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Managing FAQ

 

MSCoE - Managing FAQs

Frequently Asked Questions about Managing MS. To ask a question use one of the email addresses on the MSCoE Contact Page

 
  1. I am a 70% service connected compensated veteran with MS - Honorably discharged 1986 - 1990 RA. Does the VA have a program for providing Service connected veterans with help in either acquiring or financing motorized or non motorized wheelchairs. My ability to walk is getting progressively worse and my endurance is down to about an hour.

  2. I am receiving care from the VA and I have MS. Can I get eye glasses from the VA?

  3. I am working with a veteran with MS. He sees me for counseling. He was looking through the internet and noticed that there is a VA that has a pain management program specific for MS. He is interested in finding out more but he didn't get the name of the center. I assume it is Portland or Seattle. If you could give me the name of the center and a contact person I would appreciate it.

  4. My husband has MS. He has severe light sensitivity in both eyes, could this be connected to his MS. Can I get some resourses for information on this problem

  5. If I have MS, what is the risk that my children will have MS?

  6. Why can't an MS Patient just communicate with his Neurologist via the internet? It seems to me a waste of time for myself and my Doctor to meet about every six months and spend about 10 minutes going over my illness.

  7. Do you know of a chair that raises up & down to facilitate transferring forth & back to a W/C? I'm trying to find a comfortable living room type chair so the p.t. doesn't have to sit in his W/C all day long. I'm familiar with chairs that tip forward but I would like one to go up & down. Thank you.

  8. Should I get a flu shot if I have MS and I am on an injectable therapy?

  9. Can MS cause heart trouble and what kind of heart trouble can be related to MS?

  10. I noticed on the MSCoE map that their are no centers currently in Illinois. Will there be a center in place at Hines VA center soon? It seems appropriate to consider since we have a great spinal cord team and unit in place now.

  11. Do any of your patients with cognitive deficits from MS benefit from the medication Donepezil?

  12. I was wondering if post-micturition dribble is common in male MS patients and if MSCoE specialists have any strategies for helping patients dealing with this condition?

  13. I have been diagnosed 18 years ago with MS and now it has hit me real hard, I'm not able to go the bathroom without a catheter and have to use a walker, what can I do?

  14. As a USAF veteran of the Vietnam Era, I had understood that women who have been diagnosed with Multiple Sclerosis, as a non-service connected spinal cord disease, would be eligible to receive certain services and/or compensation through the VA. Is this correct? If so, would you kindly let me know how I may obtain the appropriate paperwork? Thank you for your assistance, and I look forward to your reply.

  15. Does the VA use any type of electrical stmulation for people with foot drop,like the walk on device or the walk aide device?

  16. My husband is 100% SC MS Veteran. His treatment is through a VA Medical Center (Campus). Many of your suggestions say to contact your neurologist ... He never sees the same neurologist twice. When he goes for appointments he sees only resident doctors that have graduated and moved on by the time he goes back for another appointment. What can he do to get a fulltime neurologist? The head of the neurology dept. does not see patients, though his specialty is MS. My husband's treatment at this local VA Medical Center seems to benefit the doctors (educationally) more than it benefits him. What can he do, other than move to Portland?

  17. I am a care giviner for my wife and since she has been diagnoist with MS our sex life is suffering......help...Does MS affect sex drive.....???

  18. How do I treat fatigue in my MS patients?

  19. What are interferon-beta neutralizing antibodies and do they matter?

  20. I have had MS for several years. The latest attack caused numbness from my waist down and some weakness in the legs. The weakness improved but I still have the numbness. Right now I can't get any orgasms although I do get erections. Is there anything I can do?

  21. Why is the first attack of MS severe for some people and mild for others? Does the severity of the first attack predict the future?


1.  I am a 70% service connected compensated veteran with MS - Honorably discharged 1986 - 1990 RA. Does the VA have a program for providing Service connected veterans with help in either acquiring or financing motorized or non motorized wheelchairs. My ability to walk is getting progressively worse and my endurance is down to about an hour.

