Dear Polly,
My wife has SPMS. She was diagnosed around 1984 as relapsing remitting MS and by 1994 it was chronic progressive. In 1998 she was allowed to take Betaseron. The Betaseron seemed to stabilize the disability, however, in the last year and half more disabilities piled on. She has lost 90% of her arms and hands, has speech and cognitive problems and now may have seizures. During this decline, the neurologist suggested that we stop Betaseron and see what happens. Things just seem to get even worse!
The worsening disability happened while my COBRA ran out (I retired to care for my wife). I found that my HMO (Group Health) could no longer service us due to restrictions on service area. So my wife's insurance is Medicare plus a supplement that does not include any prescription coverage.
So the only thing I can afford now is Avonex because Medicare will cover it as incident to a doctor's visit. Our doctor has agreed to administer the shots but he does not want to mess around with Medicare. Is there a prescription service that will provide the drug and bill Medicare?
A second question has to do with caregiving. I'm committed to providing care in our house but I am increasingly worried that I may be unable to provide care as a result of sickness or injury. How do you go about planning for temporary care while I may have to recuperate?
Ben
Dear Ben,
There are several websites that I have listed below of agencies that help with prescription coverage for people who have little or none:
http://www.themedicineprogram.com/
http://www.themedicationprogram.com/
http://www.needymeds.com/
http://www.meds2you.com/
Also, you can call Biogen's financial assistance program (1-800-456-2255) to see if they have assistance available.
With regards to your doctor's reluctance to deal with Medicare - if you feel that you do not have a good working relationship with your doctor, or feel that they are not listening to you or don't have your best interests in mind, you may want to consider changing doctors.
Update to this answer 8/05: Medicare now covers all the ABCR medications, so a patient no longer has to go to the doctor's office to receive their meds.
With regards to your question about caregiving, if you are local to King County (Seattle area) there are several groups that can provide assistance with caregiving and emergency respite:
Aging and Disability Services Respite Senior Information & Assistance: 206-684-0660 (must be 60+ to be eligible)
Crisis Clinic Emergency Respite: 206-461-3200 x626
If you are located elsewhere, you can contact your local National MS Society office (you can find it on their website) and ask for information and referrals to caregiver and respite assistance in your area.
Hopefully, this will give you enough information to get started.
Best of luck!
Polly
Dear Polly,
One of my closest friends was diagnosed with MS a little over a year ago and was placed on Rebif. She was also laid off from her job and her new employer's health insurance does not cover Rebif. She does not make enough money and neither her friends, family, nor I have the financial means to support her need of this very expensive drug...believe me, I would if I could.
Now I am not looking for "free Rebif" or anything like that, but do you know of any type of company or group or something that could help her. We all love her very much and the thought of her simply going off of this medication because she cannot afford it is both ridiculous and unbearable.
Any information you can give me or direction I can be pointed in would be GREATLY appreciated. Thank you so very much for your time and I look forward to hearing from you soon.
Gregory
Dear Gregory,
Serono, the company who produces Rebif, has a financial assistance number (1-877-447-3243). She should check with them first. Also, the other ABCs (Avonex, Betaseron & Copaxone) also have financial assistance numbers: Avonex (1-800-456-2255), Betaseron (1-800-948-5777), Copaxone (1-800-887-8100). One of them may be able to offer a better deal on their medication.
I have listed other potentially helpful websites (taken from our links page) below:
The Medicine Program Website for privately funded program that provides free medications to those without insurance coverage who can't afford their medications.
Pharmacy Indigent Program Website listing all the drug companies that have programs for people who have difficulty paying for medications.
Canada Online Meds A licensed Canadian pharmacy enables Americans to take advantage of lower prescription prices by ordering from Canada Provide low prices while maintaining quality, and confidentiality.
Hopefully, one or more of these will be helpful to you and to your friend. Best of luck in your quest.
Sincerely,
Polly
Dear Ann,
I have some questions/concerns about our insurance situation. My husband has MS. He lost his insurance coverage when he lost his job in June. I have insurance, but it is quite expensive and they have a pre-existing condition clause. I am considering applying for Basic Health. I know that coverage is important. Is there anywhere I can get a rating on different insurance or can I make an appointment with a counselor/SW? We cannot proceed until this is worked out.
