Why Is PPMS Hard to Diagnose?

While relapsing-remitting MS (RRMS) causes acuate neurological episodes which can last for hours, days or months, primary progressive MS (PPMS) is more gradual. Symptoms continually worsen over time and can be mistaken for getting older, which was my case. Those with PPMS tend to have fewer brain lesions than those with relapsing forms of MS and more spinal lesions.1,2

What tests are used to diagnose PPMS?

Diagnosing any form of MS is challenging since other neurological diseases such as Lupus, Lyme Disease, Parkinson's have similar symptoms. To rule out these diseases there are various tests such as a blood draw, ultrasound, PET scan, SPECT scan as well as imaging (MRI).1,2

A typical diagnostic approach for MS will include a magnetic resonance imagining (MRI) to determine if you have lesions within your brain and along your spine. Other approaches used are a spinal tap which draws cerebrospinal fluid to be analyzed, nerve function test (NCV), and eye optic nerve review.1,2

Once you have an MS diagnosis, it may take up to a year of observation to determine if you have PPMS. You and your neurologist will determine if you have consistent progression. Other areas that help to determine the type of MS include lesions on your spinal cord, spinal fluid evidence of oligoclonal bands, and elevated IgG index.1,2

My personal journey to an MS diagnosis

My journey began in the mid-’80s. I ignored my physical changes and felt I was just getting older. In 2004 I had trouble walking next to someone, turning my head to talk without losing my balance. I also had trouble walking a few blocks before becoming dizzy and lightheaded.

Ruling out other health conditions

Finally, I decided to visit my family doctor to discuss the issues I was experiencing. Because I have other health issues, we agreed to address these issues as well. My first stop was to see my cardiologist to determine if my AFib was causing blood oxygen level issues resulting in dizziness. After a few tests and wearing a heart monitor, this was ruled out.

The next stop was visiting an Ear Nose and Throat Specialist (ENT). After several tests, it appeared I had lost some hearing in my left ear which could cause loss of balance. The hearing loss resulted in physical therapy with little change. My next stop was visiting an Ophthalmologist who determined I had Uthoff’s and at some point had optic neuritis. Both of which are signs of MS.

Confirmation of PPMS

After several years I began seeing a neurologist who ordered MRIs, nerve tests for my feet and lower legs. The final test was a spinal tap, which indicated MS could be the issue. After a visit to the Colorado University MS center, an additional MRI, and a medical record review, I was diagnosed with MS. A two-year observation indicated I had PPMS.

A funny side of MS

OK, I can’t begin to tell you how many times I have heard “be careful" or "pay attention" and I know you have as well. Having our best friend, MS, follow us everywhere, we can count on running into something. It’s funny to me anyway when I run into a wall and hear “be careful”. My response is always “I was right up to the point I hit the wall” with a smile and a look of 'hello this is normal'!

In my next article, I will take a look at current treatments and treatment trials. I thank you again and look forward to reading your thoughts and hearing about future topics of interest. Always stay positive, look at the brighter side of life, and pass on an act of kindness. You might just change someone's day!

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