Service connected veterans for MS or other disorders that result in mobility issues who need a wheelchair are issued one that meets their needs. The VA does provide medically necessary equipment like motorized wheelchairs, scooters and other aids to help with mobility for eligible veterans with MS. In some cases, fatigue may be a severe enough impairment to warrant power mobility (scooters or motorized wheelchairs). A veteran who would like to be evaluated for scooters or other power mobility equipment should have their VA primary care provider send a consult to their facility’s wheelchair clinic, physical or occupational therapy units to consider the best mobility device for your life needs. In addition to medical equipment, the physical therapist and/or occupational therapist can also help you develop strategies that will help you conserve your energy. For more information click on the following website articles: Life Issues: Is it time for Wheels? Life Issues: Transporting a Scooter or Power Wheelchair

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2.  I am receiving care from the VA and I have MS. Can I get eye glasses from the VA?

Generally, eye care services are provided at each VA medical facility. Some VA medical facilities contract their eye care services out to private medical facilities. You will need to call your local medical facility for an eye appointment. Below is a list of some of the eye care services provided by VA medical facilities: 1. Comprehensive Eye Examinations provided by optometrists and/or ophthalmologist 2. Urgent examinations 3. Treatment of medical conditions of the eyes 4. Surgical Services for Cataract, Retina, Oculo-plastics, Neuro-ophthalmology,Glaucoma, and Cornea. 5. Post-surgical care 6. Low Vision services 7. Visual Fields Testing Ultrasound evaluation 8. Retinal Photography: Retinal and Fluorescein Angiography 9. Dispensing of corrected lenses and/or glasses/frames The list below outlines eligibility for eye glasses: 1. Those with compensable service-connected disability (Priority 1, 2, 3) (For example: 10%-100% service connected); 2. Those who are former prisoners-of-war (POWs) (Priority 3); 3. Those in receipt of benefits under Title 38 United States Code (U.S.C.) 1151 (Priority 3); 4. Those in receipt of an increased pension based on the need for regular aid and attendance or by reason of being permanently housebound (Priority 4). 5. For Priority 5, 7 and 8 veterans (0% SC and Non-Service Connected) the VA will not provide eyeglasses for normally occurring refractive conditions like: Myopia (near-sightedness), Hyperopia (far-sightedness), Astigmatism (“foot-ball” shaped eyes) or Presbyopia (need for reader glasses). However, Priority 5, 7 and 8 veterans with visual impairments or severe visual impairments caused by medical conditions may be eligible for eyeglasses.

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3.  I am working with a veteran with MS. He sees me for counseling. He was looking through the internet and noticed that there is a VA that has a pain management program specific for MS. He is interested in finding out more but he didn't get the name of the center. I assume it is Portland or Seattle. If you could give me the name of the center and a contact person I would appreciate it.

There are several VA centers with excellent services for individuals with MS and with specialty pain services. Since you are in Fargo, you are in the region of the MSCoE West. In the Western Region, providers at Seattle, Portland, and Denver have experience treating and conducting research on pain in MS. You can start by contacting through Outlook the MS Center of Excellence West Director, Jodie Haselkorn, or Associate Director of Clinical Services, Ruth Whitham for more information. A few additional internet resources on pain and MS include: http://www.vard.org/jour/02/39/2/Contents.htm http://www.nationalmssociety.org/spotlight-pain.asp http://sitelevel.whatuseek.com/query.go?crid=0cdbe805635fe761&query=pain Thanks for contacting us.

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4.  My husband has MS. He has severe light sensitivity in both eyes, could this be connected to his MS. Can I get some resourses for information on this problem

Light sensitivity can occur in MS, but it is unusual. In MS, the nerve that carries signals from the eye to the brain is sometimes damaged. When this happens, less signal makes it from the eye to the brain leading to a decrease in the amount of light that the patient can see. In other words, this is the opposite of light sensitivity. There are many causes of light sensitivity. Some of these include medications that dilate pupils and allow too much light in. Light sensitivity can also occur with conditions that cause scattering of the light when it enters the eye. Some of these conditions include cloudiness of the clear parts of the eye, the lens (cataracts), or the cornea. It is important to have an ophthalmologist evaluate people with light sensitivity in order to correctly diagnose the cause. Since light sensitivity is rare with MS, more common causes should be evaluated first.

