Let's continue looking at characteristics of Progressive MS. I already talked about the different types of MS and focused specifically on Secondary Progressive. As this series continues, I will discuss research and clinical trials, medications, "a day in the life," and other topics relating to the progressive types of MS. Today the focus is on Primary Progressive and Progressive/Relapsing MS.
Remember, most MSers have Relapsing/Remitting MS (55-85%). Only a small minority of MSers have Primary Progressive (10-15%) and Progressive/Relapsing MS (2-5%). There is an information void for these types. That information can be confusing to the patients, and maybe even to the doctors who see so few cases compared to the other types.
All types of progressive MS are characterized by a gradual increase in loss of function leading to disability. The types of progressive MS differ only in disease course and timing. Notice how small the PP and PR boxes (in blue) are on the graphic.
Primary Progressive MS (PPMS)
If the initial MS diagnosis is not Relapsing/Remitting MS, it is usually Primary Progressive. Somewhere between 10% and 15% of all MSers have this type.
From the beginning, PPMS is a steady progression of greater affliction with little or no recovery. It is usually diagnosed about one or two years after the initial presentation of symptoms, based on:
* a neurological history
* a primary MRI, or a series of spinal MRIs
* evoked potentials tests indicating a slowing in nerve conduction speeds, especially a higher incidence of delayed visual evoked potentials
* a spinal tap showing oligoclonal banding in the spinal fluid
Starting with an initial attack, PPMS is suspected if the disease course progression lasts a year or more. Some doctors prefer to wait a minimum of two years. This leaves the patient in limbo and frustrated, and many of us know that feeling.
What about walking? An MS diagnosis of any kind often brings with it a fear of wheelchairs. Leg involvement of some degree is experienced by MSers of all types and up to 80% of MSers with PPMS, but that is often slow coming on. Seven years after diagnosis, 25% of people with Primary Progressive MS need assistance walking (for instance, a cane). By the 25-year mark, up to 75% of the patients need assistance with walking.
Primary Progressive MS is unique for the following reasons:
* Relapsing/Remitting incidence - The identifying characteristic of Primary Progressive MS is no period of Relapsing/Remitting preceding the progression. When the gradual increase follows a period of Relapsing/Remitting, the diagnosis is Secondary Progressive. When a gradual increase in loss of function is identified as possible MS, the patient is urged to think of anything in the previous twenty years that could possibly be a symptom that just went away. Even one incident can count as a relapse followed by remittance, so the current progression can be labeled Secondary Progressive. If there is no relapse and remittance period, the diagnosis is PPMS.