Ask Polly

Have you ever been frustrated by your ability to focus and concentrate, or by emotional turmoil, and wondered who to talk to about it? Do you suspect a diagnosis of MS and are wondering who to ask about your symptoms? Are you a friend or relative of someone with MS trying to understand what this disease is and how it effects people?

This page is dedicated to answering your questions and assisting you in understanding more about MS and how it effects you and those you love.

Polly Sullivan is a consultant and a Mental Health Therapist who has worked for twenty years with older adults, individuals with disabilities and those with cognitive difficulties. Please remember that she is not medically trained, and can only refer you to a medical expert for specific medical information.

When you e-mail us with your questions, please indicate if you wish them to remain confidential. We will not post any e-mails so indicated on this page. Also, we change the names on your emails to maintain anonymity. Our email address is msakc@msakc.org

Hello my name is Amy and I am 18 years old and MS runs in my family. My aunt was diagnosed with it about a year ago I believe. Well my question is am I at risk? I woke up in the middle of the night Wednesday night and all of a sudden I was in pain all over my body and I felt like I was wearing earmuffs on my ears because I couldn’t hear very well. Maybe about 15 minutes later the pain went away and I fell asleep. Does this sound like I could possible be at risk for MS?

There is a genetic component to multiple sclerosis, but it is a relatively low percentage (see this article and chart for details: http://www.mult-sclerosis.org/research.html#genes). There are a large number of factors other than genetics that also seem to influence the initiation of MS, and the combination of those factors differs from one individual to the next.

You should certainly check with your doctor regarding the sudden bout of pain in your body. Whether or not it has anything to do with MS, it is still disturbing and ought to be investigated. You can ask your doctor about his/her thoughts on a potential for MS and see what they recommend. You can also keep a symptom diary, noting down any symptoms that are unusual, when they occured (dates/times), for how long, etc. A symptom diary or journal can help doctors to get a better idea of specific symptom history.

I hope this has answered some of your questions and given you a starting point to investigate.

Best thoughts and wishes,

I have been experiencing episodes of extreme fatigue, leg weakness, slurred speech, blurred vision, double vision, itching, tingling sensations. I also have cold purple, swollen toes which no one can come up with a diagnosis for (not Raynaud’s so they say). This started Last March the first episode, finally got better after a few months, joined a gym in the summer but the heat made me so tired.

Well in October I started slurring my words again and had vertigo and double vision, the first episode I only had the extreme weakness and fatigue. The neuro put me in the hospital again on steroids and other drugs and I eventually got better again. December this happened again only this time the purple toes came into play and pain in my legs with muscle spasms that the nurses could feel. I also experienced night time bladder loss and leakage.

Well anyway I have had all kinds of MRI's done with contrast, LP, VER's, EMGs etc and no one can come to any conclusion. I am going to a MS specialist on the 30th but would really like to know if I could still have MS without the lesions. I have heard that the lesions move and I also heard that sometimes the lesions don't show up for a few years. Is this true, can I be diagnosed without the lesions?? I just want to get better for my family.

P.S. I would like my email address published so others can email me with their experience.

I am so sorry to hear that you are having such a hard time getting a solid diagnosis for your symptoms. Certainly many of your symptoms could correspond with those of MS and yes, you can be diagnosed without evidence of lesions if other evidence of sufficient weight is discovered. Lesions sometimes may not appear on an MRI until years after the symptoms have started. Have a look at our article on Diagnosing MS and also our article that provides an overview of MS, Fibromyalgia and Lupus that also explains some of the diagnostic techniques used.

You are very smart to seek the opinion of an MS specialist. Try to have a written symptom history ready for them. (We have downloadable PDF symptom questionnaires.) The questionnaires can be of assistance in cataloguing and categorizing symptoms, especially if you have trouble remembering them all in the doctor’s office. Be sure to write down the duration of the symptoms, and when they started.

I know this has been a long, frustrating and painful struggle for you and your family. But I know that you have the strength within yourself to see this through, and to keep pushing until you get the answers that you need and deserve.

I have been diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. In my initial attempts to get a diagnosis, I had a MRI which showed brain lesions. My neurologist (who was not a MS specialist) did a spinal tap and it was fine. He did not diagnosis MS because of the mixed test results.

