Here is My Question:

Currently, I am suffering from MS drunks/staggering. Take OTC meds for the symptoms: bonine. Burning and severe fatigue occur. I take Provigil for fatigue. Are there any other recommendations that you can make regarding burning sensation? I take Cymbalta and Gabapentin for pain. Thank you.

Answer:
Here are some previous blogs on burning and pain that might help: 

• The first is on what causes abnormal sensations and pain (such as the burning you are feeling) in multiple sclerosis READ MORE  
• The next is on burning sensations READ MORE 
• Here is the symptom page for pain READ MORE
• This is from the NMSS on pain (such as burning) with some good resources READ MORE

Other than Cymbalta and gabapentin, other possible medications you can discuss with your doctor include:  amitriptyline, nortiptyline, lidocaine or capsaicin creams, pregabalin, etc.  Symptomatic medications are never intended to be used indefinitely, but only during times of increased symptom severity.  The other principle in symptom management to keep in mind is that not all symptoms need treatment.  Any medication used to treat these symptoms can produce side effects (that may be worse then the symptom you are trying to treat).  A good rule of thumb is to determine if the symptom you are trying to treat is limiting you function or ability to accomplish the necessary activities of your day.  If the answer is yes, then a symptomatic therapy should be considered. 

A. Scott Nielsen MD MMSc
Virginia Mason Multiple Sclerosis Center

Here is My Question:
Is my neurologist confused? When my neurologist looked at my MRI he advised me that my MS was not active. When asked about my spine, he replied all was good but the radiologist were not sure. So I asked him again if it was not active and his response was again they were not certain. My diagnosis of my MRI 3 yrs before my recent one, was indeed just in my brain. Now I am wondering if in fact it is also in my spine? Can a Neurologist be confused????

Answer:
There is always a level of uncertainty about the outcome of any test in medicine. This uncertainty can exist on several levels

1. The test may have a high degree of normal variability in a population and is not very specific for any condition. A physician who does not take this into consideration may use the test incorrectly and create confusion regarding the diagnosis.

2. There can be technical limitations of a test. For instance, adequate interpretation of an MRI scan can be limited by artifacts from movement, pulsation or metal objects. This is particularly a problem when trying to interpret an MRI of the spinal cord. A poorly trained observer may interpret and artifact as an MS lesion or vice versa.

3. The test is obtained in the wrong population and interpreted incorrectly. For instance, white spots on an MRI in a elderly patient rarely means MS but is more often (but not always) associated with MS in people under 35.

The bottom line is that MRIs must be interpreted by experienced individuals and the interpretation must take into account an expert clinical evaluation.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Question:  
Is it OK to take milk thistle and Tecfidera?

Answer:
Milk thistle has been studied extensively in people with liver disease and diabetes and it may be beneficial in the treatment of these conditions. Some have advocated it’s use in people with MS to reduce oxidative stress associated with chronic inflammation in the central nervous system. We have no information available at present to either support this recommendation or recommend against the use of Milk Thistle. Specifically, there are no reports of any harm occurring in people with MS who take Milk Thistle. Like any other ingested substance there may be some people who do not tolerate Milk Thistle or are allergic to Milk Thistle. 

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
I'm taking Tysabri. Can I use Maca?

Answer:
Maca is a Peruvian Herb with purported properties that could theoretically be beneficial to people with MS. It is said to reduce oxidative stress reactions, and this has lead some people to use it alone or in combination with other treatments for their MS. There is no current evidence of either harm or benefit in people with MS, and there is no particular reason to advocate for or against its use in people with MS.  

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Question:
Is Cymbalta used for MS patients for pain? At the moment I take 30 mg but my doctor suggested 60 mg after one week.

Answer:
Cymbalta is used to treat depression and chronic pain. I find it particularly useful for patients with disrupted sleep and depression co-existing with their chronic pain. It is usually started at the 30 mg dose and increased to the 60 mg dose. Ask your doctor about potential side effects and good luck.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Please welcome Sarah Wargo, PT, DPT, MSCS, to HealthCare Journey! She is a physical therapist who works primarily with people who have Multiple Sclerosis.  She obtained the Multiple Sclerosis Specialist Certification (MSCS) in 2013, which is a certification confirming a higher knowledge and skill set to work with people who have Multiple Sclerosis.

