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Signs It Could Be More Than Parkinson’s Disease

Signs It Could Be More Than Parkinson’s Disease

Close to one million people in the US have a diagnosis of Parkinson’s disease (PD). Unfortunately, for a small percentage of these people the diagnosis just doesn’t seem right. They feel like something more is wrong. Their medicines may not be very effective. They might have severe dizziness and even be prone to fainting. They just sense the disease is progressing faster than expected.

So, what is it? Is it Parkinson’s disease or is it something else?

The answer is not easy, but many who feel they have more than Parkinson’s may in fact have multiple system atrophy (MSA). MSA is a very rare disorder that has similarities and features of Parkinsonism. However, it is so rare that many physicians are unfamiliar with it and so the diagnosis is not considered. As a result, a likely diagnosis of MSA might be delayed by years and even missed all together. What’s more, due to many symptoms that could possibly be attributed to other conditions diagnosing MSA can be challenging, even to the most experienced doctors. This can be very frustrating to those who know it is more than PD.

Signs It Might Be Multiple System Atrophy Instead of Parkinson’s Disease?

Here are some clues as to whether it is multiple system atrophy or Parkinson’s disease. One of the easier distinctions is between PD and MSA-C (the cerebellar type). If the patient presents with unsteadiness while walking, uncoordinated arms and legs, bladder disturbance and/or dizziness when standing the diagnosis is more likely to be MSA-C. On the other hand, if a person looks Parkinsonian the distinction can be harder, but there are clues:

  • In the earlier stages of MSA-P (Parkinsonian type), which is often when people have just been told they have Parkinson’s disease, some patients will fall often. Frequent falls also occur in Parkinson’s disease, but it typically occurs 10-15 years after diagnosis.
  • In patients with MSA the classic Parkinson’s drug L-Dopa may work initially but will stop working very quickly. It can continue working in PD patients for many years.
  • Dementia is not associated with MSA however, it does occur in patients with lewy body Parkinson’s disease.
  • Early autonomic nervous system symptoms such as low blood pressure when standing (neurogenic orthostatic hypotension) and issues with the bladder are often signs of possible MSA in patient’s diagnosed with Parkinson’s.
  • Vocal cord issues are less common but very typical in MSA and much less common in PD. Some examples include difficulty getting words out, odd sighs and even falling asleep during a conversation.

The above are clues, so if you suspect something more is wrong than Parkinson’s it is important to visit movement disorder or autonomic nervous system specialist for further evaluation and testing,

Knowing that it is MSA and not Parkinson’s is Important!

Over the years MSA Coalition Board Members have heard the frustration about a slow diagnosis after the initial diagnosis of Parkinson’s. While MSA is fatal, knowing the correct diagnosis, is still important.

Multiple system atrophy affects “multiple systems” in the body. As a result, while there are not MSA specific treatments, treating the various symptoms from sleep disorders, urinary and bowel issues, blood pressure control, etc. can vastly improve quality of life. The earlier an MSA patient is diagnosed, the earlier doctors can establish a plan of action to improve symptoms that can be very disabling. Another factor is that Parkinson’s medications typically stop working in MSA patients.

An early diagnosis also allows patients and their families to spend quality time together while they are still able. It also provides time to prepare for end-of-life issues, such as preparing wills and living wills.

Research To Find MSA Biomarkers and an Earlier MSA Diagnosis

An important goal of the Coalition’s MSA Research Program is to fund and encourage the development of biomarkers to distinguish PD from MSA at a much earlier stage. The stakes are high. An accurate biomarker could lead to quicker development of treatments. In fact, a concern in past clinical trials of MSA treatments that failed is that maybe the patients in the trial are too late stage to show effectiveness. Increasing the number of known early stage MSA patients could improve the likelihood of finding treatments and even a cure.

MSA is like the three flavoured Neapolitan ice cream

MSA is like the three flavoured Neapolitan ice cream

What is MSA? An Analogy of Neapolitan Ice Cream Can Help Explain

Written by Pam Bower, a volunteer and member of the MSA Coalition Board of Directors.

I first thought of this analogy many years ago to describe Multiple System Atrophy, I’ve modified it a little bit: MSA is like the three flavoured Neapolitan ice cream. Everyone with MSA gets a scoop of the MSA ice cream just as everyone at a birthday party gets a scoop of Neapolitan ice cream in their dish. If you were at the party and looked at your dish and at the dish of the person next to you you would notice that there is not the exact same amount of vanilla, chocolate and strawberry in both of the dishes.

In someone with Multiple System Atrophy, if their symptoms are mainly CEREBELLAR like ataxia (loss of balance), slurred speech or difficulty swallowing they have mostly vanilla ice cream in their dish .

If their symptoms are mainly PARKINSONISM like tremors and slowness of movement they have mostly chocolate ice cream in their dish.

If their symptoms are mainly AUTONOMIC like orthostatic hypotension (low blood pressure when standing) or urinary incontinence or urinary retention or sexual dysfunction they have mostly strawberry ice cream in their dish.

Everyone needs to have some strawberry symptoms to be diagnosed with MSA. On top of this they need to have some vanilla and some chocolate symptoms too. Note that they may have a whole lot of vanilla and a tiny bit of chocolate. If so they are called MSA-C (cerebellar). If they have a whole lot of chocolate and a tiny bit of vanilla they are called MSA-P (parkinsonism).

People with MSA have a changing bowl of ice cream though … their vanilla and chocolate and strawberry amounts increase over time as they develop more symptoms from the cerebellar or the parkinsons or the autonomic sides. … but this will vary from person to person. This is because the disease is spreading throughout the brain. It does not spread exactly the same way in every person.

I hope this helps you understand Multiple System Atrophy a bit better.

P.S.

Subscribe to the Multiple System Atrophy Coalition’s YouTube channel to view educational videos.

Download the 50+ page document “MSA What You Need to Know” from the Multiple System Atrophy Coalition website.

To find support and educational resources check out the MSA Resources page.

Remember: March is Multiple System Atrophy Awareness month and October 3rd is World MSA Day.

To purchase Multiple System Atrophy t-shirts, hats, awareness bracelets, videos, educational booklets, DVDs and other items please click SHOP FOR MSA GEAR at www.multiplesystematrophy.org