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5.  If I have MS, what is the risk that my children will have MS?

The risk to the general population, with no one else in the family with MS is 0.1%. The risk to a child of a mother with MS is 3-4%. The risk to an identical twin of someone with MS is 31%.

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6.  Why can't an MS Patient just communicate with his Neurologist via the internet? It seems to me a waste of time for myself and my Doctor to meet about every six months and spend about 10 minutes going over my illness.

You make a very good point. There are times when you and your neurologist might find it appropriate to discuss your case over the internet. However, meeting with your neurologist every six months provides the opportunity for a better assessment of your overall health in managing MS. In a face-to-face meeting, your neurologist might see a difference in your mobility or hear something different in your speech pattern that you may not have considered if you were only communicating via email.  There are a variety of new technologies that allow more patient-doctor interaction that could eliminate many extra face-to-face visits. Please check with your healthcare provider to see if they have access to some of these new approaches.  It is important to continue with a combination of approaches to more effectively manage MS.

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7.  Do you know of a chair that raises up & down to facilitate transferring forth & back to a W/C? I'm trying to find a comfortable living room type chair so the p.t. doesn't have to sit in his W/C all day long. I'm familiar with chairs that tip forward but I would like one to go up & down. Thank you.

There are various commercial sources for easy lift chairs that can be raised forward to assist a person to stand. While these chairs are not designed specifically to raise up and down to assist in the transferring from one chair to a wheelchair, they do raise 3-6”. This might be enough to aid in the transfer. There are a couple of methods that our occupational therapists have used to help people move from chair to chair. There are chair risers that can elevate a chair 3.5 to 5.5” and there are chair cushions that are generally 5-6” in height that can help with transferring from one chair to another. In addition, they have built a wooden base from a 4x4 piece of lumber and attached it to a piece of plywood in the shape of the chair seat base. It increases the height of the chair cushion by 5” and increases the overall distance from seat to floor making it easier to transfer from one chair to another. These methods used in combination with a transfer pole have been successful. Another creative approach to consider is to adapt a 6-way driver car seat to a living room chair. For more information you can contact various government vendors such as AliMed, Sammons Preston Rolyon and other rehabilittion catalogs.

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8.  Should I get a flu shot if I have MS and I am on an injectable therapy?

According to a recent study published in the Achives of Neurology (2003), and one published in Neurology (2001), the flu vaccine (injectable) is not associated with an increased risk of an MS exacerbation. However, Dr. Dennis Bourdette, Professor of Neurology at Oregon Health & Science University has stated that nasal spray flu vaccine should not be given to persons with MS. He recommends the injectable flu vaccine over the nasal spray for patients with MS.

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9.  Can MS cause heart trouble and what kind of heart trouble can be related to MS?

The risk of heart problems also called cardiovascular disease is not due to MS directly impacting the cardiovascular system, but more likely through elevation of the cardiac specific risk factors. Epidemiologic studies report that people with MS have a higher rate of mortality from cardiovascular disease than the general population. Cardiac specific risk factors can be divided into two types: 1) nonchangeable (example: family history of heart disease) and 2) changeable (example: stop smoking). In the general population there are some nonchangeable risk factors that can increase the likelihood of people experiencing heart disease. Some of these factors include: people over 65 years of age, being male, family history of heart disease, and race. Some racial groups have a higher likelihood than others to experience heart disease they are African American, Mexican American, Native Indian, Native Hawaiian, and some Asian American groups. There are some risk factors that are associated with an increase in heart disease that can be changed or modified. Factors that are changeable include: hypertension, tobacco smoke, elevated cholesterol, physical inactivity, obesity and being overweight and diabetes. Individuals with MS may have difficulty getting enough activity due to mobility problems and fatigue. While all people need to work on the changeable risk factors, if people with MS have one or more of the nonmodifiable risk factors, it is important that they pay close attention to their medical needs. With any symptoms suggesting heart disease, patients should see their provider for further testing and diagnosis. If there are risks factors that are changeable it is important that you share them with your VA providers. They could help you with changing or modifying those factors to decrease your risk of heart disease. They might help you with developing an exercise program to reduce body fat and set up a time with a nutritionist to make dietary changes that could keep lipids and your body mass index within a normal range. If you smoke there are numerous smoking cessation programs within the VA that are available to help you quit. There are also medications and rehabilitation strategies to lower high blood pressure and to help with diabetes. The VA also supports other programs like stress reduction and alcohol abuse that are also changeable factors that are associated with heart disease.

