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Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
Here is My Question:
I was diagnosed with RRMS in 2001. Was recently taken off Copaxone because it seemed to have stopped helping. I have daily symptoms...never-ending. My question is about fatigue. Do most patients feel the extreme fatigue with activity? Simple things like washing a dish, brushing teeth, bending over or carrying groceries can wipe me out and even make me a little lightheaded. I notice I sleep more during the day, but I force myself to keep going. I've had all the cardiac tests which seem to be normal for my age (63). But I just can't seem to do much physical work anymore. I tried PT and water aerobics. The exercise makes things worse. I also have Graves, IBS, Gastritis, osteoarthritis and tendinitis. Also degenerative disc problems. Thanks so much. Appreciate any advice or suggestions. Answer: Your experience with fatigue is common among MS patients. Thankfully, we have lots of information on this site to help with the management of MS related fatigue. Just use the search feature to find the information. However, before you begin your search for answers remember the following: There is no single solution to fatigue; trying something like an exercise program, deciding that it is not helpful and discarding it is a mistake. Most of these strategies will require months of hard work and adjustments to find a successful solution. These solutions always require a combination of management strategies that include most of the following:
You should discuss the comprehensive management of your MS related fatigue with your MS team Rip Kinkel Here is My Question:
Are there any studies on the effect of Methylcobalamin on MS symptoms? Answer: I do not know of any studies related to the specific use of methylcobalamin supplements to treat MS symptoms. Cobalamin supplements, usually cyanocobalamin or hydroxycobalamin, are often taken by MS patients with anecdotal reports of improved energy levels. There are some studies of methycobalamin for diabetic neuropathy and neuropathic pain but the results are mixed. Vitamin B12 supplements are most commonly cyanocobalamin because this form is easier and cheaper to make. Hydoxycobalamin is probably a better supplement but more expensive. Hydroxycobalamin is actually the treatment for cyanide poisoning because it binds and elements cyanide rapidly and effectively. It used to be the preferred supplement in smokers as well. Rip Kinkel, MD Here is My Question:
Is Rituxan being used in patients who have been taken off Tysabri because of a high JC index and are they at a higher risk of developing PML? If not why not? Answer: I have addressed the use of Rituxan in patients taken off of Tysabri in prior blogs and in responses to prior questions (you can use the search box in the upper right corner of this page to read these prior blogs). My thoughts on this issue are as follows:
I hope this answers your question. Remember, my response is based on the best available current information. As we begin to use rituximab and related drugs in more and more MS patients, we will be able to determine if these assumptions hold true. Rip Kinkel 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. Here is My Question:
I have been diagnosed with MS and have lost bladder control and the ability to achieve erections. Can I get back bladder control and erections through kegel exercises without medication? Answer: Kegel exercises strengthen pelvic floor muscles in men and women to help improve control of urination and there are some who believe the exercises may improve erections in men. Without knowing the details of your case, it is hard for me to know if Kegel exercises will help, but they certainly can’t hurt. I suspect that you, like most people with MS, need to do Kegel exercises to strengthen your pelvic floor muscles as much as possible and judiciously use appropriate medical therapy for these problems. You can find instructions for learning to do Kegel exercises on this web site CLICK HERE. If you can not learn to do Kegel exercises, discuss this further with your MS specialist or urologist. Rip Kinkel Here is My Question:
My last visit to the neuro was extremely odd. He did his usual exam with some hummmm, then looking thru the files. made me walk a fairly far distance. Never did that before...usually just in the room to the door and back to him. Said I had clones and forget the name, but my hands were blue and cold. Starts with an R. (I remember some things and forget a lot ) Then he sent me for an MRI. Just had one 6 months ago. He said to start thinking about something other than Rebif. When I was leaving he scheduled me for a visit in 2 months. I usually see him every 6 months. I went back with my MRI. He said that Rebif was not helping me and wanted me on Tysabri. I asked if something was wrong and he said no, just time to change and the quality of your life was not being helped by Rebif. I also now have a tumor. He showed me the lesions and the tumor but did not comment. I DO feel much worse and walking is almost impossible but he said no. Is he trying to keep my hopes up? Answer: I try my best not to read other people’s minds, and this is my advice to you. Direct communication is the best way to resolve your current concerns. There are really three possible explanations for the situation you describe in your question:
Sometimes you just need to rip off the band aid and get the information up front. I would suggest that you request a meeting with your neurologist to discuss this anxiety provoking episode face to face. You may even want to send him/her the exact question you sent to me on this web site. He/she may be totally unaware of your reaction and feel that their is no particular cause for alarm. In this case # 1 is the best explanation. If there are causes for concern, put your neurologist at ease and tell him/her you are prepared for a open discussion. Make sure you bring someone with you to take notes and bring a list of prioritized questions, since it is often difficult to remember details of a discussion or forget to ask important questions when you are upset. Tell him/her you want to know the options; if there is significant uncertainty expressed by your neurologist, respectfully ask for another opinion to help him/her out and to resolve these uncertainties. I hope this helps Good luck Rip Kinkel Here is My Question:
