Ask Polly 2

This fatigue is kicking my a*&! How do you know when to ask for help, especially when you suspect that nothing can be done?

I am a teacher who seems to be having a major problems with fatigue. I had this week off, Christmas break, yet on New Year's Day I still feel as though a mack truck hit me. I do not feel that going to the doctor is helpful because all he will do is run a blood test to see whether I have an infection. Having had the week off, I should feel rested, yet I don't, and that worries me.

So, is this just MS fatigue hitting me full force this time? I am on Provigil, but it does not seem to be alleviating the fatigue this week. Is this something I must just learn to live with?

MS fatigue can be a very serious symptom and may well require more work on your part to keep it from kicking your a*&. Provigil is a good start. You may need to increase your dosage, or you may need to investigate other fatigue drugs such as Amantadine, Cylert, or Ritalin. Check with your doctor to see what he/she recommends.

People often combine these drug therapies with vitamins, exercise (yoga, etc.), diet, meditation, etc. Check out this webpage for suggestions:

Changing your daily routine and reorganizing your life towards more energy saving practices can also help. Create time in your day to take a 20 minute nap. Yes, I know that sounds impossible, but give it serious consideration.

Also, remember that Christmas and New Year's, although they are "holidays", can also be extremely fatiguing mentally, physically and emotionally. Parties, cooking and eating extravaganzas, relatives, shopping, outings and everything else that goes into the activities of this season make it the most stressful holiday of the year. This may be adding to your fatigue factor.

So check with your doctor, get back to your normal routine, and investigate other possible avenues of assistance with your fatigue. Among all these avenues there will be some that will be right for you, and will help get you back on your feet.

Freemedsandsolutions Most drug companies have Patient Assistant Programs that provide low cost or free medications to low-income people. This site provides instant, accurate information, and applications to apply to over 170 Programs offering more than 1,000 brand name medications. www.freemedsandsolutions.com

Free Medicine Program Helps you in applying for prescription assistance from individual drug manufacturers. A $5 processing fee per medication is required. www.freemedicineprogram.org

The Medicine Program Website for privately funded program that provides free medications to those without insurance coverage who can't afford their medications. www.themedicineprogram.com

Meds2You A medication assistance program which works with your insurance providers. If you qualify, they will take care of all medication shipping, billing and reimbursing. www.meds2you.com

NeedyMeds.com Provides extensive list of information about medications, manufacturing companies, assistance programs, contact information and more. www.needymeds.com

Partnership for Prescription Assistance brings together America’s pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them. https://www.pparx.org/Intro.php

Hope this will help!

Polly

I've been diagnosed with MS for about 5 years now (I'm 49 years old). The primary problem I'm having is with my DOCTORS. I have a LOT of pain in my legs and arms and it is making my life miserable. My primary doctor put me on Hydrocodone and I have been on it for about 3 years. I am up to six tablets (10/500) a day... and it is the only thing that makes it bearable (and sometimes it is not even enough). Then because of my HMO, I had to switch doctors. Now the neurologist and my primary physician both say that "pain is not associated with MS" and they don't want to give me any more Hydrocodone. I don't want to be a drug addict (and before this MS thing happened to me, I didn't take ANY meds or go to doctors AT ALL! But now that I MUST have the medical profession involved in my life, they are not helping me.)

I am so sorry to hear that you have been having such a miserable time. I am also a bit shocked that your doctor, and even the neurologist, believe that pain is not associated with MS. Go to almost any MS site and you will find a wealth of information dealing with MS pain.

Since I don't know which HMO you are with or what their rules are, I don't know whether you can request to be seen by another doctor.

Best case scenario - print out information from the MS websites (I'll give you links below) that talk about MS pain and take the info to your doctor and/or neurologist as proof that there is considerable pain associated with many people's MS and ask that they address the issue.

Second case scenario - try to change to a doctor who will listen to your needs and not balk at prescribing pain medication.

Third case scenario - if the HMO will not allow you to change doctors, and the doctor(s) in question refuse to acknowledge and treat your pain, file a grievance with the HMO against those doctors. The HMO may also have a social worker who you can talk to and have advocate for you. Also, the local branch of the National MS Society, or other local MS organization, may be able to offer advice or assistance with this issue.

It's a sad but true fact that the system that is supposed to support us does not always do so. That means that you will have to advocate for yourself and gather together the necessary information and assistance to fight for your rights. You can be perfectly polite about it - but firm. Walk through the scenarios one at a time until you have secured the medication necessary for you to be able to live your life.