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10.  I noticed on the MSCoE map that their are no centers currently in Illinois. Will there be a center in place at Hines VA center soon? It seems appropriate to consider since we have a great spinal cord team and unit in place now.

Centers in Hines, Chicago, North Chicago and Marion are now in place.

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11.  Do any of your patients with cognitive deficits from MS benefit from the medication Donepezil?

Donepezil (Aricept) is commonly used to improve memory function in Alzheimer's dementia. The effect of this medication on cognitive impairment in multiple sclerosis is not completely known. The largest study to date is Krupp LB, Christodoulou C, Melville P, Scherl WF, MacAllister WS, Elkins LE. Donepezil improved memory in multiple sclerosis in a randomized clinical trial. Neurology. 2004 Nov 9;63(9):1579-85. This and other studies represent early phase studies that indicate the use of Donepezil appears safe in MS. These studies also indicate that there is a modest improvement in cognitive function in many patients with MS. FDA approval has not been sought for this treatment, but many find that it helps some patients.

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12.  I was wondering if post-micturition dribble is common in male MS patients and if MSCoE specialists have any strategies for helping patients dealing with this condition?

Dribbling after urination is a common problem in healthy men, occurring as they get older. This varies from a few drops of urine to a "gush" that leaks out immediately after voiding has been completed. This symptom can be associated with bladder problems due to MS. Post-void dribbling is not the same as losing urine control (incontinence) between voids. Men with post-void dribbling can minimize their dribbling by pressing on their urethra under the scrotum and "milking" the urine forward toward the tip of the penis. If you have incontinence, you should notify your health care provider of the symptoms. Simple tests such as a check of volume voided and post-void residual, a urinalysis, and a physical examination will help clarify the problem and potential treatments.

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13.  I have been diagnosed 18 years ago with MS and now it has hit me real hard, I'm not able to go the bathroom without a catheter and have to use a walker, what can I do?

As you know, MS is a progressive disease and there are a variety of symptoms that people experience at different stages of the disease. However, there are good symptom management strategies available. It is important that you share your medical changes with your healthcare provider. Bladder problems affect almost 90% of the people with MS. Many people report that these problems can improve with medications; and some report that the problems seem to come and go, but do not totally disappear. There are a variety of bladder management programs that can help you with bladder dysfunction. Your health care team can prescribe appropriate medications, specialty aids and diet an exercise programs that can help you manage eliminating urine from your system. The majority of people with MS also experience changes in mobility. Many need a little extra help walking by using a cane or other assistive devices. The important thing to note is that using canes, walkers, motorized chairs and scooters are actually increasing your mobility. These assistive devices are giving you the freedom to go and do what you want. Another thing to consider, is that using mobility aids help conserve your energy. Many people with MS use motorized scooters while shopping. Instead of being concerned about “how tired they will be shopping” they know that they will have more energy using the scooter. The VA has a variety of assistive aids to keep you mobile. So think of symptom management aids as a way to support you while you Live with MS.

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14.  As a USAF veteran of the Vietnam Era, I had understood that women who have been diagnosed with Multiple Sclerosis, as a non-service connected spinal cord disease, would be eligible to receive certain services and/or compensation through the VA. Is this correct? If so, would you kindly let me know how I may obtain the appropriate paperwork? Thank you for your assistance, and I look forward to your reply.

We are not aware of any VA benefits or compensation specifically for women veterans with MS. All eligible veterans, regardless of gender, are potentially able to receive MS specific care. Some VA facilities treat MS patient in their spinal cord injury program while others may be followed by in the Rehabilitation Care or Neurology service lines. The first step is to establish eligibility. The easiest way to do so is by completing the 1010EC and submitting it with a copy of your DD214 to your local VA’s eligibility office; the 1010EC can be obtained at your local VA or online at http://www.va.gov under health benefits. For more on general eligibility requirements, refer to previous benefits questions. Compensation in the VA system can be complicated; please refer to previous FAQ’s that refer to that process.