Janine
Dear Janine,
The State of WA offers two health insurance programs besides the Federal/State Medicaid program for low income people. These programs are the WA State Basic Health and the WA State Health Insurance Pool. They have different eligibility criteria and there may be a waiting list to enroll. There are also a few health insurance companies that offer individual plans. The best thing to do is to contact the Office of the Insurance Commissioner (1-800-562-6900) or SHIBA (1-800-397-4422), an organization of volunteers trained by the Insurance Commissioner's Office to help people look at different insurance plans and find the one that best fits their needs. It is difficult to get new health insurance with a pre-existing condition. You can also hire an insurance broker who can research what's out there (but make sure they will be looking at more than just a couple of insurance companies and their plans).
If your husband lost his job because his MS is causing disabling effects, he should talk with his neurologist and discuss whether it is time to apply for SSDI (Social Security Disability). If he was fired and feels he was discriminated against because of disability, he has legal rights through the Americans with Disabilities Act and state civil rights laws and may want to pursue legal action. If he does apply for SSDI and wins, Medicare health insurance will not go into effect until 2 years from the date of his first SSDI check.
We also have SSDI Workshops 3-4 times a year. The workshop covers when to apply for disability benefits, the SSDI determination process, Medicare and Medicaid applicability and more.
I am listing a few additional resources below that may be useful to you:
Washington Protection & Advocacy System - Edmonds
1-800-905-0209
WCCD - Seattle
206-545-7055
Disability Resource Network - Redmond
1-800-216-3335
Crisis Clinic Community Info Line - Seattle
1-800-244-5767
I would gather all the information and possible resource avenues that you can before making any decisions, and these agencies should help you to do that.
Good hunting,
Ann
Hi MSA guys. You're the best MS agency anywhere. This is my question. I have a great job, I love it, but I didn't plan to stay in it for the rest of my career.
I was diagnosed with MS last spring, but (old story) in fact I've had it for more than 15 years, and my symptoms are pretty advanced. (Like I keep forgetting my name, and I get tired and fall down a lot.) Which led me to read one of those documents we throw in filing cabinets--the policy for my company's disability insurance.
The good news is that I won't starve to death, it would provide 60% of my salary. But it says right there that I'm not covered if I had the ailment before I came to work here. Ergo: does that mean that this is my last job? That no other company's disability plan will cover me from now on?
I need to know for a lot of reasons. Like: I'm in a high-stress business. What if I can't handle the stress here any more, but I could still handle a job in a slower-paced company? I don't want to stay home and watch TV all day, but I'd be lowering the salary on which my eventual disability income is based. Right?
Am I stuck here?
Ellen
P.S. I've read all the MS Websites, and I've never seen this question addressed.
Dear Ellen,
Thank you for the high praise! It's always good to know that our website is helping folks. With regards to the disability insurance, let's take it one section at a time:
Every state has it's own policies on insurance - which means that what holds for Washington State may not hold true for any other state. Also, disability insurance is not mandatory for employers. Before you do any job changing, find out what insurance policies your proposed employer carries, and what their limitations and exceptions are. Some insurance policies do not kick in right away, but only after 3, or 6 months, or even a year.
Employers with over 10 employees are required to carry COBRA Health Insurance by federal law. If your recent employer has COBRA, and you pay the monthly premiums, then the health insurance coverage will last a minimum of 18 months, or until Medicare kicks in. You have to wait until six months after the date you became disabled to work (based on Social Security standards) to receive your first SSDI check. Two years from the month you receive your first SSDI check your Medicare coverage will kick in.
Because insurance questions are always very specific to the individual situation, I suggest that you call the Insurance Commissioner's Office for your state. Find out what insurance laws govern your area, and what you should be specifically looking for in the way of insurance for your particular situation.
Lastly, you need to think about other life planning issues as well. Having contingency plans in place now will save you infinite amounts of trouble in the future. Start by checking out our website article on Life Planning. Although your job may seem especially stressful, many people with MS find that almost ANY full-time job is too stressful to deal with against the background of the fatigue, cognitive, emotional and physical problems that MS can cause. Remember that if you reduce the number of hours you work, you may be reducing the SSDI benefit you would be eligible for if you ever needed to claim your entitlement. Consult the Social Security Administration (1-800-772-1213) for the most recent information. Is working part-time at home a possibility, so that you could take naps? Do you have friends and/or relatives to talk to about this, or who might assist you? The MS Society and other national MS organizations probably have offices in your area. They may offer counseling, local information and resources, or other assistance.