I have recently been diagnosed with MS. I saw my MRI and it shows several white spots on the brain scan. The symptoms that got me to the emergency room, and then to a neurologist the next day, was waking up with numbness on my left side which progressed all day until the full side from head to toe was feeling numbness. Eventually it became more of a burning, tingly sensation, gradually lessening.

The neurologist said he was pretty sure it was MS but would do a spinal tap and that funny visual test (I can't remember the name of it). I had those tests and the spinal showed nothing he said. The visual test was "within the range of normal" he said.

For about two or three weeks the symptoms seemed less and less until all I felt was sort of a burning tingling feeling in the outside of my left hand, including the last two fingers. But then within a few days I started feeling that burning in my arm and my leg, only much stronger than I had it in the beginning. It feels like I have a very bad sunburn - but I don't feel the pain, just the extreme heat. It scares me because I don't feel heat on the outside of my skin, but from the inside I feel like I am burning up on my left side. For a few days now it has been really hard for me to go to sleep - so I have been taking a muscle relaxer to help me sleep. I don't have especially sore muscles, but the pill makes me relax and get really sleepy, so it helps.

I will be seeing an MS specialist next week, but I guess I am worried about what is going on inside of me and whether or not my disease is damaging my body or my brain further. I have not been given any "therapy" by way of medicine or otherwise. What I want to know is, have you heard of others with MS having this severe burning sensation? By the way, I can feel some on that side but when you put something cold on that side, instead of feeling cold, I feel pain. When I slide into my cold car seat, I only feel the cold on the right side of my body. It is really strange. This inability to feel temperature changes has been there from the beginning of this problem.

I read through your entire site and found it most helpful in understanding MS, but I didn't see this burning sensation I am having mentioned anywhere - which is why I am writing to you.

Yes, a burning feeling is a symptom of MS, but it is a treatable one. I believe Montel Williams (the talk show host with MS) talks about the same thing on a website interview. There is also an article on Pain and MS on our website.

Solumedrol is often prescribed for relief from these acute symptoms. Seeing your MS specialist as soon as possible is a good idea. Write down your symptoms, including the burning sensation, numbness, and anything else that does not seem normal. Note when they started, their duration, and when they stopped, as well as how severe they are. Give a copy of the symptom list to your specialist. Keep one for yourself. It is very helpful to keep track of all possible symptoms of MS. This helps document the disease for the doctors, and can be useful for you in future dealings with officialdom of any kind.

I have had MS for ten years and have been gradually losing my vision. Are there products out there designed for those with low vision?

YES. Anyone with vision problems could benefit from Community Services for the Blind and Partially-Sighted (206-525-5556, or 800-458-4888, www.sightconnection.com). They have a Low Vision Clinic, and Sight Connection Store with more than 200 products for living with vision loss, as well as an Assistive Technology Center. Also, have you tried the Seattle Public Library to borrow from their extensive collection of books on tape (206-386-4636)?

Financial Aid for eye exams and adaptive aids for those with low vision who cannot afford them is available from Community Services for the Blind and Partially Sighted. Call (206) 525-5556. Call the I & R specialist there for other products and services that might be helpful. Free Directory Assistance is available for those who cannot read the telephone directory due to vision loss. Call your local phone company to find out what’s available.

I am a newly diagnosed MS patient for a month now. It has been extremely overwhelming. I'm trying desperately to maintain a good attitude; however, the hot weather has been my biggest enemy with new and different symptoms coming each day. A friend suggested to try water exercises in an unheated pool. I did so last night and was careful not to over-exert myself. Mostly stretching exercises. I felt great! The cool temperature relieved a lot of my discomfort. However, 7 hours later, I awoke with painful biceps/triceps which only seemed to feel better when massaged. Once the massage has ended, the pain returns.

Since we are not physicians, we cannot give out medical advice. I would recommend that you speak to your doctor/neurologist, or their nurse, or a physical therapist about the exercise and the sore arm muscles. I can make some suggestions about your heat related symptoms.

Many people with MS are adversely affected by the heat. Some have found that cooling neck wraps or cooling vests can help lower body temperature and help with the flare-ups of symptoms brought on by the heat. You can find these neck wraps and vests online at several different sites. One of the sites that we use is Polar Products. In some cases, the National MS Society will provide funding for air conditioners for people with MS. I would check with your local branch.

A lot of people with MS also use water aerobics or hydrotherapy to enable them to exercise without overheating. They generally use pools that are kept a few degrees cooler than standard, although the pools are still heated. Is it possible that the chilliness of the water caused the muscles to cramp up later? Check with the doctor or a physical therapist about that possibility.