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15.  Does the VA use any type of electrical stmulation for people with foot drop,like the walk on device or the walk aide device?

Yes, the VA does use Functional Electrical Stimulation also called FES for people experiencing problems with muscle stimulation. FES is one therapy method that involves using electrical stimulation to stimulate muscles into working. These electric signals substitute for weak or absent signals between the brain and the muscle which may allow the brain and muscles to develop new lines of communication (neuromuscular reeducation). It is normally used to increase the strength in the muscle while the individual works on recovering the ability to control the movement on their own. It is available for veterans in the context of evidence base physical therapy. However, not every VA medical center has FES units. You would have to check with your medical center to see if it is available or if you can get a referral. Below is some more information on FES and on getting FES equipment for home use. Hope you will find this helpful. In accordance with Centers for Medicare and Medicaid Services (CMS) guidelines, FES and FES equipment for home use: 1. Has completed a training program which consists of at least 32 physical therapy sessions with the FES equipment over a period of three months to enhance functional activity, i.e., walking (The trial period of physical therapy will enable the physician treating the patient for his or her spinal cord injury to properly evaluate the person’s ability to use the equipment. Physical therapy necessary to perform this training must be performed by a physical therapist as part of a one-to-one training program. The goal of the physical therapy must be to train the spinal cord injured patient on the use of the FES equipment to achieve walking and not to reverse or retard muscle atrophy.), AND 2. Has intact lower motor units (L1 and below) (both muscle and peripheral nerve), AND 3. Has muscle and joint stability for weight bearing at upper and lower extremities that can demonstrate balance and control to maintain an upright support posture independently, AND 4. Has brisk muscle contraction to NMES and sensory perception electrical stimulation sufficient for muscle contraction, AND 5. Has high motivation, commitment and cognitive ability to use such devices for walking, AND 6. Can transfer independently and can demonstrate independent standing tolerance for at least 3 minutes, AND 7. Can demonstrate hand and finger function to manipulate controls, AND 8. Has at least a 6-month recovery period following spinal cord injury and restorative surgery, AND 9. Can demonstrate a willingness to use the device long-term. Some exclusions to FES are as follows: 1. FES for individuals with hip and knee degenerative disease or a history of long bone fracture secondary to osteoporosis. 2. FES for individuals with a cardiac pacemaker, severe scoliosis or severe osteoporosis, skin disease or cancer at the site of stimulation, irreversible contracture or autonomic dysflexia. Contact your VA physician for a referral to physical/occupational therapy to see if this therapy is appropriate for your situation.

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16.  My husband is 100% SC MS Veteran. His treatment is through a VA Medical Center (Campus). Many of your suggestions say to contact your neurologist ... He never sees the same neurologist twice. When he goes for appointments he sees only resident doctors that have graduated and moved on by the time he goes back for another appointment. What can he do to get a fulltime neurologist? The head of the neurology dept. does not see patients, though his specialty is MS. My husband's treatment at this local VA Medical Center seems to benefit the doctors (educationally) more than it benefits him. What can he do, other than move to Portland?

We are sorry you are experiencing difficulties with the medical system. The VA does believe in serving veterans and their families with the utmost care and concern and believes that consistent attending care is a reasonable request. What we suggest is that you request to see the attending physician at your neurology appointments to address your questions and any medical concerns. In addition, you could request to visit another MS hub site at another VA medical center. You can go online with our website http://www.va.gov/ms at and look up additional VA MS clinics under the left side button, Locate a Clinic. There are some VA medical centers that contract privately with neurologists and that might be an option for you. We also recommend that you contact the patient advocate at your local medical center or representative from a veteran service organization like Paralyzed Veterans of America http://www.pva.org for additional support with this issue. The bottom line, veterans with MS deserve the best and most consistent medical care, and we will do what we can to help you achieve that for your family. Thank you for your FAQ on this important topic, and we hope this helps.

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17.  I am a care giviner for my wife and since she has been diagnoist with MS our sex life is suffering......help...Does MS affect sex drive.....???