Be proactive! Start making lists of people and agencies that can assist you. You might be surprised by what is out there once you start beating the bushes. Maybe you have friends that could help out with the research.
You are incredibly smart to be asking the questions, and getting the answers now, while you have a head start. Best of luck in your research!
Ann
SSDI / SSI / Medicaid/Medicare
Dear Ann,
I am currently on Avonex and would like to know if Medicare covers it. I called Medicare and they advised me that they would cover the cost if Avonex is on their approved list.
I would also like to know if Medicare would cover the cost of the injection, assuming I have it done in a doctor's office.
Sincerely,
Deborah
Dear Deborah,
Yes, Medicare covers Avonex per a law passed by Congress on May 16th, 2002 to restore Medicare coverage for certain injectable prescription medicines. Medicare now also covers all the ABCR medications, so the patient no longer has to go to the doctor's office. A new Medicare Perscription drug law goes into effect in 2006, although many things about it are still not clear at this time. I might also suggest a call to the Avonex info line (1-800-456-2255) to find out if they have any suggestions for you.
Here are some additional websites that may be of use:
http://www.medicarerights.org/
http://www.medicare.gov/
http://www.avonex.com/
http://www.insurance.wa.gov/consumers/SHIBA_HelpLine/dirdefault.asp
Hope this answers some of your questions.
Sincerely,
Ann
Dear Ann,
You and I have talked about this before, and I guess the time has come for me to find another living situation. I’m having increasing difficulty managing by myself alone in my apartment. I’m afraid of falling and not being able to get up. It is also difficult for me to cook for myself any longer. You know I have been working part time consulting for the past several years, but I have hardly any business left and will need to apply for Social Security Disability Income. I still have some savings left so I don’t qualify for a DSHS Copes worker. What would you suggest?
Stan
Dear Stan,
It’s good to hear from you again, although I too am sorry to hear that, as you say, " the time has come for changes". I do have several suggestions. We work with a lot of people to get their documentation ready for a SSDI application. We have workbooks, videotapes of our yearly SSDI Workshop, and several very detailed questionnaires to help you document the severity of every one of your MS symptoms. This is a help to your neurologist when he is called to verify your claim, and for the bureaucrats themselves. If you are not able to organize all this information, or have difficulty writing, let me know and we may be able to find a volunteer to help you fill out the paperwork.
One living option that many people explore is an Adult Family Home. Our clients with MS are generally not too thrilled with this option because many of the other people in the home are elderly, but sometimes there are just not a lot of options. Keep in touch and let me know if this is any help to you.
Ann
Driving Problems / Transportation
Do you currently provide transportation support for occasional doctor's appointments? If so, how does one request this service? Your response is appreciated...thank you!
Marianne
Dear Marianne,
Public Transportation:
Metro ACCESS
|
Paratransit program for Registration:
ADA eligible clients Reservations:
|
206-263-3113
206-205-5000
|
Seattle Personal Transit
|
North Seattle
|
206-860-8000
|
Neighborhood House
|
Seattle area - paratransit
|
206-461-6994
|
Van Go – Snohomish
|
Services Snohomish County
|
425-353-7433
800-562-1375
|
DART – Snohomish
|
Dial-A-Ride Transit for Snohomish Co.
|
1-425-347-5912
|
Wheelchair Getaways
|
Wheelchair Accessible Van Rentals
(Shoreline)
|
425-788-3718
888-376-1500
|
Volunteer Transportation Services
|
Senior Services: Must be 60+, able to self-transfer. Call by Wed. of week before appointment.
|
206-448-5740
|
Dear Ann,
My mom has had MS for many years, and can still walk short distances with the help of a cane. She works part-time quite a distance from her home. She is divorced from dad, but has someone to come in and clean, and help with meals. My brother and sister and I are all grown and live away from home, so do not see her all that often. Here is the problem: I recently rode to the mall with my mother and her driving scared me to death! She almost backed into a car in the parking lot and drove through a red light. I wasn’t entirely sure that she remembered the way home, as we got lost on the way back from the mall. Her car has a couple of scrapes on it that I hadn’t noticed before. I haven’t ridden with her for about a year and I was frightened that she had gotten so bad. She won’t even consider giving up driving because she says it is her independence. What can we do?