MS pain also comes in many different forms and affects different areas. It is possible that your painful muscles are an MS symptom. Again, check with the doctor to see if that could be the case. We have an article on MS Pain, which describes the most common forms of pain in MS and also what measures can be taken to alleviate them.

If you do talk to your local MS Society, they may be able to tell you about any specialized exercise classes, yoga, hydrotherapy, etc. for folks with MS. Your doctor’s office may also be able to provide some suggestions.

The bottom line is: exercise is considered to be a good thing for people with MS to help maintain their muscles and flexibility, and to alleviate spasticity. I am sure that, with a little advice and assistance, you can find an exercise regimen that will work for you without causing additional pain.

I’m really worried with summer coming on because the room I work in has no circulation, is on the south side of the building and is really heating up! What can I do?

Have you told your employer that you have MS? If so, he should try to help you find an accommodation so you can work at top efficiency. Is there another room you could move to that is not so hot? If not, you might want to get some information about the Steele Vest, a vest which has pockets that hold blue ice packs. It really works. It is also helpful when you are working outside to have one of those bandanas that you soak and tie around your head. It is filled with a material that holds the cool (we have some of these in the office for sale). Steele Vest information can be obtained at their website . Good luck.

I have bladder control problems with my MS and am looking for clothing to deal with this problem. Have you heard of any that won’t make me feel like an 80 year old invalid?

I ran into some underwear in a catalog the other day that look like ordinary clothing, and may do the job. They have ladies styles, and men’s briefs and boxers. All styles feature a sewn-in pouch that hold disposable pads to absorb moisture without affecting everyday wear. They are undetectable under clothes. Call for an “Apothecary” catalog from The Vermont Country Store at 1-802-362-8460. These products are listed in the Healthy Living section. It is a toll call, so I’d call in off hours.

Also, the good old Kimberly-Clark brand Depends has an updated product: disposable adult underpants that pull on and off like regular underwear and don’t look like a diaper. It is in such demand that the company is rationing supply to distributors, but is worth looking for. It is called “protective underwear”, with an elastic waistband and stretch panels, the new model resembles regular (if somewhat bulky) briefs.

I assume that you have recently consulted your neurologist for a referral to a urologist to catch up on the various medications which can help you manage this problem, I understand how much this can affect your lifestyle.

My sister is 46 years old and has had MS for 14 years. She has been able to manage a normal life up to now. Her job became very stressful back in January but she continued to push herself even with all the warning signs. Now is she out of work on absence leave and isn't getting any better. We were told that she is at the "end stage of MS" what does that mean to her and us the family.

I am not at all sure what her doctor meant by "end stage of MS". I would inquire from the source for an explanation. It sounds to me as though she has suffered an exacerbation (attack) brought on by stress and overexertion in her job. Is she getting treatment for her exacerbation? Is she on one of the ABCRN drugs to slow progression of the disease? Has she and her family/significant other sat down and done some research and made some plans to restructure her life to accommodate some changes?

If her doctor is not giving any more help than this ambiguous and unhelpful statement, then it might be time to find another doctor, preferably an MS specialist neurologist, or to go to an MS Clinic that is set up to assist people with MS. You might also contact her nearest National MS Society office and find out what kind of support, information and referrals they can provide. You can find the nearest chapter office by using the locator box on the home page of their website.

Also, have a look at our Life Planning page to get some ideas about planning for the future with MS.

She may need some help from you and others to get her life back together. If you read through some of our articles on cognitive, emotional, and fatigue problems with MS, you may find that some symptoms ring a bell. It can be very difficult to do any constructive life planning when you are having an exacerbation, especially if your ability to think and focus are affected. It can also be difficult to accept help when you have always been a proud and independent person. So life planning is more than just coming up with a game plan that accommodates the problems of MS - it requires a change in perspective. It is a point of honor in this society to be strong and self-sufficient, even in situations where this is neither logical nor practical. Talk to her about it. Better to recognize and acknowledge a situation, rather than pretend and put on a brave front.

Sorry to be so long-winded. But I hope that this will help steer her towards a better future.