Difficulty with achieving orgasm is common in both men and women with MS. This is in part due to the loss of genital sensation, due to injury of the sensory nerves from the penis and scrotum, or clitoris, labia and vagina. Loss of genital sensation often accompanies loss of sensation in the legs and feet. There are other causes of orgasmic dysfunction, including medications (e.g., anti-depressants, muscle relaxants, pain medications), depression, and nerve injury or nerve diseases other than MS (e.g. diabetic neuropathy, stroke). One treatment is to try and overcome the nerve damage with more vigorous sexual stimulation, either with manual genital stimulation or vibrators. Increasing sexual stimulation through other erogenous areas, or with audio-visual sexual stimulation can be helpful to increase the level of sexual arousal, so that the threshold for orgasm can be achieved. There are no medications that improve genital sensation, or improve one's ability to achieve orgasm.

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18.  How do I treat fatigue in my MS patients?

Fatigue can be effectively treated using a multifaceted, evidence-based approach that includes the use of pharmacological agents as well as training, education and exercise. For more information, see: Managing MS: Fatigue

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19.  What are interferon-beta neutralizing antibodies and do they matter?

Neutralizing antibodies (NAB) to interferon-beta occur in some patients receiving human recombinant inteferon-beta. NAB are detected in patients by demonstrating that a serum sample can block in vitro a biologic effect of interferon-beta, such as inhibition of viral infection or induction of MX protein. NAB bind to interferon-beta and interfer with its ability to bind to the Type I inferferon receptor. There are commercially available tests to detect NAB. NAB are given a titer and typically titers > 20 are considered significant. The three formulations of interferon-beta differ in the prevalence of induction of NAB. Avonex induces significant NAB titers in 2-5% of patients; Rebif induces NAB in 15-25% of patients; Betaseron induces NAB in ~30% of patients. NAB typically appear 6-18 months after therapy is started. They may disappear after continued therapy but frequently do not, particularly if the titer is >100. NAB induced by one interferon-beta product cross react with the other products. It remains uncertain whether or not there is any clinical significance to the development of NAB. Some physicians believe that the preponderance of evidence indicates that patients with persistent NAB with titers >20 do not derive any benefit from continued interferon treatment and recommend switching these patients to glatiramer acetate. Other physicians do not believe this and do not worry about the risk of inducing NAB or check for them.

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20.  I have had MS for several years. The latest attack caused numbness from my waist down and some weakness in the legs. The weakness improved but I still have the numbness. Right now I can't get any orgasms although I do get erections. Is there anything I can do?

Difficulty with achieving orgasm is common in both men and women with MS. This is in part due to the loss of genital sensation, due to injury of the sensory nerves from the penis and scrotum, or clitoris, labia and vagina. Loss of genital sensation often accompanies loss of sensation in the legs and feet. There are other causes of orgasmic dysfunction, including medications (e.g., anti-depressants, muscle relaxants, pain medications), depression, and nerve injury or nerve diseases other than MS (e.g. diabetic neuropathy, stroke). One treatment is to try and overcome the nerve damage with more vigorous sexual stimulation, either with manual genital stimulation or vibrators. Increasing sexual stimulation through other erogenous areas, or with audio-visual sexual stimulation can be helpful to increase the level of sexual arousal, so that the threshold for orgasm can be achieved. There are no medications that improve genital sensation, or improve one's ability to achieve orgasm.

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21.  Why is the first attack of MS severe for some people and mild for others? Does the severity of the first attack predict the future?

We do not know why the first attack can be severe for some people and mild for others, in fact we really do not know why any attack is severe or mild. It partly depends on where in the brain, spinal cord or nerves to the eyes the attack occurs and how much damage occurs. But why these vary between people and even between attacks in the same person is unknown. When looking at lots of people with MS, the type and severity of the first attack is one thing that seems to help predict the course MS will follow. People whose first attack is just sensory symptoms (numbness and tingling) or optic neuritis tend on average to have a milder form of MS than people who have weakness or imbalance with their first attack. However, this applies only to large groups of people and there are lots of exceptions. So it is very difficult to predict how severe an individual's MS is going to be based just on how severe or mild the first attack is.

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To ask a question use one of the email addresses on the MSCoE Contact Page