She works at Mount Sinai Rehab Hospital and the Mandell Center for Multiple Sclerosis, in Hartford, CT; where she has been a member of the MS rehab team for 5 years.  As part of the rehab team, she works closely with the occupational therapists, speech language pathologists, medical staff, and fitness staff to provide the best care possible to patients. As a physical therapist, she performs comprehensive PT evaluations and treatments for persons with MS in order to help maximize their function, mobility, and safety at home and in the community.

Sarah obtained her Doctor of Physical Therapy degree from Sacred Heart University in Fairfield, CT.  Before that she obtained a Bachelor’s degree in Biology from Iona College, in New Rochelle, NY.

We are very pleased that Sarah will be answering your questions about physical therapy!

Here is My Question:
Emotionally draining??? Am I the only one that feels exhausted by my MS? The feeling of no one understanding me or my husband telling me I keep talking about my MS and for my own sake it would be healthy to just let it go......this is true but at the same time I feel very isolated with this unknown disease. Are these normal feelings that come with MS???

Answer:

Dear Writer,

People with MS often feel that their loved ones do not understand what it is like to live with MS. They forget that before MS became part of their lives, they didn’t understand it either. We turn to those who are closest for support and encouragement, but there are times that we need to talk to someone who really ‘gets MS.’  The people who ‘get’ MS best are other people who have MS, and contact with them can reduce feelings of isolation. They can be found in in-person support groups, offered by your local chapter of the National MS Society http://www.nationalmssociety.org/  and on-line support chats, such as those offered by MS World http://www.msworld.org/

MS can be very hard on couples’ relationships. It’s hard to find the balance between not discussing MS, or discussing nothing else but MS. Couples with MS are challenged to simultaneously change according to the demands of life with a chronic illness, while staying the same, preserving the qualities and shared values that brought you together in the first place. Counseling for couples living with MS can be very useful: http://www.nationalmssociety.org/NationalMSSociety/media/Mid-America/Stay%20Informed/MS-Connection-Summer-0529.pdf (on page two there are tips for finding a couples counselor)

David Rintell, Ed. D.
Psychologist, Partners MS Center
Brigham & Women's Hospital

Here is another answer in response to your question:
You are definitely not alone. There are many people with MS who feel emotionally drained and isolated. The way people react to chronic disease varies from person to person and also changes over the course of the illness. Often these responses, and the responses of those around you, are not particularly helpful and leave individuals more stressed and emotionally drained. 

To be more successful, and this is a process that is continual, you need to find balance and work on enhancing your innate self-efficacy. Self efficacy, as I have written previously, is the perceived belief that an action with achieve an outcome and that you are capable of persisting with this action to achieve this outcome. To quote directly from my previous blog there are several steps required to enhance your self efficacy:

1. Build on your past successes: These successes did not come easily and would never have occur unless you learned to overcome obstacles and failures.  Use this knowledge to help you now.
2. Seek out positive role models: Find someone who has had to overcome similar obstacles. This is the reason why support groups and blogs are so popular.
3. Develop a strong social support network; it is hard to quit smoking when everyone around you smokes. Seek out non-smokers if you want to be successful
4. Reduce stress reactions: To do this you must alter your tendency to negative emotional states and misinterpretation of your physical symptoms as harmful. A person who tells me exercise makes them too tired or sore is a classic example.  Do not misinterpret these symptoms as harmful or a reason to stop. Similarly do not interpret your heart racing or your anxiety over an injection as a sign that taking the medication is harmful. Use this to facilitate performance not limit activities. Do not let these physical stress reactions become debilitating and give up.

People who are healthy or experiencing chronic diseases  often require help in achieving these steps, whether that occurs through social networking groups or groups lead by health care professionals (psychologists and social workers usually).  Remember, this is a process to help you achieve better outcomes throughout your life.  Begin by talking to your doctor and consider getting a referral to a health psychologist. These individuals help you with a process called cognitive behavior therapy designed to essentially help you with the steps outlined above.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
Is there a risk using contrast with getting an MRI? 

Answer:
Typical contrast used for MRI is called gadolinium (a paramagnetic agent that comes across as bright on certain MRI sequences).  This is usually fairly well tolerated, although there is a small risk for a drug reaction, and kidney injury.  The kidney injury is not common, but can occur more frequently in individual with kidney impairment at the time of the gadolinium administration.  Most institutions require a recent blood test (creatinine) to check kidney function prior to the MRI.  It is also not recommended to receive multiple/frequent gadolinium-enhanced MRIs within a short period of time as this may increase the risk of kidney injury (or gadolinium associated nephrotoxicity).  For the typical MS patient, this is not a significant concern.