My 5 year old daughter has MS. Her neurologist called us today to state that the results of her recent MRI were that she has one mildly progressing lesion. She said it is one of her old lesions, and it is not enhancing. What does this mean? I am scared out of my mind that we have a hospital stay in our near future. Thanks for the help. Answer: I can feel the anxiety in your question and have heard similar concerns from patients and family members surrounding their interactions with doctors. The real issue is not the MRI result but the way this information was transmitted to you through a presumably brief telephone call. This is one of the reasons that I will not do MRI reports over the phone unless the person lives so far away that a visit is not possible. The doctor may have even expressed reassurance during the phone call, but you only heard the message about the “mildly progressing lesion” ; this understandably created questions in your mind after the conversation was over. Now I have no idea about the details of your daughter’s case or what your neurologist meant about a “mildly progressing lesion.” For all I know, this was a meaningless comment from a radiologist’s report or was meant to express reassurance in a situation that was a reasonable cause for concern. Either way, you need and deserve more information, such as: 1. What exactly is the implication of a "mildly progressing lesion” in my daughter’ case? 2. Is she at risk for a symptomatic flare-up in the near future that would require an admission to the hospital? 3. Should there be a change in her treatment based on these MRI findings? If you can’t receive reasonable responses to these questions, I would suggest that you ask for another opinion. Good luck - Rip Kinkel, MD I got a 5-day course of solumedrol and the migraine kicked in the 4th day. I have been off steroids for 10 days. The migraine is getting better but slowly. If I knew what caused it, I might know better how to treat myself. Are the blood vessels affected by steroids? What is causing this?! I don't want to take this stuff ever again but I know I'll probably have to so I want to be armed with a little more knowledge the next go around.
Answer: Pinpointing the exact cause of your migraine would be difficult; my suggestion would be to talk to your doctor about starting a migraine prevention medication/remedy at the start of treatment the next time you need to take high dose steroids -Rip Kinkel, MD Here is my question:
Can you break down this part, "The metabolic effects and the effects on gene transcription and protein synthesis are more prolonged..."? What does that mean? I have read conflicting things about how soon the body gets back to producing a regular amount of cortisol. In my particular case, I took an Adrenal Stress Index Panel a few months prior to IV Steroids. My test results showed that my adrenals are not functioning properly on their own (producing too much cortisol at night and in the morning and dropping drastically around noon.) If the adrenals are not producing normal levels of cortisol (at the right times) prior to IV Steroids, is it possible that it will take the body longer to recover from the steroids? Answer: Cortisol levels follow a circadian rhythm in humans with highest levels in the morning, typically around 8 am, and lowest levels around 12 to 4 am. Darkness causes the hypothalamus and pituitary to shut down the release of the peptide that stimulates the release of cortisol by the adrenal glands. The range of normal cortisol levels at different times of day is very large and the circadian fluctuation of cortisol levels can vary significantly between individuals. One of the more common reasons for a disturbance in this hypothalamic-pituitary-adrenal response is chronic stress and depression. Steroids have dramatically different effects with short term and chronic use. The most common short term side effects are behavioral alterations including anxiety, restless, hyperactivity, insomnia or even mania and less commonly depression and withdrawal. Rarely, steroids cause a full blown psychosis with delusions, hallucinations and thought disorder. Recovery is fairly rapid with short term use and the reason we only use these short term treatments at present to treat MS. But even patients on short term use can take more than 3 weeks to recover from cognitive/behavioral effects like depression. Even with the widespread treatment of many conditions with steroids for over 50 years little is known about the risk factors for these psychiatric side effects which occur in about 30% of treated patients. We do know that higher doses are more prone to cause psychiatric side effects but we are not able to predict these side effects based on baseline cortisol levels, history of psychiatric disease or even prior response to cortisosteroid treatment. Long term use of steroids can have similar effects but also alters metabolism and even your appearance. Thankfully, we no longer see MS patients coming to clinic on chronic daily high dose steroids with the typical cushinoid appearance of thinning hair on the head, hirsuitism (women), puffy cheeks, a buffalo hump on the back, thin glistening skin, easy bruising and brittle bones. -Rip Kinkel, MD Here is My Question:
Hello, I was diagnosed with relapsing remitting MS about 11 years ago. I am 36 years old. My MS was quiet until 2 1/2 years ago when I had my twins. Since the it has been multiple courses of steroids, switching from Avonex to Copaxone to Tecfidera. Now things have quieted down some, but I have a question. I developed bursitis in my right knee. Had the fluid expressed after it continued to get larger. Figured I knelt on something and forgot about it. But when I saw my neurologist, I happened to mention it and she began questioning it. We agreed that hopefully I had just knelt on the kids toys. Not two days after I saw her my other knee developed bursitis. It also continues to get larger. They advised me to wait as long as possible due to risk of infection.
