Here is My Question:
I was on the Cleveland Clinic website since I will be going there later this month (the Mellen Center). My problems have been cognitive and I had a small relapse few short months ago and noticed memory, ear noises and a strange smell, plus other cognitive issues gotten a little worse. I noticed on their site that Interferon beta-1a (Avonex) and Interferon beta-1b (Betaseron) supposedly help or at least "slow" the cognitive problems getting worse? I was on Rebif initially but had to stop because of my liver. Does that mean I cannot take an interferon at all? At least, that's what I was told. I'm concerned about the cognition problems getting worse. They are very difficult to deal with sometimes. I'm really hoping the Mellen Center can help me with that! Also, I was given Aricept but quit taking it (I can't even remember why I did!) I looked it up thinking maybe I should try that again and there were so many side effects! Am I being silly worrying about those? I have almost burned our house down more than once. I'm constantly losing things, etc, and I get things so confused (dates, etc). I could go on and on but won't bore you with all that. I mainly want to know about the interferons (I am presently on Copaxone which my neurologist is very happy with) and Aricept. Do you think Aricept could help? It was in 2012 when I was diagnosed that I was given this medicine. I think I was overwhelmed at the time and decided I didn't need it. Perhaps I was wrong.
While we cannot make specific recommendations we can comment in general about the issues of cognition and MS. Cognitive changes are unfortunately common in MS and can present in very subtle ways. There can be responders and non-responders to any disease modifying therapy. We hope that any medication used to suppress MS would stop progression of symptoms, including cognition, but each patient should be monitored individually. While medications like Aricept can be tried, it is routine to obtain formal neuropsychological evaluations and look for co-morbid issues that could effect cognition and be reversible. For example, patients with interrupted sleep can have significant cognitive difficulties. Sometimes, cognitive changes are side effects of medications. All of these issues should be taken into account by patients, neurologists and neuropsychologists.
Benjamin M. Greenberg, MD, MHS
Director, Transverse Myelitis, Neuromyelitis Optica and Pediatric Demyelinating Disease Programs
Director, Neurosciences Clinical Research Center
UT Southwestern Medical Center
In regard to your symptoms, here are a few blogs you might want to read:
Here is My Question:
My question is this: After many tests (Alzheimer's and dementia), the neurologist has said that MS is the cause of memory problems for a 63 year old man. Many say there's no way to really diagnose the difference of whether the memory loss is due to the MS or other causes, even with doing a spinal fluid. The reason I ask this question is because when he answers questions, he answers like it is two years ago... is there way to tell if MS is really causing his memory loss? Thank you.
The pattern of cognitive disturbance in MS does differ from other disease states such as Alzheimer and other dementias. As our age advances, it can be more difficult to tease them apart. The best way of doing so is to undergo neuropsychological testing. This is a comprehensive series of tests (usually paper/pencil but can also include computer tasks) that is administered in a controlled environment and interpreted by a neuropsychologist. These tests can last hours, and occasionally can be split up into consecutive days in order to minimize the effect of fatigue on the results. The neuropsychologist will compare the test-takers performance to those of similar age and background to ultimately come to an informed/educated conclusion regarding the cause of the cognitive dysfunction. These results can also help to craft a rehabilitative program (ie, for memory) that can be used to help the patient leverage their cognitive strengths to help compensate for any weaknesses. I'd recommend speaking with the neurologist about this, if not already done.
A. Scott Nielsen MD MMSc
Virginia Mason Multiple Sclerosis Center
What are cognitive deficits?
I am going to make a confession. I have a pet peeve. My pet peeve is how often the words “Cognitive Deficits” are thrown around when talking about (and to) pwMS. When my patients first come to me, none of them can really explain to me what the phrase “Cognitive Deficits” means. All they know is that it is used a lot in connection with a diagnosis of MS, and that they know it has something to do with how they think. And that it’s a little scary.