A. Scott Nielsen MD MMSc
Virginia Mason Multiple Sclerosis Center

Question:
I saw this and wanted to know if it might be credible...http://blogs.scientificamerican.com/talking-back/2015/04/20/could-a-non-prescription-antifungal-become-a-major-advance-for-multiple-sclerosis/ 

Answer:
The use of readily available small molecules to enhance remyelination is very credible and a major area of investigation by pharmaceutical companies and academic researchers. However, none have been demonstrated to perform this function in people with MS as of now.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Question:
I've had RRMS for 5 years. The first year and a half I had 3 relapses requiring IV steroids. Then I was free from relapse for 3 years until November when my mother passed. I cannot get back to my pre- November self, despite 2 rounds of steroids; one in December and one in March. I fear I won't recover any time soon or worse that some of my NEW symptoms such as bladder problems, increased spasticity in my legs, increased exhaustion, ringing ears, cog fog increase especially struggling with word usage and spelling etc. will stay with me. What are the odds of my regaining my pre-November self?? 10%? 90%? Or is it impossible to tell? I'm a big girl I can handle the truth and prefer it. Thank you!!

Answer:
It is not possible to give you an answer in percentages with the information provided, but I can can provide some insights that may help. First, you seem to have at least one risk factor for more rapid MS disease progression; that is, you experienced 3 relapses with 18 months of MS symptom onset. This places you at higher risk, all other information being equal, of developing persistent and significant MS related problems within 5 to 10 years of symptom onset. Independent features that would suggest a greater risk of early problems include age > 35 at onset, a large amount of apparent disease related to MS (the white spots) on your MRI at onset and significant new MRI activity over the first 5 years. For these reasons, you require an evaluation by an MS specialist to determine if you should be treated with a highly active disease modifying therapy for your MS to prevent further worsening and potentially enhance recovery.

This being said, you experienced your most recent relapse almost 6 months ago. While 80% to 90% of individuals will experience their maximal recovery from a relapse within 6 months, it is possible, if not likely, that improved management of the symptoms and problems mentioned in your question will lesson their impact on your every day life. This may include treatment of any persistent depression and sleep disruption, improved management of bladder dysfunction and aggressive rehabilitation through aerobic fitness and weight training. Please discuss all of these issues with your MS specialist and see if you can get yourself on the road to recovery soon.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Question:
I am a 53 year old black male experiencing issues with my legs. This started about 5 days ago. My legs feel week in my quadriceps. I went walking on the trails with my wife and felt like a child. My legs have no strength. What next?

Answer:
You need to see a neurologist. I am assuming you’ve been diagnosed with MS.  If this is the case, the onset of weakness in both legs persisting for more than 5 days is probably caused by an MS relapse involving the spinal cord. A neurologist can confirm if this is the cause of your weakness (there are many other possible causes depending on the circumstances) and determine if you would benefit from treatment with high dose corticosteroids to accelerate your recovery. 

If you do not have a known diagnosis of MS, the possible causes of your weakness are too numerous to mention and an evaluation by a neurologist is more urgently required.

Good luck.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Question:
When/why does one need to start using a cane? I have no significant difficulty with ambulation for more than 30 minutes on a treadmill though my right leg gets fatigued with any incline and I have trouble carrying anything upstairs. I did not consider this a major problem but I have fallen 3 times in the last 6 months with minor injuries. My new neurologist suggested I consider using a cane. I feel that my falls are due more to attention lapses than problems with my legs even though I really try to be careful and pay attention. How would a cane help this?

Answer:
There are many different reasons one might begin to use a cane. One of them certainly is falls. There are many factors that might contribute to a fall, but if you are falling frequently, or having near falls frequently, it might be time to consider the use of a walking aide. Another reason to start using a cane is if you begin to notice a change in the way you are walking. For example, if you are starting to walk with “a limp” it might be time.  If you are starting to have pain in your legs, or your back when you are walking, it might be time to consider using a cane. Another big indication that it may be time for a cane (or other device) is if you begin to rely on walls or furniture when you are walking. This is a huge indication that you are already seeking out support from an external source, so a cane or device would be helpful for you.