Judy
Dear Judy,
You are not alone in your fear for the safety of your mother and others on the road. This is a common problem after people’s MS symptoms have progressed, even with hand controls for the car and other adaptive devices. Vision problems, memory problems, concentration and judgment may all be issues, which can affect safe driving. I can understand how agonizing it is to lose the independence to go where you want to go, when you want to, but we have to balance this against safety issues. There is a booklet which may be helpful in deciding if the time has come for your mom to curtail driving a car. It is published by the AARP, and it would be a good idea for all of you children to get together with your mother and all give your observations on her driving skills as shown on the different tests in the booklet. It is called Driver Skill Assessment and Resource Guide, publication D14957. You can request a copy from:
AARP Fulfillment
EE01251
601 Z St. N.W.
Washington, DC 20049
You might also request a copy of D16686 Community Transportation Resource Worksheet from the same source. These were designed originally for older adults, but work equally well for people living with multiple disabilities.
Of course, you will want to encourage your mom to have a new eye exam to determine safety for driving. Additionally, the State Licensing Dept. does Driving Evaluations, but nationally it has been shown that these are not accurate tests of some of the MS disabilities. Even though someone passes this test, they may still be unsafe on the road.
Now, let’s consider transportation options. All metro buses are now “lift equipped” so that if your mom ever needs to use a wheelchair, she could still ride a regular bus. If she is unable to walk as far as the nearest bus stop, she could be eligible for Access curb-to-curb van service. It is a shared ride service and requires advance registration to request a ride. There is no low income requirement for the paratransit program, but your doctor must certify that you are disabled and cannot use the regular bus. Under certain circumstances, a standing ride may be reserved to and from the same place at the same time, for instance to go to work. Demand response service is available for a one-off trip, for instance a doctor’s appointment. Call 206-263-3113 for an application and info on current fares and areas where service is available, as there have been recent changes. Service to rural areas may offer curtailed days and hours. If an in-person interview is required to determine eligibility for the service, Metro will provide free transportation to that interview.
I understand that Albertsons has a website service to order home-delivered groceries in King County at www.albertsons.com. Good luck!
Ann
Dear Ann,
I need to know what resources are available out there for my brother Steve. He is 43 years old and has had MS for many years. He now lives with my mother, but she is in her 80s and is unable to keep up the house herself since dad died last year. She wants to move to an assisted living facility, but my brother will not leave the house, and he can’t manage on his own. She also needs the money from the sale of the house. I am unable to care for him due to my family obligations.
Let me tell you a little bit about Steve. He is in a wheelchair and on SSDI, SSI and Medicaid. He is very difficult to get along with because he feels that other people are dangerous to him. He doesn’t bathe regularly and mistrusts the food that my mother serves. He doesn’t drink enough liquids because of bladder problems, and is dehydrated. He has a pressure sore, but won’t go to the doctor. He has received telephone bills from “Psychic Friends” for hundreds of dollars that he has no money to pay for. We are all at our wit’s end.
Suzanne
Dear Suzanne,
Several thoughts come to mind. First, your brother’s judgment does indeed seem to be compromised, and he is unable to live alone safely. There is now new technology that can show the brain atrophy due to MS, and the damage to the parts of the brain responsible for good judgment and ability to make rational decisions about his care. This, together with the behavioral evidence, should be sufficient to qualify him for a legal guardian. What is often done in cases of incapacity is to arrange for a guardian to be responsible for the important medical, housing and financial decisions. He is definitely in an “at risk” category now. The RCW (Revised Code of Washington 11.88.010) states that “a person may be deemed incapacitated as to person when the superior court determines the individual has a significant risk of personal harm based upon a demonstrated inability to adequately provide for nutrition, health, housing or physical safety”. You could petition to be his guardian yourself, or arrange through his DSHS Case Manager to pay the expenses for an professional guardian for him since he already qualifies for their services. His SSDI and SSI can be applied to payment for an Adult Family Home as he currently does not have need for nursing care. He has a Case Manager through DSHS and you should contact this person to discuss these issues. Contact us at 206-633-2606 for the name of a lawyer to help you obtain a guardian for Steve. The lawyer’s fees should be covered by DSHS as well.
