Primary Progressive MS(PPMS): Symptoms,vs.RRMS,and more?

A diagnosis of Primary Progressive Multiple Sclerosis (PPMS) is a diagnosis that can fundamentally alter one’s life.

The definition for PPMS given in the MSHUB glossary is this:

“Primary progressive multiple sclerosis (PPMS) is an uncommon, slowly progressive type of multiple sclerosis (MS), where people have steadily worsening symptoms but don’t usually experience distinct attacks or periods when the disease ‘attacks’ like in relapsing-remitting MS (RRMS). Although PPMS begins with similar symptoms to RRMS, including vision problems and muscle weakness, over time these initial symptoms may recede and cognitive difficulties become more pronounced.”

I was recently in conversation with someone who has been diagnosed with Primary Progressive MS. While sharing, I asked if she had experienced others who were affected by this diagnosis.

It was then that we realized how challenging our respective journeys with PPMS had been and how acutely aware we were of the lack of information available to those living with PPMS – and for their friends and family. This article is not to provide medical advice, but rather an informational piece is written from a patient’s perspective to supplement current knowledge about PPMS and help connect patients living with it.

I have RRMS (relapsing-remitting MS), which means I do experience distinct attacks or periods when the disease ‘attacks’. For me, these episodes are usually once every one-two year lasting anything between 10 days and 5 months each time. When these episodes strike they are very disruptive.

I experience a range of symptoms including muscle weakness, spasms, and loss of sensation in my face and fingers. And for reasons unknown to me, they always seem to occur when I’m traveling overseas or writing a paper that’s due the next day! PPMS is different from RRMS in multiple ways:

Firstly, there are no distinct attacks with PPMS where someone would have periods when their MS was active and periods when it ‘disappeared’. Not everyone with PPMS experiences this but many do describe it as having one long episode without distinct breaks or reprieves i.e. ‘the invisible illness’.

Secondly, since just after my diagnosis with RRMS in 1993, I’ve been told by doctors that I would be unlikely to gain or lose any function – so my MS is static. This is not true for all with PPMS, but some do experience relapses where they will have remissions (periods of symptom relief) which can last for many years sometimes even decades.

Thirdly, due to the invisibility of this diagnosis and its lack of distinct episodes, finding others who are living with it can be challenging at best! The only commonality between those with PPMS is that we all have no history of distinct attacks i.e. RRMS (relapsing-remitting MS). We may share other diseases like anemia or thyroid problems but these are secondary diagnoses related to our MS not part of the same disease syndrome.

Fourthly, symptoms are often more insidious with PPMS. The symptoms are usually subtle at first but can become severe – over time. I recognize this is highly subjective, however, symptoms typically include fatigue, balance problems, and cognitive difficulties.

Like most conditions of aging these symptoms intensify over time i.e., there is no period where they disappear or lessen for a substantial amount of time without the patient noticing another symptom creeping in slowly to replace it along with some fluctuation in current symptoms, but never enough to be considered an attack by any means. Also worth noting is that one person’s symptoms may not be felt at all by someone else so describing symptoms can be challenging even when face-to-face!

As mentioned above PPMS is a condition where at first glance at a person you might not think they have MS or any other chronic illness. Furthermore, in the early stages, many people with PPMS can manage quite well for many years without difficulties. For myself, I was diagnosed when I was 40 years old after having developed problems walking and fatigue in my early 30s – nothing more than that though.

Primary progressive ms treatment:

Natural Treatment for Primary Progressive Multiple Sclerosis

There are various treatments available for multiple sclerosis (MS) but none so far is effective. However, there is good news for people suffering from primary progressive multiple sclerosis (PPMS). They can now hope to recover from this disease with the use of natural treatment options. Natural treatment options have become the first choice ever since they do not cause any side effects and can help you improve your quality of life.

Primary progressive multiple sclerosis is a neurological disorder that affects an individual’s motor function and thought process. This condition cannot be reversed; instead, medications can only slow down its progression. One out of 10 people with MS experiences the primary progressive type in which symptoms start showing up gradually, without any remission or relapse.

The natural treatment for primary Progressive multiple sclerosis includes:

Chinese herbal medicine is a good option for those suffering from a progressive form of MS as it is successful in improving the quality of life and easing symptoms such as spasticity, urinary dysfunction, and pain associated with the condition. According to a study conducted at Oregon Health & Science University (OHSU), Chinese herb dong Quai reduced the rate of progression and improved bladder and bowel function in patients with PPMS.

Another medication derived from this herb has also been known to provide relief to people who have spinal cord injuries and other forms of neurodegenerative diseases like Parkinson’s disease. Natural treatment options like acupuncture, massage therapy, yoga, tai chi, dietary supplementation, and reflexology are also effective in the management of symptoms.

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