Regardless of the scenario, if you have been considering using a device, or if it has been recommended to you; I would STRONGLY recommend you seek out the advice of a physical therapist. There are MANY different types of assistive devices (like a cane) out there, and there are many ways to use them.  Choosing the right one for you, and using it appropriately, is of utmost importance for your safety.  A physical therapist will be able to help decide what device is best for you, and will be able to show you how to use it correctly. 

Additionally, a physical therapist can help determine what is causing the changes in your walking ability, and may be able to help you fix it! It could be muscle weakness, changes in balance, or inadequate flexibility.  So, if you think you might need a cane, let a physical therapist help you!

Here is a blog to read on how to find a physical therapist who is knowledgeable about MS: READ MORE

Sarah Wargo, DPT
Outpatient Rehab
Mt. Sinai Rehabilitation Hospital

Here is My Question:
The fatigue I have is terrible and severely impacting my life! I don't sleep well so I'm sure that isn't helping. What can I do?

Answer:
One of the biggest impediments to getting out and about for persons with Multiple Sclerosis is fatigue.  Yes, fatigue, that bone weary, heavy, melt into the floor feeling that makes you want to stop doing what you’re doing and sit (or sleep).  It affects everyone differently.  It makes anything requiring thought or motion more difficult (which is everything). It doesn’t matter if you are on your own or you have family and friends to help- fatigue is something that needs to be managed for you to be at your best. So let me ask you …

When you go to your medical professional and make this statement they are going to try to tease out whether it is truly MS related fatigue, or something else.  They are going to ask how well you are sleeping, and how many hours you are sleeping.  They may ask about your sleep schedule- some people who are no longer working can get their sleep cycles turned around. So even if they are getting enough sleep, but on an odd schedule, it can leave them feeling tired.  They may ask about what you are doing before you try to go to sleep.  They may ask if you have sleep apnea.  They will ask if you have a history of depression.  They will ask if pain is keeping you up at night.  You see where I am going with this. Just because you are feeling exhausted during the day does not automatically mean it is MS related fatigue, it could just mean you are not getting enough sleep. 

Getting to sleep can be a challenge for many of us- MS or not.  We worry, we think, and we plan.  We just lay there. Here are some ideas…

1. Go to bed at the same time, all the time, even on weekends.  It will help regulate your sleep/wake cycle.
2. Avoid lying down and dozing after dinner.  Dozing will make it harder to go to sleep later. Get up and do some stretching after dinner. Get up and go outside. Get up and get a puzzle out. Play cards or a board game.
3. Develop a ritual or routine.  Do the same things in the same order every evening.  This will help your body know it is time to sleep.
4. Don’t go to sleep with the TV on.  This is for two reasons.  The first reason is that your bedroom should be dark while you are trying to sleep- so no additional lights.  The second reason is (and this is just a theory of mine), beginning at about 1 o’clock in the morning, the television is trying to wake you up.  All of those telemarketers selling stuff are literally shouting at you in the middle of the night to wake you up and get you to buy their stuff.  Don’t fall victim to telemarketers- turn the TV off before you go to bed.
5. Avoid liquids after 6:00 PM.  This is tricky.  You need to drink fluids for your body to function optimally.  Yet I know some of you are not drinking as much as you probably need to due to bladder urgency. If this is you, remember you should optimally be drinking 64 ounces of fluid (8 almost full coffee mugs) per day.  If you are worried about liquid intake and sleep, load those fluids early in the day- the first 32 ounces by noon, the second 32 ounces by 5:00.  Then you have the chance of getting all of the fluid out of your system before you try to go to sleep.
6. Try to not be really busy before bed.  Being really productive can make it harder to relax when the time comes to go to bed.