Ann
Dear Ann,
Thank you so much for spending time talking with me about my sister in Texas. I sent them your articles on cognitive processing, and a summary of our conversation. After a strong recommendation to my brother-in-law to move her to the nursing home she wanted, he finally agreed and moved her yesterday. Our conversations and your articles had much to do with his willingness to move her. I sense that he and my other sister will better understand the physical component in Susan’s emotionality, resulting in more patience and wisdom. My thanks to you for your work and your writing.
I have high hopes that the head nurse, whom my sister feels rapport with, will be able to work with (not against) her and that things will ease some – at least for awhile. Thanks to you I can now sleep better knowing caregivers have more information. And my sis got a say. We care so much for her, and it has been hard to accept that we can no longer manage her care by ourselves. I liked your recommendations for compensation strategies. I did chuckle though, my family is not known for their strong skills in interpersonal communication, especially around feelings. At least I will be able to use them with her on my visits. Who knows, maybe they’ll try. In gratitude,
Sophie
Dear Sophie,
I meet often with family members of people with MS to help them coordinate services to help, and to discuss both their love for the person with MS, and frustrations in understanding MS changes.
Go to "About MS" and find "Articles" on our website. Scroll down to MS Symptoms for articles on emotion and MS, and MS and thinking problems. Even when we cannot care for loved ones with MS ourselves, we can take a proactive stance in helping their caregivers to understand the changes in their personality that are due to MS. It can lead to more empathic care, which is of course, what we want for them.
Ann
Dear Polly,
As a 43 year old woman suffering from MS, mostly sensory in nature, what can i do for the vertigo and migraines that i often get?
thanks,
Salvia
Dear Polly,
I am wondering about the stem cell transplant procedure. I have a good friend that is dealing with MS and has considered this but the VA will not pay for the procedure. I am thinking of doing some fundraisers in our Paintball community to help him out since there is no way he can afford it on his own. How much would one have to pay for this procedure. I am guessing it will be a small fortune. I hope with the good will of people and the many people I know I can help him out.
Dear Michael,
It is very good of your to help your friend. Our recent article on Stem Cell Therapy can answer at least some of your questions, but I believe the procedure is around $150,000. Dr. Kraft at the University of Washington has just completed one stem cell trial and is starting a new one. They are willing to work with people and with their insurance companies to enable people to enroll in this trial. Dr. Ian Duncan, of the University of Wisconsin, has also been conducting studies on stem cell transplants. If your friend would be interested in participating in Dr. Kraft’s new study, they should contact Bernie McLaughlin, Research Nurse, Fred Hutchinson Cancer Research Center, at 206-667-4916 or bmclaugh@fhcrc.org.
Polly
Dear Polly,
I am a 38 year old female with 5 children and a very very supportive husband. I was diagnosed about a year ago with MS. I have been doing good with it up until Sunday night, when all of the sudden I became slumped over in my chair and unresponsive my husband said I didn't even know who he was. I was drooling really bad on the right side of my mouth. I came to after about 2 hours.
Is it common for MS patients to have spells like this. Could this have been a seizure or what? My husband said when he noticed me I was crying. I remember none of this.
Thanks
Molly
Dear Molly,
The opinion seems to be fairly evenly divided as to whether the incidence of seizures is higher among the MS population versus the general population. One thing that is certain is that there are drugs which will control these seizures, as well as the spasms that many people with MS suffer from. Take a look at the articles listed below for more detailed information about this:
http://www.nmss.org/Sourcebook-Seizures.asp
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=
pubmed&dopt=Abstract&list_uids=12233923
You should also contact your doctor/neurologist (if you haven’t already) and let them know about the seizure. They can provide information to help you control this and keep it from impacting your life or your family. Contact your local National MS Society office and see what local resources they can suggest to help you. MS can be physically and emotionally exhausting and you need to have some backup plans in place in case your MS symptoms make it difficult to look after your family.
My best wishes go with you.
