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.
I am a perfect example of the MSA-P description above. Had all of the signs of MSA before I was properly diagnosed.
Hi Jeninne
What medicine your doctor prescribed ?
I have been diagnosed with Parkinson’s based on the results of a DaTscan, even though before the test I was told it was not PD, but Atypical parkinsonism, likely MSA. My symptoms fit the symptoms of MSA, but it seems to have been missed. It takes everything I have to stay awake, bladder issues, Noh, difficulty walking, even with a walker, blurred vision.
I just turned 50. Was diagnosed with Parkinson’s about 4 years ago. But it is progressing way too fast. My neurologist is now thinking it is MSA. We went down the checklist and I hit each symptom 100%. Every other disease and disorder has been ruled out. Have been to 4 neurologists now. I am getting worse and PD meds are almost no longer working. Falls are becoming more frequent, speech therapist put me on a softer food diet, uncontrollable gasps of air, and extreme dizziness when getting up, almost passing out, along with other MSA symptoms. Any more info would help. Thank you.
Hi Brad,
Sorry to hear about your worsening symptoms. Please check out our resources page. https://www.multiplesystematrophy.org/msa-resources/ If you would like to connect with others going through similar symptoms we encourage that you join one of our online forums or call our support line. 866-737-5999
God bless you brother, i was diagnosed at 55 and it ended my life i used to custom cars and motorcycles now i cant even change a light bulb, i have the MSA 100%.
My husband has had Parkinson’s for at least 16 years & now has also been diagnosed with MSA. He passes out cold on standing or even moving to seated position & sometimes has movements like a seizure & then breathes very heavily.
Hi Carolyn,
Please see our MSA Evaluation and Treatment Guide which can be viewed or downloaded from our website.
https://www.multiplesystematrophy.org/about-msa/
You will want to read the sections on treating neurogenic orthostatic hypotension.
See our resources page for other helpful information.
https://www.multiplesystematrophy.org/msa-resources/
my brother, age 68 was diagnosed witih Parkinsons years ago – had the brain surgery, did better, but now, not doing well with NOA. Won’t take the medication Fluutocortisone, as it makes him dizzy and light-headed. But still passes out upon standing, or other times. Thinking of Mayo Clinic for treatment? Or Cleveland Clinic. Any suggestions?
Hi Bonnie,
You are welcome to call the MSA Coalition support line and speak to experienced MSA caregivers. 866-737-5999 Leave a message with a good time to call you back.
My husband was diagnosed with MSA in Mar. He has had several symptoms for a number or years which we attributed to aging, coincidence, etc. He has low b.p., frequent falls, unsteady and shuffling gait, urinary and bowel issues and many more issues. He isn’t able to exercise or even care for his personal care needs. I am very concerned about how to handle his care. He is 81 and is getting more and more weak. I believe he is in the late stages of MSA and am wondering how long he may have and how best to handle the issues to come?
Hi Gail,
It may be appropriate to bring up the subject of hospice with your doctor. Please see our recent blog post on this topic.
https://www.multiplesystematrophy.org/blog/my-positive-experience-with-hospice-care/
You are welcome to call our support line for assistance from experienced caregivers. 866-737-5999
Any advice on Ataxia treatments?
82 and just diagnosed.
Here is our educational page on ataxia treatments in MSA. For all treatments we strongly recommend speaking to your medical team. https://www.multiplesystematrophy.org/about-msa/msa-c/
was just diagnosis
where to get tested for MSA
My sister has all the symptoms of this. Years and years of different symptoms treated separately. Now very bad .passes out all the time and hits the floor, lack of bladder control. Loose bowels for years, low blood pressure and falling upon standing or sitting, now vomiting all morning.calling paramedics every other day, severe dizziness. At first they said vertigo but no spinning. Her doctors just put her on levodopa but she does not have Parkinson’s symptoms. She lives alone and we don’t know where to go to get her properly diagnosed. Lives in southern Michigan. I’m thinking Cleveland Clinic. She only has my other sister who lives 45 minutes away and I live in Kansas. She can’t find her words and now says she needs to go to the eye dr. Has to cancel drs. Appts due to dizziness and falling. She also has epilepsy
Hi Celeste,
Sorry to hear your sister has troubling symptoms. My suggestion is to find a movement disorder specialist neurologist. You can search this page. https://mds.movementdisorders.org/directory University of Michigan in Ann Arbor might be an option.