Here are some sites that I think have good information about going to sleep…
http://www.helpguide.org/articles/sleep/how-to-sleep-better.htm 
http://www.nhs.uk/Livewell/insomnia/Pages/bedtimeritual.aspx 

And if you are losing sleep because your kids can’t go to sleep…
http://www.parenting.com/article/how-to-get-your-child-to-sleep-really 

Lori Kostich M.S. CCC-SLP, MSCS
Mandell Center for Multiple Sclerosis Treatment and Research

Here is My Question:
I was on Tysabri for two years and then switched to Tecfidera. After 7 months on Tecfidera my WBC count dropped to lymphocyte 3500; absolute 795; cd3 562; cd4 508; cd8 55. All LOW as in half of the lowest number on the scale. My doctor said to stop Tecfidera and that I NEED to be back on Tysabri. If the cd8 number is the wbc that holds off the JC virus, then wouldn't it mean that the barn door is now wide open? Why would he put me back on a drug know to have a greater risk of PML with prior immunosuppressant especially when my blood test reflect a major suppression? Plus being on Tysabri for 2 years and feeling like I dodged the PML and rebound by exiting the drug at the appropriate time. He retested my JC virus. Waiting for results. He feels that being off Tecfidera for 30 days will give my immune system time to get normal and I can restart Tysabri with no risk of PML pending a negative or low number on JC virus test. I don't want to start Tysabri again, but I'm not seeing any other options?? Forget CRABS. Made me very ill. Hoping for a long term solution without PML risk. 

Answer:
This is a common concern facing patients and physicians, so let me take some time to address it today. As I have stated in previous responses, there is really no way to totally eliminate the risk of PML. 

There are or I suspect there will be reports of PML with all highly active therapies for MS, although the risk varies dramatically between different treatments. The highest risk occurs in JC virus antibody positive people with MS receiving Tysabri for over 2 years. Within this group, the risk appears to be higher in those with JCV antibody index values greater than 1.5. 

Unfortunately, the risk factors for the development of PML in patients on therapies other than Tysabri remain unclear. For instance, we do not yet know if JCV antibody results are a risk factor for PML in patients on therapies other than Tysabri. It is clear that prolonged lymphocyte depletion is a risk factor for PML in multiple clinical situations, but guidelines for the use of this information to monitor different treatments is not available, and will likely differ between treatments depending on their mechanism of action. 

For instance, Tecfidera actually depletes lymphocytes, particularly CD8 positive lymphocytes, and there is a general recommendation to stop treatment in individuals with prolonged depletion of absolute lymphocytes counts below 500 to 600. Yet, there is already a report of a patient on Tecfidera developing PML with a less severe reduction in lymphocyte count, prompting concerns related to the degree of lymphocyte reduction that should prompt patients to discontinue therapy. 

Lastly, lymphocyte depletion tends to persist for longer periods after discontinuation of Tecfidera compared to other agents. 

So how can you use this information to make your treatment decision?

1. Given your reduction in absolute lymphocyte count (795) and CD8 count (55) and your elevation in CD4/CD8 ratio (> 5.0) you should consider stopping Tecfidera if the reductions worsen over the next few months. It is probably too early to determine if it is necessary to stop Tecfidera now. It is the persistence of lymphocyte reduction over time that should be a concern.

2. Restarting Tysabri treatment depends on a number of factors but should probably be avoided if you are JCV antibody positive (esp with an index > 1.5) and if your absolute lymphocyte count and subsets have not returned to normal after stopping Tecfidera.

3. Gilenya may be a reasonable treatment option for you. The risk of PML is exceedingly low and the drug itself only sequesters lymphocytes without actually depleting them. For instance, it is very common for the measured lymphocyte count to drop below 500 in patients on Gilenya, but this drop is not associated with a significant increase in the risk of any infection. I would certainly consider a trial of Gilenya before returning to Tysabri, if you are JCV antibody positive. Again, I would not start Gilenya until your absolute lymphocyte count returns towards normal (over 1000).

4. Depending on your prognostic features, Aubagio may be an alternative.  This is generally well tolerated and to my knowledge there has not been a report of PML developing in a patient on this treatment.

I am not recommending any particular treatment, but aim to inform you of your options so that you can discuss what is best for you with your physician.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego


PLEASE NOTE:  The information/opinions on this site should be used as an information resource only.  This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment.  Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.

Question:  I am 22 years old and have had multiple sclerosis for 5 years.  I am taking Avonex.  Can I have the laser treatment for my eye sight? Thank you for your valuable time.

Answer:
You can read our previously written blog about this topic HERE 

Question:
What can I do to repair the myelin sheath?