Sincerely,
Polly Sullivan
Dear Polly,
Has anyone considered the importance of estrogen on the suppression of the immune response? I believe that during pregnancy, estrogen is high, and provides a protective shield against attack. I also believe that estrogen drops sharply post-partum, which seems to contribute to the high exacerbation rate. Yes, you feel great during pregnancy and high estrogen, and you feel bad afterward as this level drops. I have noticed this even during my menstrual cycle: I feel great during the first 2 weeks of my cycle, but after ovulation and a drop in estrogen, I feel terrible. My body suddenly realizes that I am not pregnant, and drops estrogen.
Also, the huge turning point in MS patients seems to be between the ages of 48-50, no matter what the age of onset (i.e. menopause). This also seems to correlate with a permanent drop in estrogen levels. Many women go quickly downhill without this hormone. Has anyone studied this phenomenon? If so, where can I find the literature? If someone HAS studied this, then why don't we treat MS with estrogen? Hmmm...
Lastly, I have no idea why neurologists insist on telling women that pregnancy is safe for MS patients. It puts a HUGE strain on both a woman's body and on her responsibilities. Why not advise her to adopt, and make sure she has a great support system? Why is the doctor's advice so generally positive towards this?
Thanks, Cheri
Dear Cheri,
Yes, quite a few researchers are studying this and various research projects are underway right now. I have provided links below to several I have found. Rhonda Voskuhl (with the Reed Neurological Research Center), in particular, has worked on a number of studies devoted to this. Have a look:
http://www.abc.net.au/rn/talks/8.30/helthrpt/stories/s62050.htm
http://www.mult-sclerosis.org/news/Sep2002/GenderResearchCollaboration
ResultsIn6NewProjects.html http://www.biomedcentral.com/search/results.asp?db=pm&terms=
Voskuhl_RR&field=AU
Hopefully, these articles will provide you with places to inquire for further information, or possible inclusion, in one of these studies.
Sincerely,
Polly
Hi Polly,
I am caregiver for a beautiful lady who has MS. She is not a light weight and needs a fairly determined effort to lift her in transfers etc. This used to be accomplished via the usual methods of lifting, however she has recently begun suffering from pain in one shoulder. We feel this pain may be due to arthritis or repetitive strain.
Both have yet to be checked out, but in the meantime I wonder if you can recommend any 'lifts' that do not involve pulling under her arms. I would also be so grateful if you could refer me to a site that illustrates various different methods of lifting. Despite extensive searching, I have been unable to find any such sites.
I (and my lady) will be very grateful for your advice.
Regards,
Madeline
Dear Madeline,
The best way to approach this would be to call this lady’s doctor and get him/her to authorize a visit by a physical therapist who can assess your client and her living situation and be able to recommend the best solutions and equipment for her. If she has insurance, then the PT can help get the insurance papers together for equipment/lift requests. If she does not have insurance, I might check with the local National MS Society office (you can find the one nearest you through the www.nmss.org website) to find out if there are any loan closets nearby that have lifts, or agencies which offer funding for such items.
Your lady might also benefit from some physical therapy to improve her muscle tone and flexibility so that she does not injure herself further.
In the meantime, here is a link to a site which lists numerous websites that sell lifts: http://www.wheelchairnet.org/WCN_ProdServ/Products/
adldev.html#anchor543593
The PT should be able to offer advice on what your client needs in a lift. I was unable to find a site which illustrates transfer or lifting techniques. I think that you should ask the PT when they come to show you any helpful techniques. There might even be classes in the area to train caregivers in such things. Check with the National MS Society or other local non-profit agencies to see if any such training exists in your area.
Best of luck to you and your client!
Sincerely,
Polly
Dear Ann,
I am an MS patient on Betseron since 1988. I was one of the people in the trial of the drug in London Ontario, Canada. I am, I believe, the only person in that trial reduced to half dosage of the drug because of elevated liver enzymes. Now they have added mannitol (13mg). I have taken 13 injections and I do not feel well. I saw my family doctor and he took blood which came back normal. He advised me to drink to prevent dehydation and to do certain exercises for the muscle cramps in my calves. My question to you is: Have you heard of this problem with others? Or do you you know any other treatments for the side effects of mannitol? Today I am having terrific headaches from my neck up into the back of my head. Any info you can supply would be appreciated.