A year and a half later I had another MRI which revealed new lesions (according to the Radiologist). My Neurologist disagreed. Now I don't know what I have, or what I can do to figure this out.

I think I need an MS specialist but I don't know where to find one. Can you tell me how to search for one?

You are absolutely on the right track! You should see an MS specialist neurologist. The local office of the National MS Society should be able to give you recommendations on neurologists who specialize in MS. You can find your nearest office on their website (www.nmss.org). You can also check with the MS Consortium for their nearest center. You will find a listing of MS Consortium Members in the U.S. and Canada.

I am sorry that you have been frustrated in your efforts to get a solid diagnosis. We have recently written an article on MS Diagnosis which may be very interesting to you.

The article covers much of what we have discussed and why it can be so difficult to get a firm diagnosis. When you find an MS specialist neurologist, be sure to have a symptom history for them, as well as your previous MRIs. Be sure to take a spouse, significant other, relative or close friend with you to support you and to be a historian for you. I know that you have struggled with this and may even be losing faith in doctors, but with the right doctor I think your diagnosis quest will finally be resolved.

My cousin who is 21 has just been diagnosed with MS, we know nothing about it and as you can imagine it is very depressing. I have heard of a drug called Alpha interferon, but have no more information about it. She lives in Africa, a country where the health system is well behind and it is very difficult or impossible to buy these drugs. But before even thinking about which drug to take, and since she holds an American passport, I would like to know if there is a cure for it in America.

I understand that you are depressed at the news of a diagnosis of MS. However, today the news is better than ever before in history due to the development of treatments that can modify the course of the disease. The so called "ABCRN" drugs slow down the progression and reduce the number of attacks by about 30% in the research studies. The future results may be even better because, due to MRI testing, people are getting diagnosed earlier and thus can start treatment as soon as a definitive diagnosis is made. This is when the treatments are most effective. The drugs are available by prescription from a neurologist. The bad news is that there is still no cure for MS. Research is continuing all the time but for now these treatments are the best we can do.

There are several sites I would like to refer you to for information about MS and the various treatments to both slow down progression, and symptomatic treatments. One is our website and the other is the National MS Society website at www.nmss.org which has detailed information about all the drugs used for MS.

Let me include some other websites which you could check for the availability of these drugs in Africa. They all have programs for those who are "underinsured".

If the drugs are not available in Africa, since your cousin has a US passport it might be advisable to investigate options for moving to the US or Western Europe. Previous research has shown that 10 years after the first symptoms 50-80% of people with MS have to quit work due to disability. This is changing with the ABCRN drugs.

About 2 months ago, I was switched from the powder form of Avonex to the pre-fill. The side-effects are unbearable...chills, shakes, fever, muscle aches. This new pre-fill lays me out for 24 hours!

I had minimal side-effects with the powder form... muscle aches and fatigue. Never, never sick like this with the powder form. I basically took my shot, experienced some mild side-effects (muscle aches and mild fatigue) and went on with my life. This is not the case with this new pre-fill. I am so sick from this shot I don't even want to continue my therapy.

Have you heard similar comments from others that have been switched from Avonex powder to pre-fill. Also, can the powder form still be ordered?

Shaun

I am sorry to hear that you are having so many problems with the new formulation of Avonex. Because I am not a doctor, I cannot give medical advice, but I urge you to contact your neurologist and discuss these side effects with them and explore possible options. You should call the Avonex help line to inquire about the powdered form (1-800-456-2255) and let them know about these new side effects.

Make sure that both your neurologist and the Avonex people understand how serious this is for you. Talk with them as soon as possible and make sure that they resolve this to your satisfaction.

I was diagnosed in June ’94 with relapsing remitting MS. The doctor never labeled it because I’ve been “o.k.” since…minor vision problems from the optic neuritis and leg pains, fatigue, etc. Nothing serious and I know I’m blessed that way. My annual checkup with my neurologist was kind of frustrating because all he saw was how good I’m doing so when I asked about the pros of going on meds, he didn’t think it necessary. Now when I read articles about the importance of getting on meds for preventive means, I get angry at the doctor’s “lack of concern.” I feel like if I do nothing I’m just waiting for the other shoe to drop or am I just wanting to go on meds to prove that I have a disease? Sometimes I wonder if I have MS, but my tests (one of which was a MRI) which showed “at least” 4 lesions on my brain. Should I pursue the med idea?