Good luck,
Pam
had two MRI’s and PET scan. Both point to MSA but do not have the signs. Unsure what to do.
My husband is 70 yo and his symptom began 9 years ago..dizzy, slower etc. He had a Datscan which showed something in the Parkinsonism family and the Dr. suspected MSA due to the atypical symptoms, but went with the Parkinson’s Diagnosis because the meds worked some. One year ago he got worse and with more testing was diagnosed with MSA.
I am interested in a support group for caregivers and am wondering if MSA affects his taste buds. One time he may like something, then the next not.
I am 64 yo, own my own business as a Marriage and Family Therapist and am thankful for your site!
Are Parkinsons & MSA hereditary? Are they considered auto-immune? My sister has been diagnosed with Parkinsons but it seems more like MSA. I have a few mild symptoms so need this information.
Hi Adelle,
Multiple system atrophy is not a auto-immune disease. It also is not generally an inherited disease though there are some extremely rare hereditary cases in people of Japanese ancestry. There are some rare forms of Parkinson’s that are hereditary. Genetic testing is available for the hereditary forms of Parkinson’s.
Best regards,
Pam
Could root canaled tooth done years ago cause neurodegenerative disease years later. Apparently studies done in the past have raised this question and some dentist still raise this question. I have found numerous articles about this especially after the movie documentary RootCause was pulled from Netflix because dental associations were upset with this speculation although they offered no studies to disapprove it.
My husband is 68 and was diagnosed as having essential tremor about 5 yrs ago. Then about 2/3 yrs ago, he started having falls, then BP falling episodes when he stood up and fainted. Then he was diagnosed as possible PD and started on Levadopa – after a five or so months he had to come off of it because not only did it not work well it also made him have very unpleasant side-effects. The Neuro just said well he’s ‘parkinsonian’ and not much more. We have insisted on an MRI, which won’t take place before Jan /21. In the meantime, the tremors (arms, hands, neck and head) have become quite severe – even violent at times. When we read about MSA-C, it sounds just like him but we are wondering if tremors are typically a part of it and do they get worse as the disease progresses? Any help or advice is greatly appreciated.
Cheers,
Maddie
I am a professional trumpet player and have recently developed symptoms which i have been told are not Parkinsons. Still concerned about embouchure tremulo which now is
making playing impossible. Any suggestions on medications or treatment?
Hi Charles,
You are welcome to call the MSA Coalition support line and speak to experienced MSA caregivers. 866-737-5999 Leave a message with a good time to call you back.
My husband is 55 and diagnosed with PAF within the last year. His doctors relate he has probably had PAF for at least 5 years and it was misdiagnosed. He seems to be progressing rapidly and we feel this may be something more as in MSA. We understand the PAF could possibility ramp into Parkinsons or MSA.. Does anyone know if the PAF morphs into Parkinsons then MSA or can it skip Parkinsons?