This is how I clarify it.
Cognition has to do with our ability to think. And cognition has parts. Some of these are attention, memory, problem solving, reasoning, planning and organization. Because all of you with MS are so unique, you really can’t throw the blanket phrase “cognitive deficits” on everyone. Some individuals have increased difficulty paying attention, some have problems figuring out the steps needed to complete a task and some can’t remember where they need to be tomorrow. Some individuals can do all of this, but it takes twice as long.
That is the role of the therapist, to tease out how the changes in the ability of the pwMS to think, is having an impact on their daily lives. Does that increased difficulty paying attention mean that the pwMS is not able to get all the information needed from meetings at work? Does the increased difficulty figuring out the steps needed to complete a task mean that housework is not being completed or the dishes are always piled up to the ceiling? Is the pwMS forgetting where they are going as they drive down the road?
The link below goes into more detail…
Cognition can be evaluated by several different professions. Neuropsychologists will provide the most comprehensive analysis of attention, memory etc. Speech Language Pathologists and Occupational Therapists can do simpler cognitive or cognitive- linguistic evaluations, and then set functional goals with the patient’s input and treat the deficits. Psychologists, social workers and counselors can also administer tools to assess what “part” of cognition may be having a negative impact on daily function.
These changes can happen early in the MS disease process, so if you feel you are thinking differently, ask for a referral to be evaluated by one of the professions mentioned above.
Lori Ann Kostich M.S. CCC-SLP
Mandell Center for Treatment and Research
#cognition #cognitivedeficits #multiple sclerosis #MS
Lori Ann Kostich M.S. CCC-SLP
Mandell Center for Multiple Sclerosis Treatment and Research
“I want to get back to the way I was.” As a Speech Language Pathologist who works with persons with Multiple Sclerosis (pwMS) I hear this often. PwMS are referred to me by our Neurologist and Neuropsychologist because they report, or demonstrate changes in cognitive –communication or cognitive-linguistic status, and the medical staff believe the pwMS will benefit from a course of therapy. The response I am compelled to give to that initial statement, is, based on the current treatments available, there is no turning back time. The changes in the brain are happening, and they are what they are. The ability to process information slows, and the ability to learn new information (how I think of short term memory) becomes more difficult.
But, having said that, therapy from a Speech Language Pathologist, Occupational Therapist, Social Worker, or Psychologist, can be very effective in helping a pwMS manage the changes in cognitive function. Therapists have training and experience helping pwMS develop new routines, change personal habits, make workflow adjustments at the pwMS’ place of employment, and help family members understand the changes the pwMS is experiencing. As part of my practice, I spend a great deal of time doing working on attention and training strategies such as visualization, to help with managing new information. The most important part of each therapy session is asking the pwMS that I am working with how they are going to APPLY what was trained in the therapy session to their daily routines. Therapy addressing cognitive functioning is not like blood pressure medication where you take it and you get better. The onus is really on the pwMS to take the training and strategies home (or to work) and practice them and “tweak” them until whatever issue is better. The most successful outcomes I have had have been when the pwMS worked just as hard outside the therapy setting as they did when sitting across the table from me.
Commenting on medications that some of my patient’s claim makes them think better, is out of my scope of practice. So I am not going to. But, please keep in mind that the effects of any medication last only as long as the medication is in a person’s system. In my opinion, it is better to participate in a course of therapy to learn how to manage the cognitive-communication/cognitive-linguistic symptoms for the long term (if you teach a man to fish…).
If you are noticing changes in your ability to pay attention, remember new information, or a decrease in your ability to stay organized tell your neurologist, especially if this is affecting your ability to work. A referral can be made to a Neuropsychologist, Speech Language Pathologist, Social Worker etc. Ask for the help. This type of therapy will not make the lesions go away, but it can give you some control over the cognitive changes that are happening.
PLEASE NOTE: The information/opinions on this site should be used as an information resource only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.