Your clinical symptoms and MRIs seem consistent with an MS finding. It is not surprising, however, that you wonder if you have MS since your symptoms remit, and you may even forget you have MS sometimes. Is your neurologist an MS specialist? What you have read about the preventive effects of the ABCRN meds is correct, and while doctors used to take a “wait and see” attitude, MS specialists today are no longer waiting. We know that memory problems, attention deficits and slowed thinking processes led to an inability to continue to work ten years after diagnosis for 50 – 80% of people in a research study conducted before the ABCRN drugs were commonly prescribed, and can begin at disease onset (although they may escape detection for a long time).

The drug companies accurately advertise that “use of a disease-modifying therapy for MS has a demonstrable slowing effect on this progression. Disease-modifying therapy should be considered preemptively because there are no known methods to reverse fixed neurologic deficits. Once a patient begins medication, adherence to drug therapy may reduce the number of relapses and progressive worsening of the disease”.

This disease causes definite, permanent nerve damage and brain atrophy. Stop it while you can.”

Can you give me some idea of how much it costs to take the drug Novantrone for MS? I just need a base line to start from I have secondary progressive MS! Thank you for your help!

The wholesale cost of Novantrone is between $1400-$2300 (depending on dose amount) for each use, and is used 3 or 4 times a year for two years. You should check with your insurance and see whether they will cover this. Serono (the makers of Novantrone) have a website that gives more info about the drug. It is at http://www.novantrone.com. You can also call 1-877-447-3243.

I know this is a lot of money, but slowing down the progression of your MS is worth it. If there is any way you can work it to get the Novantrone, do it.

i have found a couple of remarkably websites. they all say that there was an improvement in their MS. the product they took is cytolog/colostrum. do you know of that product? do you know of any results?

There are a great many people and websites out there selling relief or cures for MS, among other diseases. These people know that folks with MS are desperate to do anything which will slow or stop their disease and some, unfortunately, take advantage of it. FDA approved drugs have been proven effective in double-blind placebo tests with rigorous testing methods. Few, if any, of the natural "alternative" drugs have been tested this way. That is not to say that not being tested invalidates them. It just means that they are a question mark, unproven and relying on testimonials.

One of the sites that sells these products (including cytolog and colostrum) has this to say in their disclaimer:

No product mentioned in these pages has been evaluated by the FDA and is not meant to diagnose, cure, mitigate or prevent any disease. If you have a health condition see your physician. Also, bear in mind that information presented in these pages about any product does not represent any claim made by the manufacturer of these products but is the opinion solely of the proprietor of this web site based upon his research.

Remember, although anecdotes are case histories when a definite link between a therapy and its results are obtained, getting well is also complicated. Just because a substance is taken and health is restored doesn't necessarily mean that the substance is the cause. Many diseases are self-limiting. In fact, most people get better, especially with minor infectious diseases. Some, like Multiple Sclerosis, tend to go into remissions and reappear later. Others, like herpes, appear in attacks that subside in time.

So, although the testimonials on these sites sound great, keep in mind that these are subjective, not objective, opinions. I would do as much research as possible on these products and attempt to find reputable medical websites for this research. I would also check with your doctor(s) and find out their opinions on these products. If, after this, you decide to try these products, then the cost will be whatever is charged per month to supply them, plus whatever emotional cost there may be to you if they do not live up to their claims.

In the end, the decision will always be yours. Make it an informed and aware one, understanding all the potential costs involved.

I need some help on how does Prokarin help you. My MS has been getting a lot worse the last 7 months and I do need some help please. Can anyone please tell me what to use because I have had MS for 26 years and need some help now please.

Prokarin is still a question mark as far as being accepted by the medical community. One study has been done so far with some results, but it is quite a small study so the vote is still out. You can find out more about Prokarin and this study by going to this website: http://www.edmsllc.com/.