Thanks for any help
My husband has recently been diagnosed with Parkinson’s disease. His very first symptom came in 1993 having terrible upper back pain. He also developed frequent urination. Then after he had some major surgery, he began to develop Hypotension, a tremor in his left thumb, same side as the back pain, and now his whole hand has a tremor. He had a slight tremor in his left foot. He since July, has developed heat intolerance. He goes back to neurologist in 6 months. They said time will tell if it’s MSA or not. It would seem to me that it is MSA because of the non motor symptoms that have developed. I wish I could have an assurance of what it is. MRI will be scheduled sometime in the future. We are waiting on the scheduling.
have a great deal of problems with my circulation in my legs. Developed a clot in my right leg had an operation A yr & A half ago and it seems like I just have more pain. The circulation is good but poor pulse reading in the left leg which was always bad. Had my veins stripped when I was 25 am 85 in March. My daughter who has Parkinson’s for the past 9 yrs thought I should read up on MSA. Of course when comparing I can relate to some things as severe pain in my legs & ankles. Which my Hemotologist said could due to my blood condition. My body was not making any red blood cells as a result I was having the above problems with my legs. My heart was not able to pump enough blood to my legs. I’ve had about 5 Blood Transfusions and for two yrs had to have infusions for two yrs about every 2 months. There is no known underlying cause for the anemia I have been fine fir the past Yr & a half not needing any infusion except for I & A half yrs ago when I had myleg operation I was bleeding internally in my left leg had to go back to the hospital had a blood transfusion and stayed there fora week. Cane home and really haven’t felt 100% since. Have been going to my Hemotologist and & the vascular man. I did go to a neurologist. Any suggestions or advice would be great fully appreciated. PS. This Pandemic is of no help I did get my 1st vaccine shot 3days ago no reaction.
Hi Carole, Sorry to hear about your issues. If you would like to connect with others going through similar symptoms we encourage that you join one of our online forums or call our support line. 866-737-5999
We have a facebook group for MSA patients at this link: https://www.facebook.com/groups/msapatients
Also be sure to check out our resources page. https://www.multiplesystematrophy.org/msa-resources/
Why hasn’t a cure been found for msa. It takes your life away.
Hi Tom,
Yes it is very frustrating to see that there is not yet an effective treatment for MSA. Sadly, most other neurodegenerative diseases like Alzheimer’s and ALS also have no cure. The brain is a very mysterious and complex organ but the good news is that there are researchers who are determined to keep studying it. Recently a virtual meeting “The 7th International MSA Congress” was held where scientists shared their latest findings. The MSA Coalition continues to support conferences like this as well as research grants. We also encourage collaboration among labs around the world. We must not give up.
I was first told I have Parkinson’s but the meds have not helped. I went to my neurologist yesterday and was told it’s MSA. I’m simply lost. I’m 50 years old and have been struggling for a diagnosis for a year. Has this happened to anyone else?
Hi Cathey,
Sorry to hear you have received this news. It’s very common to first be diagnosed with Parkinson’s and then get the news that it’s more than Parkinsons. I encourage you to call the MSA Coalition support hotline 866-737-5999 for a listening ear from someone who truly understands.
If you would like to join our facebook support group for patients you can request to join at this link: https://www.facebook.com/groups/MSAPatients
Best regards,
Pam
Don’t know where to begin except that I started to complain about body changes when I was 8, (I’m now 58). Most likely I had pediatric multiple sclerosis. Hearing and vision problems with the left eye, more than likely optic neuritis. Pediatric and adult doctors were useless, I’ve seen quite a few throughout my life’s journey of complaining something is wrong.
I am self diagnosed two years ago with MS after thousands of hours research of symptoms.
Now I’m self treating and my body accelerated it’s decline which is how I found MSA. Overnight I lost my ability to go to the bathroom and other symptoms coincide but aren’t a perfect fit to MSA, at the moment. I thought I would share with you one of the bright spots treating MS that also has helped me regain control of my bodily functions… Whole Body Vibration plate. Research comes from the Australian and New Zealand MS societies. I did a thorough study to find a company that manufactures a product that lives up to it’s statistical claims AND is somewhat affordable. Hyper-vibe. I don’t make a cent recommending them. For every 10 minutes standing on it equals an hours worth of exercise. I hope this helps some of you, G*d Bless…
I might also add that, at my recommendation, for a bedridden MS patient at one of my doctors offices use an aerobic massager. So far, she’s improving strength tremendously. The unit increases core strength while you lie there reading or watching a screen. Found on amazon approximately $150.