Sincerely,
Brenda
Dear Brenda,
You need to talk to your doctor and/or neurologist about this drug and also about the side effects. I have looked up mannitol and have found that headaches are one of the possible central nervous system (CNS) side effects associated with this drug. There are also numerous other side effects also associated with the drug that can be quite severe. Please research mannitol and take note the possible side effects. If you are experiencing any of them in addition to the headaches you will need to let your doctor(s) know as soon as possible.
You should find out from your doctor(s) why they feel this drug is necessary, whether there are any alternatives to its use and, if need be, get a second opinion from another neurologist - preferrably one who works with MS patients on a regular basis. Is it possible to switch to one of the other disease-modifying drugs (ABCRNs) if it is the Betaseron that is causing your problems? I would have a look at the possible side effects of each of the ABCNRs.
You must be pro-active when dealing with your doctors, and also try to be as well informed as possible. Gather your information and try to become as knowledgeable as possible about the subjects and drugs under question. Do this before you meet with your doctor. Write down your questions, and have a copy of any info you've gathered that is pertinent. Make sure your doctor answers your questions to your satisfaction - not his. Make sure he/they explain what is going on to you until you are sure you understand. If you have cognitive or memory problems, bring along a friend or relative to help you with this and to record the information.
This is your body, your money, and your life. They are working for you - not the other way around. The meeting does not need to be argumentative or confrontational, but it does need to answer your questions, present your symptoms (the side effects of this drug), and cover what possible alternatives there are to this course of treatment.
The person with the most vested interest in this is you, which means your ability to get the best possible treatment may well depend on how much homework you do and your plan of action to get the answers you need. If the task feels too daunting, draft some help from friends, family, MS counselors or social workers, NMSS, etc.
Best of luck and good hunting,
Ann
Dear Ann,
Thank you so much for your help with an insurance question I had a couple weeks ago!
My husband and I plan to relocate to WA next month, but I've heard people say things like, "Washington is the MS capital of the country," etc. I checked it out and found that MS is more prevalent in "certain northern latitudes including Washington." Now, I was relocating to escape the heat everywhere else in the country. Is the high prevalence of MS due to relocations by people who already have MS or is there just some predisposing factor if you live in WA? I know there's been some research on allergen or environmental causes of the disease, and now I'm a bit concerned that this could be what's going on in WA. If the prevalence is higher simply because one lives in WA, then I need to reconsider moving there.
Please let me know what info. you have regarding the prevalence compared to national averages or where I might find such info.
Thanks!
Cherie
Dear Cherie,
Yes, the prevalence is higher in the Pacific Northwest. Some of this is due to folks with MS moving here from other parts of the country because there are many resources in this area for people with MS. Some of it is due to the high percentage of people living here who are of northern European stock, which has a higher incidence of MS than other ethnicities. Some of it is due to our mild climate. MS seems to be more prevalent in mild climates which do not experience severe cold or severe heat. The most accepted theory is that a virus contracted in childhood is partially responsible for a predisposition to acquire MS. The idea is that this virus is more common in latitudes with a mild climate. Contracting this disease seems to be a case of multiple factors which, when they reach a certain combination or level, become MS.
Most experts in MS agree that it is often contracted quite early, in childhood or teen years, but because the initial symptoms are often mild, it is not recognized or diagnosed until much later. Enhanced MRIs and new techniques are catching more people with MS earlier in their lives. It is a sad truth, though, that many people suffer from MS symptoms for years before being diagnosed.
The bottom line here is that, since you already have MS, moving here will not change the course of the disease one way or another, although moving away from a hot climate may help your symptoms and fatigue considerably. Studies have been conducted that show that moving to an area high in MS is only likely to affect you if you move there when you are quite young, and are predisposed to acquire the disease through genetic or other factors. So moving to an area high in MS when you are an adult does not increase your chances of getting it.
When others make blanket statements, including the newspapers and TV, you should take it with a large grain of salt. Often people are only repeating what they have heard, with no idea of the veracity of their statements. Newspapers and TV like to present stories with lots of impact and often don't bother to research very thoroughly or present both sides of a picture. The Internet, too, while being a wonderful source for research, needs to be approached with some caution. Make sure what you are reading is coming from a reputable source.
Best of luck on the move! Hope to hear from you once you arrive.
Sincerely,
Ann
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The Multiple Sclerosis Association of King County
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