Interested to hear your opinion and if you have seen this connection before. Thanks. Answer: I would suggest seeing a rheumatologist or someone who knows something about bursitis. I’m a neurologist and can tell you that I really don’t know much about bursitis. It is a very common disorder so it is unlikely you need to consider this a possible side effect of any particular treatment or MS. Rip Kinkel, MD ![]() Here is My Question: While on Tysabri, I asked my neurologist if I could donate blood and he advised against it. I'm now on Tecfidera, so can I donate blood now? Answer: Your neurologist is correct; Tysabri is a monoclonal antibody that binds to a receptor on white blood cells; there is a good chance that some of the bound Tysabri would be transferred as part of the blood donation, although it is doubtful that this would be harmful. Tecfidera is rapidly metabolized to monomethyl fumarate and will be completely gone by the time the blood donation is prepared. I do not think there will be any problem donating blood on this treatment but the blood donation site may have separate rules. Check with them first; remember, it wasn’t long ago that MS patients were totally prohibited from donating blood. The red cross took MS off the list of exclusionary diagnoses 5 to 10 years ago, but some donation centers may still prohibit MS patients from donating blood. Good question. Rip Kinkel Here is My Question:
How do I manage the side effects while on IV steroids and then the symptoms that come with steroid withdrawal? Namely migraine. Is it known what is happening in the body to cause this migraine? Are there western and eastern methods to draw upon for treatment? Answer: In most of the world MS patients are given 1000 mg of methylprednisolone once a day for 3 to 5 days by IV infusion (these are doses 10-20 times higher than doses used for allergic responses, asthma, transformed migraine or rheumatoid arthritis to name just a few other conditions treated with steroids) and no oral prednisone taper is provided. Oral prednisone tapering after IV steroids is a tradition that seems to be unique to the United States. To my knowledge there is no evidence that the short tapering dose of oral prednisone after the high dose IV infusions prevents withdrawal symptoms. In fact the vast majority of patients have no problem going without a taper and prefer to avoid the further side effects of corticosteroids that accrue with the addition of an oral prednisone taper. In my experience the headaches that can occur with a prednisone taper are one of the problems with these tapers. Unfortunately, the best solution in this situation is to temporarily increase the dose of the prednisone and taper the dose more gradually. You can also get headaches with the high dose IV infusions but they tend to be short lived and caused by infusing the drug too rapidly. I tend to prescribe a tapering course of prednisone for only two reasons:
Please see my prior blog on treatment of MS relapses with corticosteroids CLICK HERE Rip Kinkel, MD Question:
Do corticosteroids act in the body by increasing cortisol production? If so, is it known how this increase "shuts down" the immune system to stop the active lesions from continuing? How long after steroid use do the cortisol levels in the body remain elevated? Does this affect your body's future response to stressors? If stress causes inflammation, and MS exacerbations, then how does a substance that increases your stress hormone cause the exacerbation to stop? Answer: Corticosteroids are used in many different formulations and dose regimens for different conditions. The large doses used to treat MS have profound but relatively short term effects on immune cell function, vascular permeability and neural function. These effects are dose dependent and there is evidence that the higher doses used to treat MS are required to adequately treat significant MS relapses and suppress recurrent inflammatory responses in the brain and spinal cord for a few months after treatment. Corticosteroids do not increase the natural production of corticosteroids by your adrenal gland; in fact prolonged use for many weeks will suppress the ability of the adrenal glands to make steroids. This is the reason that steroids must be tapered gradually in patients who have been on regular (daily or every other day) doses of steroids for many weeks; this tapering is not required for short term treatment. The half life of oral or intravenous corticosteroids is relatively short and cortisol levels are normal within hours or at most a few days depending on the formulation. The metabolic effects and the effects on gene transcription and protein synthesis are more prolonged but are generally undetectable within a few weeks of stopping, again depending on dose and duration of treatment. Increased corticosteroid production is a natural response to stress of various types; the metabolic effects of this stress response are beneficial as long as they are not too prolonged. -Rip Kinkel, MD