@Bill C, could an aerobic massager also be termed as the chi machines where you put your legs/ankles in the curved plate laying on your back? I have one…yay! And a vibration plate that isn’t the best brand but what a blessing to see your suggestion! They’re in storage due to moving from my tiny house I forgot about them over the years. You are planted by the Lord to help 4 family members!
Diagnosed with PD ten years ago. L-Dopa helps with tremors but other symptoms continue to get worse.
The symptoms are hypotension, blurry vision, fatigue, narcolepsy, sleep apnea, syncope, headaches, shortness of breath. I also have a pituitary adenoma, a meningioma, an adrenal adenoma, diaphragmatic eventration. And a spot on my lungs.
My physicians are not concerned about most of these conditions. Should I bring up MSA with my healthcare providers?
I’d never even heard of MSA before reading this article. It’s good to know the subtle differences to help determine if a Parkinson’s diagnosis is in fact accurate. There are some additional early warning signs that are lesser known than the typical tremors and rigidity, as explained in this article: https://www.responsive-homecare.com/first-signs-of-parkinsons/
I was 38 and started having tightness in muscles constantly and extreme cramping, even to the point where I could barely walk and had to borrow a walker to go to a dr appointment. The dr told me to go to the emergency room so they would admit me. After 5 days of testing they concluded, lose weight and you might want to see a psychiatrist. Nothing found at all and not from lack of testing. Now at age 49 I was at another neurologist and hearing the same thing. Got to do these tests. I asked in a rough barely heard voice, is there a test for PD? He said you don’t have PD because I do not see any tremors but there are things that could be PD. He also said I was to young, uhm ever hear of MJ Fox? I asked if he was a movement specialist, no we do not even have one on staff but if you want to hear a dr tell you that you do not have PD I’d go see dr…….. well I looked at my wife and she knew what we should do. Called and got an appointment. He wanted to run a blood test and a skin biopsy. He called after I had them done and said well blood was ok but the biopsy points to PD. Because of A (forgive me I can’t spell it) protien. Next he sent me for a DATscan. He said there was something definitely going on and explained about dopamine. Got meds and did ok but 4 months in It was not working anymore. Kept adjusting but still not working and in fact felt much worse. Well my wife and I would message him often about this or that but to us nothing seemed to be much of anything but he insisted tell every little thing. Seen my pcp dr and he noticed I was not myself. In fact he talked to a long time I was told. He called my wife and told her I was ok but he wasn’t letting me leave until I had a ride. My wife and a friend came to get me, he said I had no clue about time date president or many questions. He had me sit and stand many times over a period and he said my BP dropped dramatically standing up. He already called my PD dr, he told my wife that my PD dr wanted us in his office 1st thing in morning. Well long story short, MSA after many tests. We were already talking about a wheelchair for PD as I went down hill fast. But he did say him and his assc I see together had a feeling and was going to discuss next visit. I was going in every other week as I was rapidly declining in abilities. Sent for mri today. Now I wait till tomorrow or day next. They both feel MSA but how is it after 12 yrs I had issues of rigidity cramping and walking like a drunk yet still was not using any device except that one time at the start? They said it seems like PD but I went from cane to walker and in 11 months I am using a wheelchair. They really say the rapid decline was extraordinary as the fact of 12 years into first onset that was noticed. They had me take a cognition test a few months ago. Results were moderate to almost severe. The profile is compared with lewy body dementia. Almost an over lap graph of what the test says my results were closest to. I didn’t know that they could even compare Lewy body as that is found post mortem. So that also being a concern, all I can say right now is I AM SCARED. I have no clue nor do I really understand all this happening so fast my mind can not grasp it all.
Thank you for allowing me to share a bit of what I’ve been going through.