Answer:
There is nothing at present proven to restore myelin more efficiently than normal repair mechanisms. At present the key to myelin restoration is rapid and complete cessation of inflammatory activity although it remains possible that some forms of inflammatory activity may actually promote demyelination and repair.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
I am a 50 yr old female who was diagnosed with Relapsing Remitting MS the month before I turned 50. My initial symptoms that lead to my diagnosis included numbness on the left side of my head, face and mouth, blurred vision in my left eye, complete loss of hearing in my left ear and lack of balance when walking. A brain MRI showed 4-5 lesions. Six weeks after the initial onset of symptoms, as my initial symptoms were subsiding, I began having sporadic numbness in my hands, feet, arms and legs. Most of my initial symptoms are gone now however the sporadic numbness has continued for approximately two months now. My questions are 1) Would the new symptoms that began 6 weeks after the initial symptoms be considered a second occurrence? 2) Given my age at diagnosis is it possible that I may have Primary Progressive MS not Relapsing Remitting MS? 

Answer:
We arbitrarily define a relapse as the development of new or worsening symptoms consistent with inflammatory demyelination lasting for over 24 to 48 hours in the absence of a fever, infection or alternative cause AND during a relapse free period of at least a month. By this later time line criterion, your second set of symptoms would be considered a possible relapse if all other criteria were met, but the sporadic and fleeting nature of the symptoms suggests that perhaps we would not consider these later symptoms a relapse. Regardless of age relapsing forms of MS are usually more common than primary progressive MS. It is just that primary progressive MS becomes increasingly common in older age of onset patients.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
Recently I read that many lesions in MS are invisible. Among other things, it said most lesions seen in the MRI of the brain do not correlate well with the problems the patient has. "A good doctor will not try to tell you different". My neuro told me on my last visit "well, I would say from your history and where your lesions are, you won't have any difficulty walking"! Now, I know that should be good news, but I felt "let down", as that has never been my concern or problem. My problems have all been cognitive. I "forget where I'm going when driving down the road", or "my children tell me they already told me that several times, I see things (words and numbers) wrong, my hearing and sense of smell is affected. It has been very difficult and I think I felt "my doctor doesn't even know me!" With all due respect to those with difficulty walking, if I were given a choice (of course we never are), I would actually choose the wheel chair over "having all my 'faculties' about me". 

It is so frightening when you are just 2 blocks from your home and can't remember how to get there! Driving home and "suddenly can't remember where you are going". I could go on, but I won't bore you with more. I'm sure you get the idea. My question is, I am going to be seeing my neuro May 5th. How can I make him understand this? I believe I had a "flare" recently, as the right side of my head plugged (for lack of better term); I am left with much worse ear noises and now I have this strange smell that comes and goes! Some of my cognitive issues are now back or worse. He never addresses my cognitive issues and I feel he doesn't care about that. As long as I can walk, I guess I'm ok. I'm afraid he won't take me seriously. I have printed off your article on smell and hearing and the one on "hidden" lesions. I wanted to know your opinion on this? I sometimes wonder if I have other lesions (I have actually, only had 2 MRIs in the beginning, with and without contrast), plus I had a spinal tap that all said I had MS. But shouldn't I have had another MRI since I have been on treatment? I was diagnosed in 2012. He just looks at my old MRI's. I just don't feel I'm taken seriously because I am mobile. I once thought, that's what MS is. I now know differently. I guess that's why many refer to it as the "invisible" disease. Thank you for listening. I just want my neuro to understand "me".

Answer:
Please refer to a blog I wrote over a year ago called, "Finding a doctor for your MS.” Your question really gets at the heart of the doctor-patient dynamic. The patient wants to know what specifically is causing their problem and what if anything can be done about it. The doctor in turn tries to answer your questions in a way that will, “do no harm” , but provide enough information to assist and reassure, if possible. Sometimes doctors will point to something positive to deflect from your single minded concern about another issue. This is often not a good strategy unless your concern is adequately addressed. This is commonly the case in people with MS primarily concerned about hidden symptoms for which their is little objective evidence. 

There are two good strategies to take with your doctor in this circumstance:
1. Ask him or her, “what is causing my concerns with cognition, if it is not directly related to my MS?”  Remember, research suggests that when one’s perception of cognitive difficulty is worse than what other’s observe, there are often other factors causing your perception of cognitive impairment including depression, anxiety and stress. This would be good news as these problems are very treatable
2. Ask him or her for an independent second opinion as to the cause of your cognitive difficulties. This kind of independent consultant should have no stake in maintaining an ongoing doctor-patient relationship and may be more inclined to give you the straight scoop, so to speak.

Good luck

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego