Speech Difficulty (dysarthria) - Autoimmune Cerebellar Ataxia

Hi Vball91, I am not a medical professional. I have the illness called CLIPPERS - Chronic Lymphocytic Inflammation with Pontine Perivascular Enhancement Responsive to Steroids. It is a very rare disease with less than 1000 people in the US having it. Very few neurologists know about it. As the name indicates, there is inflammation in the pons area of the brain. The positive is that the illness responds to steroids/cortisone.

The symptoms vary from person to person, but are mainly "gait ataxia, dysarthria, diplopia and/or altered facial sensation". It sounds to me as if your symptoms may be "dysarthria" (Oxford dictionary: "difficult or unclear articulation of speech that is otherwise linguistically normal").

Have you had an MRI scan? My neurologist showed me this article by Dudesk, from which I quoted the above symptoms (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3927899/).

I have a light form of CLIPPERS with only diplopia (double vision) as symptom. My diplopia started in June 2020, but the ophthalmologist had no idea what it was and I was referred to a neurologist only in March 2021. I was diagnosed with MS. I received cortisone treatment, with no effect - it was too late - resulting in some permanent eye damage at distances of 5 meters+ (cannot drive without special glasses, but very happy that I can drive again). I had a relapse in August 2021 , received cortisone and my eyes recovered to the status before this relapse.

I had a relapse in January 2023 again, got cortisone in Feb 2023, eyes improved. My CLIPPERS diagnosis came in April this year by my new neurologist, one of the few who knows CLIPPERS. When he looked at my scans, the lesions (seen on the first MRI scan) were gone on my September 2021 and September 2022 scans, indicating that I was then in remission, so at least the cortisone in August 2021 worked! I am on a low dose of Methotrexate (10mg per week) to hopefully prevent another relapse. (No long-term cortisone due to the many negative side effects.)

I don't know whether this will be of any help. Please see the discussions on CLIPPERS itself, as the symptoms vary so much. https://connect.mayoclinic.org/discussion/clipperslooking-to-connect-with-others/

I have many other article references. Send me a private message if you want them, then I can mail them to you.
Kind regards.
Ria

Thanks, Ria. This is very helpful. I will look into CLIPPERS. I was convinced I had MS when I first started having symptoms.

Hello, I am a speech language pathologist and treat individuals with dysarthria and apraxia among other things. We have specific areas of our brain that control speech and language. With brain damage our cranial nerves can also be impacted which impact our ability to use our lips, tongue, cheeks etc to form speech sounds. There are dysarthria and ataxia have different root causes. Apraxia impacts your motor control so you would typically see inconsistent speech sound errors often vowels. With apraxia we see people groping which means the mouth is essentially trying to figure out the correct movement to make the intended sound. In dysarthria the reason it sounds like slurring is because the muscles aren't strong or coordinate enough to make the intended speech sounds precisely enough. I have worked with many individuals who were completely mobile but only 25% intelligible and often people mistake the person for being drunk or under the influence of something. Apraxia of speech and dysarthria can be confused with each other but because the root cause is different it impacts the therapy/treatment you would receive. If you have not been referred to a speech language pathologist yet I highly recommend asking you provider for a referral. The therapy is typically covered by insurance or Medicare.
I recommend going the the American Speech and Hearing Website (ASHA) and there are many recourses if you search for dysarthria or apraxia.
The good news is dysarthria and apraxia is speech therapy can be very effective if you are determined. You will learn techniques and strategies that you can use to improve the clarity of your speech,

Very informative!

I was diagnosed with a spasmodic dysphonia some 15 years ago. For 9 years I had Botox injected into my vocal cords which allowed me to speak normally for about 5 months. After a failed injection after which I choked on my saliva dor 6 weeks Dr and I agreed no more injections. In the years since my voice has become more weak and unintelligible especially since being diagnosed with PMR in Dec 2020. Is there a connection with autoimmune diseases and my voice difficulty. I cannot be understood on the telephone even by my husband. Most people think I am mentally difficent.

Your experience is not uncommon for individuals with spasmodic dysphonia. While Botox can be a very effective treatment there is also a lot of room for error because the area around our vocal folds is also responsible for keeping things out of our airway. That must have been a scary experience to go through choking on your saliva. Spasmodic dysphonia is a dysfunction of the vocal folds so they don't close together while speaking causing too much air to escape through the vocal folds when phonating. There certainly are autoimmune disorders that can cause voice disorders and other speech and language impairments. There are a few things that can lead to SD to the nervous system causing tremors in the body, dystonia a brain disorder that causes muscles to be very tight and in more rare cases prolonged severely prolonged exposure to stress. SD can certainly be connected to autoimmune disorders depending on the symptoms.
It's unfortunate that people equate speech ability with cognitive function. This is very common for individuals with variety of speech and language impairments. I highly recommend seeing a speech language pathologist if you haven't already done so recently. You can get a referral from you ENT. There are some fabulous clinics around the US that specialize in voice disorders which I highly recommend. While SD is not curable it is possible to learn techniques and strategies that can improve communication.

I have IBM,a muscular disorder, that has given me a swallowing problem and speech challenges. I work with a Speech Therapist.

The saliva buildup can be, and is, troublesome. I take a medication to dry my mouth.

I live in Barcelona, Spain.

abuela4

IBM is an autoimmune disease and is classified as a rare disease.
abuela4

Thank you for your thoughtful informative reply to me. I have had multiple ENTs tell me speech pathology therapy would not help me. I have a friend who can only speak with difficulty in a whisper. She has been to speech therapy with multiple pathologists for several years. None of it helped one but. She has seen a dozen doctors and no one can explain the cause of her voice deficiency which she awoke with overnight one night. Perhaps she too has auto immune cause. Her father had PMR.

I sound slow, but my brain works fast. It’s very frustrating. I went to a speech language pathologist for a few months.
I kind of graduated, meaning there’s no more they can do for me. Maybe it’s time to go back.