Our website now has an article about the debate over Prokarin: The Prokarin Controversy. Also, keep in mind that insurance will not pay for this treatment and it costs several hundred dollars per month for the Prokarin patch.

I have been diagnosed as having MS, relapsing/remitting. The disease was diagnosed in September 1999, however it is apparent to me that I have had this since my later teenage years. I am now 44 years old. I would like to know if you have any information on insurance coverage for "alternative" treatment options as I decided upon diagnosis to exert my energies and dedication to rebalancing my immune function rather than buy time pharmaceutically. However my health care insurance company has declined coverage. I continued treatment at my own expense and have improved considerably unfortunately I can no longer afford this and I am starting to slip backwards as I had to stop treatment. My care provider has offered to continue care without charging me for it but it is not my nature to accept charity. If you have any suggestions as to where to find information on insurance coverage for unconventional treatment I would welcome and appreciate it.

I do not doubt that your symptoms started long ago. Client after client tells me this, and it is unfortunate that we did not have the technology or the understanding of MS that we have today that would have allowed earlier detection of this disease. Only recently have there been sufficient advances in MRIs and other diagnostic tools to catch MS earlier.

I am sorry to say that no insurance companies that I know of offer insurance for alternative treatments of MS. The reason for this is that, while very little hard medical evidence (placebo controlled, double-blind tests, etc.) has been gathered regarding alternative treatments, a great deal of very clear evidence as to the efficacy of the ABCRN drugs has been documented. Insurance companies will cover the ABCRNs because they have been proven to significantly slow the progression of the disease. Because of the length of time you have experienced MS symptoms, it is important that you consult with your neurologist soon to see if one of the ABCRNs is right for you.

While I have great interest in alternative and complimentary therapies, I believe that they should be used in conjunction with standard medicine – not in place of it. There are no MS treatments, other than the ABCRNs, that have documented proof of slowing or halting disease progression. Having said that, I also believe that some alternative/complimentary therapies may be very beneficial to those suffering from MS.

It is important that you discuss any treatments you are taking with your neurologist. Some herbs, for instance, could adversely interact with your body chemistry or other medications you are taking.

I know this isn’t the answer you wanted to hear, but I hope you will consider a compromise – a balance between conventional and complimentary.

Do you know anything about the new craze called "Oxycise"? It is an exercise program that teaches breathing properly to burn calories. Go to www.oxycise.com . Thank you

No, I have not heard of it before, but then there are literally hundreds of weight-loss and exercise programs out there, each one with their own "secret" and their own videos to sell. If you are really dying to try it, I would suggest a little digging into the university testing that, according to their website, was completed with positive results. That was the only reference to testing that I could find.

Deep breathing has been practiced for centuries in Yoga, Tai Chi, and Chi Gong. Exercising muscle groups from a stationary position has also been a part of these and other practices. It sounds very much as though this person has dug up a few very old ideas, dusted them off, repackaged them, and started selling them. I would say there is nothing wrong with the basic ideas put forth, just the idea of ongoing outlays of cash for a series of videos.

There are so many people out there trying to sell us the next "latest, greatest" craze that I would look twice and think three times before jumping on board. Check with your doctor. Check with a physical therapist. But when the people trying to sell you the product say "it works - just take my word for it" - don't!

One of my best buddies suffers from MS. She has been on Betaseron for a long time and recently switched over to Copaxone. She has been experiencing some symptoms and just wants to let it pass. I have other health issues and have had great success with Coenzyme Q10, as recommended by Dr. Andrew Weil in Spontaneous Healing. Has this supplement or glucosamine been tested in MS patients? Can you direct me to any other information sources about alternative medicine in MS patients? By the way, she is allergic to bees! Thank you in advance for your consideration.

Sue F

It is good your friend is on Copaxone, this is the best thing we can do for people with MS today. It reduces the number of attacks and slows the progression of the disease. No cure yet, but the injectible drugs offer hope for the first time in history for this disease. If she is experiencing symptoms she should consult her doctor because there are many medications to make living with MS symptoms easier.

I have not heard of any MS research with coenzyme Q10. You might consult Dr. Weil's website. It is good to know that she is allergic to bees so she stays away from that alternate treatment. Check our website for links to Alternative Medicine sites.