I now hate the letters MS...they have been part of my life now too long...I am 35 years old...I have excelled in the business world and the academic world (for me I have I am not a scholar by no means, just a masters graduate)....I was first introduced to the letters MS when my mother was diagnosed 25 years ago...jeepers...now it seems so childish my response...little did I know that 25 years later I would hear the same diagnosis...MS...Possible, Probable, IT...who knows but it's there and I feel it and I can't let go of the feeling that SHE gave it to me...She meaning MOM good ole MOM...she couldn't give me away at my wedding, she had no money as a single parent....but she showed me how to, how to feel so sad that I don't know what to do. You see I love this woman I call MOM more than anyone would ever imagine...life was so hard for her but yet...she would always laugh and smile. I would pay to have her smile today. She no longer walks or talks well and she has raised a daughter who what ...dreads the day that I can no longer walk or talk...I love her yet I hate her.. she is my best friend yet my enemy...she sentenced me to what...her own life...should I be happy. Should I shout and say, YES I walked in my mothers footsteps...she pees in her pants as I try to to make it to the toilet...she slurs in her speech as I hope to finish my own sentence...life is what unpredictable...yes I am my mother's daughter.....and through it all I hope she knows that although I am miles away...I LOVE MY MOTHER...

You see my mother is not doing as well as I hoped she would, I was diagnosed at the age of 33 (I am now 35). I am getting married soon and we want a family my only wish is that I do not share with my children...my mother's gift to me do you know what the chances of that are? Thank you.

I have heard from many of the folks who write in about their struggles, not just with the obvious physical aspects of this disease, but also the mental, psychological, and social problems created by their MS. MS can wreak terrible havoc in families, even families with strong bonds and good, caring people. It tears up people’s lives and can devastate the plans they once had for their futures. Many people find that the MS affects their emotions and emotional control. Anger, frustration, tears, and anxiety may be much closer to the surface and harder (sometimes impossible) to control. And the people most likely to get the fallout from this are family members. Even when people understand and acknowledge other aspects of this disease, they often cannot understand or accept the emotional turmoil caused by MS.

All families have to cope with personal dynamics and family problems, but your mother’s MS, and now yours, have placed a huge additional burden to the struggle to maintain family bonds. You would have to have been a saint not to have felt some anger towards your mother for passing on this genetic inheritance to you, even though both of you know that it is not a question of fault or blame. And of course you are extremely concerned that this not be passed to your own children.

The answers to the question: “how much does genetics contribute to the development of MS in an individual?” are still being sought. Genetics researchers the world over are working to define the exact role genetics plays in MS, and what the chances are of siblings and children of MSers developing the disease themselves. One such research project showed only 3 daughters out of 94 parents with MS developed the disease themselves. This rate is, of course, much higher than the rate among the general public, but is still a relatively low percentage. Listed below are a number of websites dealing with genetics and MS. They should hopefully provide you with some facts and figures that will help you with your plans for the future. I would also recommend our article about future planning with MS, and our article about emotions and MS.

My wife and I live in the near east and want to have another baby. My wife is 37 years old and is living with MS since 7 years, since the borning of our son who is 7 years old today. Up to her doctor she is in a very good situation than other MS patients. I am wondering if we may have other big problems after the borning of our second child?

I would like to know if you ever heard of pregnancy causing an exacerbation. I had two exacerbations this year (the first to serious ones) and they both started at the same moment in my cycle. The second time I was actually pregnant. Things went wrong, so I lost the baby, but maybe we want to try again. However, I am afraid to get another exacerbation, I have not yet recovered from the last one. Can you tell me if there is any indication of pregnancy causing exacerbations in the first period of pregnancy?

The research to date indicates that there is no adverse effect of pregnancy on the long-term course of MS for the mother. Most women with MS do not have exacerbations during pregnancy, however there is a risk of exacerbation in the three months following delivery. I have seen cases of an exacerbation many months following delivery of the baby, and it is common for the first MS episode to be following birth. The major complication, from the infants point of view, is “does mom have eye problems from her MS? New research indicates that this is a major factor in the development of mother-infant bonding which is important in the development of brain tissue for normal regulation of emotions in the child. In the event of a severe attack of the MS following delivery, do you have budget plans for a “nanny” to provide 24/hr. nurturing for the baby if mom is wiped out by fatigue or disability? Has your wife’s MS caused mood regulation problems in her brain, cognitive and memory problems or physical strength deficits that would make caring for an infant an overwhelming experience adding to her stress level? Another factor to consider that if mom’s income is necessary for the family, college expenses come at a stage of MS where mother may have had to quit work. All these things should be considered before going ahead with your plans.

Tomorrow I am having my first job interview since being diagnosed many years ago. I trained as medical transcriptionist because I can work at home according to my own schedule. I wasn't able to begin looking for a job right after grad in June and so thought I'd apply at places where you work in-house for some time, before working from home. I guess I want to know how to approach the MS question. Any ideas?

According to the Office of Civil Rights, you are not required to disclose that you have MS at a job interview, since this is considered personal information. If, once you have started a new job, you feel the need of accomodations for your MS, you can at that time tell your employer about your MS and request accomodations be made for you.

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.

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