![]() A question came in about flushing that is very similar to a question that we answered back in March...so we are posting it again. Happy reading! Question: I'm new to Tecfidera and have been on it 5 weeks. I seem to be managing my side effects well but it is making me hot. I am taking an aspirin in the morning and it is helping with the flushing but I'm still hot all time, especially at night. How do I regulate my body temperature? Answer: The first thing you should do if feeling hot is determine if you actually have a temperature. If not then you should see if other medications you are taking could be contributing; these other medications could include anticholinergic drugs like oxybutynin (Ditropan), detrol, vesicle and toviaz used to treat bladder control issues. You may not be able to get rid of them but you may be able to decrease the dose. All of these drugs decrease your ability to sweat and can make you feel hot. If you are not able to get rid of any contributing medications and still feeling hot or flushing, ask your physician about taking a baby aspirin in the morning and another at night if necessary. If this doesn’t work, ask about taking a regular dose of aspirin (325 mg) in the morning and at night. I would suggest taking enteric coated aspirin like ecotrin to avoid hurting your stomach. Hopefully, you will be able to get rid of the aspirin or take just one aspirin after 3 months. Good luck and make sure you check in with your doctors about this problem. --Dr. Kinkel 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. We have received many requests from readers that they wish to receive emails when there are new posts. However, since we post things almost every day we don't want to innundate you with emails! If you wish, please click the "like" button ABOVE and you can follow our new postings via Facebook. If you aren't on Facebook, let us know and we will see what we can do to make sure you get notifications as you like.
![]() Jeffrey Dunn, MD, FAAN serves as Professor of Clinical Neurology and Division Chief of Clinical Neuroimmunology in the Department of Neurology and Neurosciences at Stanford University (Stanford, California; USA). His research efforts includes collaborative translational research to identify biomarkers of MS and NMO disease status and therapeutic targets, and the clinical phenotypes of MS according to ethnic heritage; and he has served as Principal Investigator in more than 20 clinical trials of new and emerging immunotherapeuticals for MS. Dr. Dunn is an elected member of the Executive Committee of the MS Section of the American Academy of Neurology. He has been awarded the prestigious Henry J. Kaiser Family Foundation Award for Excellence in Clinical Teaching, and the Arthur Bloomfield Award in recognition of excellence in the teaching of clinical medicine. Dr. Dunn will be contributing to the HealthCare Journey website. Please welcome him to our team! Here is My Question:
I went to the doctor yesterday. I have been on Copaxone for about 3 years and two years before that on Avonex. My MRI had some changes in brain and thoratic lesion. Dr. did not receive entire report while I was there. She advised maybe taking me off Copaxone because of no exasperation on med. She also wants a cognitive study done. Then said something about progressive MS. My past diagnosis was RRMS. Answer: I am not exactly sure what question(s) you are asking without more information. Are you asking if and when you should consider stopping a medication? If this is your question, the answer is complex and depends on the your individual circumstances. I would recommend discussing this further with your MS specialist. -Rip Kinkel Question:
I am having a baclofen pump put in on June 24th. It is under general anastisa (sic). Will that cause an MS flare up and what should I do if it does? Answer: The general anesthesia should not cause a flare up of your MS. Most people recover promptly from this procedure and are able to go home the following day if there are no complications. You will need frequent visits to titrate the dose of intrathecal baclofen; you will also need physical therapy or even a short rehabilitation stay to get the most benefits from the reduction in your spasticity. You should discuss this with your current doctor. Take care. Question:
My husband has started experiencing bad foot pain...feels like his feet are on fire or stepping on needles. He has been diagnosed with relapsing MS since Nov 2009. Will having a holistic provider help him? He has constant back pain as well. Would you be able to see him using military tricare insurance? He is medically discharged due to his MS... Answer: I am sorry to hear about your husband burning pain in the feet. This type of neuropathic pain is common and treatable. If you live in the San Diego area I would be happy to see him. I am fairly certain that we accept tricare insurance. Feel free to call Angie or Shivon at 619-543-3500 to learn how to get in to see me in the MS Clinic. Rip Kinkel MD |
PLEASE NOTE: This information/opinions on this site should be used as an information source 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.
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