Ann

I am 60 and was diagnosed with probably to definite MS by the last two neurologists I’ve seen. I am writing because my manager has called me into her office several times in the last month out of concern for problems she is noticing with my cognition – following directions, detail work…. things I believe I used to be very good at. My MS symptoms include a definite cognitive component. I notice I am stressed now when I have to prioritize. Or when I have to switch tasks. The transition is hard for me. And sometimes I just get tired and want to give up.

I just discovered your website and saw that you have workshops on cognitive issues. My manager told me that she would like to know how to help me. She told me that she would even attend some kind of workshop or seminar to see what she could learn to help me.

Sometimes I feel like I am “losing it.” I am wondering what I would learn at the Cognitive Workshop. Or perhaps I should see an Occupational Therapist? I wonder if insurance covers those. Please send me info on both the cognition workshop and OTs.

Regarding physical symptoms - I can walk OK. No help (yet). But I have severe numbness and tingling in my legs, feet, and some all over my body. Sometimes my feet can be painful. My head feels like it is being squeezed.

What can you recommend for me? I appreciate your suggestions!

Thank you, Patricia

I am sorry to hear that you are struggling so much with the cognitive symptoms of MS. If you send me your snail mail address, I can send you a hardcopy of chapter 8 (Disclosure to Employer and Using Job Accommodations) from "The MS Workbook" (R. Fraser, PhD and G. Kraft, MD). Many of the issues you describe in your work are discussed in this chapter.

Another book which covers a great deal of territory in this area is "Multiple Sclerosis: Psychsocial and Vocational Interventions" (R. Fraser, PhD, D. Clemmons, PhD, F, Bennett, MSW). This book is a little more technical but very in-depth. You can use the links above to find both books on Amazon.com.

We also have some online articles which may be helpful: Accommodation Considerations for People with MS, Employment and MS, Thinking and Memory Problems in MS, and Missing In Action - Coping with Memory Loss in MS.

The next "Coping with Cognitive Issues Workshop" is being planned for September or October of 2007. With regards to an OT evaluation, if your insurance will cover it, we can provide names of a couple of OTs who work with some of our clients. If your insurance does not cover OT, you should check with the National MS Society (800-344-4867). They can sometimes provide funds for this kind of expense. You may also want to consider a neuropsychological evaluation to help identify areas of cognitive problems and as documentation for future medical issues. Some insurances will cover this as well. The above books and some of the articles discuss neuropsychological evaluations in more detail.

It may also be helpful to you to keep a symptom history and have a copy with you when you see your neurologist or doctor. A symptom history gives a listing of symptoms experienced, when they started, their duration and their severity. You can also use our questionnaires to help you with this.

I hope that this information will be helpful and get you started!

I was diagnosed 5 years ago and I have had cognitive problems the whole time. I went for a test and they told me I was at the top percentile and did not need any help in this area. How could this be? The problem is, I was having a really good day that day and I don’t think it really challenged my problems. I can’t organize or complete anything. Here is the main issue: I just started a new job and I don’t want them to know I have MS but it is starting to affect my work. Am I protected even though I’ve just had MS for a few years? Should I not tell them and let it just happen? Please help.

It is (unfortunately) usual for a neuropsychological battery of tests to exclude the “executive function” tests which document the type of problems you describe. However, I am surprised that they did not detect memory problems as I assume you have these as well. I would suggest you contact me to get a referral to a neuropsychologist in your area of King County who has had experience documenting these specific functions for patients who have had traumatic brain injury, as they can have the same problems you are having. It is possible to have these problems from the onset of the disease if the lesions are in the relevant part of the brain. Remember that neuronal atrophy begins even before any outward symptoms appear in MS. Working can become a serious problem with this type of disability. I think that you will have to share this with your supervisor and get some help in planning accommodations to help you work at your highest level (see our webpage on accommodations for suggestions).

I've had MS for 33 years and physically I'm in good shape but emotionally it's another matter. Here is an example: I can playing bridge one evening and feel normal and the next day I watch a movie that is sad and cry easily but after the movie is over my wife is OK! Me - I feel like crying all day. The other thing is that I have problems with anxiety when in social group like the Church chorus. My moods vary from hour to hour. Some days I can work in my shop and the next I can't concentrate. I've had the neuropsycho test and asked where I was on a scale of 1-10 and she said 19. So I'm above average. I seem to have lost control over my emotions. My GP says I suffer from emotional lability.

I've been on klonopin at 1.5 mgs per day for 15 years and tried to get off but in my condition it's impossible.

Thank you for your email. This is a topic which is often not easy to discuss, so I appreciate your candor and your questions. There are different factors to consider. People who experience mood lability may be depressed because of their situation. You describe times when you're functioning quite well, such as when you are playing bridge, then times when you feel anxious, or feel like crying for the whole day, or other times when you have difficulty concentrating. All of these can be symptoms of depression and grief, related to a person's situation, or how they see their situation. These symptoms could also be organic. By this I mean that the part of your brain which controls emotion may have lesions which are causing these symptoms. It may very well be a combination of the two scenarios I just described. You state that your GP says you have mood lability, and you seem to agree with this when you describe yourself as having lost control of your emotions. I would recommend that you see your neurologist, or a psychiatrist who understands and works with those who have neurological disorders.

Sometimes they treat mood lability with a mood stabilizer, or possibly a combination of a mood stabilizer and an antidepressant. They often treat ongoing anxiety with Klonopin. It would be good to talk with a psychiatrist, as this is their area of expertise. Some people don't want to use medications, or have unwanted side effects to their medications. In these cases talk therapy with a mental health counselor can be very helpful. In this way you have a comfortable setting where you can talk with an objective person about how this is affecting you.

You can also work on techniques which can be quite helpful in gaining more control over your emotions. Learning to recognize the triggers is often the first step. If you learn some of the triggers, you than can develop a plan on how to deal with it, such as using breathing exercises, removing yourself from the situation for a few minutes and using a diversionary activity, or sometimes writing in a journal helps. These are only a few ideas among many. I hope some of these thoughts and suggestions help, and I wish you the very best in your work on these issues. Asking for information, or asking for assistance is often the first step, and you have done that.

My Mother has had MS since 1997.She suffers from frequent anxiety about her condition. Is there a specific anti-anxiety/anti-depressant that works well with people with MS? Thank you for your time.

There are a number of such medications available. The best possible match for effectiveness without side effects will be different for each individual. Your mother needs to consult with her doctor for the best prescription for an anti-anxiety/anti-depressant drug. I have listed some links to webpages about this below:

I am in the process of being "watched" by my general practitioner for possible MS or lupus. My main question is, can MS 'cause' mood swings? I have noticed that in the past year especially, I have had several episodes where I seem to have become dramatically angry about things that I shouldn't have been. I have less patience with people, and my family complains that I am very irritable with them. I have been trying to control my mood swings since they have contributed to many family fights, but I have to make a conscious effort in order to do so. At times my anger bursts out on my children: it's like something will just snap. And there are times that I know I'm upset about something, but realize that I'm not reacting appropriately, but at the moment I still act out in this manner.

Any assistance or direction to get more information would be greatly appreciated. Thank you for your time.

Mood swings can be a symptom of MS, even when there is no family history of MS or mood disorders. Irritability, disproportionate reactions (anger, etc.) to daily events, and "wearing your emotions on your sleeve" are all fairly common symptoms of this. You should check with your doctor or neurologist for a trial of an SSRI antidepressant, which may level your moods. Stronger medications are also available if necessary.

Before you see your doctor, download and fill out our mood and cognition questionnaire. The questionnaire is in PDF file format, which uses Adobe Acrobat Reader to view. If you don't already have Adobe Acrobat, you can install it for free from this website: www.adobe.com/products/acrobat/readstep2.html. Take the completed questionnaire with you to your doctor when you go to see them (and make a copy for your own files). It will help them to track and document your symptoms more clearly.

Just remember - these are real symptoms with organic causes, and they can be corrected with the proper medication. This is not something you can control "if you just try a little harder". Show these articles to your family and/or friends and let them know what is going on with you. They will be much more supportive if they understand where this is coming from.