty breathing and other health conditions start to mount up.
Not everyone experiences the same MS journey. Muscle wastage from lack of exercise can weaken the respiratory muscles during the final stages of MS. Swallowing problems can cause choking and coughing making daily living complicated.
You are not alone in this fight against MS.
When one reaches end-stage MS, palliative care has to be considered. Life in hospice care is not at all appealing but there may come a time when hospice care is the only viable option.
To me, palliative care is an end-of-life option. The final stages of MS are going to be challenging and hospice care costs money and I don’t have health insurance.
How Hospice Care Can Assist
One of the advantages of hospice care is that you will have trained professionals to help to tend to your pressure sores that will come as you become more sedentary.
The general population will regard life in a nursing home as something only for the elderly and infirm members of society. Indeed, many elderly MS patients will have to live in a nursing home. But, MS is no respecter of age and many young people with MS will need palliative care.
As we age, age-related diseases like osteoporosis can affect bone density or lead to blood clots increasing the risk of stroke. For this reason, hospice care can improve quality of life and give us peace of mind in our twilight years.