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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 recently diagnosed with MS and want to stay as active as possible but the fatigue is really bumming me out. Does anyone have any advice on how much to push myself? Answer: Good question. Here are some previous blogs that address your question: http://www.healthcarejourney.com/physical-therapy-blog/taking-care-of-yourself-staying-active-with-multiple-sclerosis http://www.healthcarejourney.com/physical-therapy-blog/taking-care-of-yourself-staying-active-with-multiple-sclerosis Here is My Question:
I spent July and August in the hospital. I don't remember much but between my husband, children and the doctors I know most. I fell and went unconscious at a nursing home we were showing my 94 year old Dad. They called 911, I was taken to nearest hospital and they said I must be taken to hospital in Toledo, Ohio. Long story short, they said I had couple of strikes and at least 2 operations. One vein had "bulge" on it and they had to fill it with wire coil. I have MS, btw, which they "said" had nothing to do with this. It is very frightening to think about, as I was "told" I was very luck to come home. The doctor told one of my daughters, only about 50% of people make it to the hospital alive. I had had a MS just weeks before this happened. Why didn't it show up when they said that I probably had it for "some time"? I was completely out of it in the hospital. I did not talk or move by myself. My son from state of Oregon came back and slept in my room for a whole week I don't remember him at all. I don't remember any of my visitors. Just wanted you to know how bad it was. I came home and had to have therapy for a month or 2. My memory is my biggest issue. My concern is..."can this happen again"? That's what scares me. My mother had diabetes, had multiple strokes and finally the "big one" that finally took her life. I have always been petrified of that. I want to stop worrying about this but I also want the truth. If it wasn't my MS, then what is it? I will say this: they always have trouble getting blood. They said I have very small vessels and they roll. Its generally never less than 5 or 6 tries before they get it. I'm just wondering if that can be a part of my trouble? I have an appt with my original neuro Dr. Brendan Bauer this month. I have plenty of questions for him but since he knows you, thought it might help having your opinion to take with me. Well, thank you for listening! I really do appreciate it. BTW I am 67. I also want to know what I can do, if anything, to try to prevent this from happening again? Answer: It is hard to understand what actually happened to you from the description you provided. It is very rare for multiple sclerosis to cause loss of consciousness. It sounds as though you may have experienced a subarachnoid hemorrhage and they coiled an aneurysm. Dr. Bauer is an excellent neurologist so make sure he has all of the records from your hospitalization. I'm sure he will be able to explain what happened in far better detail. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Check out our latest health and wellness podcast and video on a NEW type of therapy for multiple sclerosis called HEALING LIGHT GUIDED IMAGERY! Here is my question: I have been reading about the impact of the 'gut' on MS. Are we really what we eat? What is your opinion about this and what can I do NOW in regard to eating that will help my symptoms? Answer: What we eat has a significant impact on our health, regardless of whether we have MS or not. Here is a blog I wrote a while back that should answer your question: READ BLOG Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Have you taken advantage of this yet? Do it! It is FREE and you can have your images at your fingertips ALWAYS and from ANYWHERE.
No gimmicks, no tricks, which is why you need to take advantage of this! For once, no charges or paperwork and it will really help you in the future! What are you waiting for????? SHARE THIS WITH ANYONE THAT HAS MS! CLICK HERE TO STORE YOUR IMAGES FOR FREE Here is My Question:
If you get a lumbar puncture for a diagnosis of MS do you have to be in a relapse for it to be positive for O bands? Or would it be positive if you were in remission? Answer: Spinal fluid Oligoclonal bands are present at all times once formed. The amount formed may fluctuate over time and with certain treatments but they tend not to disappear. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I have been given Laroxyl 40mg liquid bottle and use 10 drops at night. What do you think of this medicine for nerve pain? I have been taking it for 12 days and hope it will work as I have tried many medications. My new neurologist looked at my history and without hesitation gave me this med.My history is that I get all side effects.For now I have no side effects,infact some improvements.what do you think?thank you in advance Answer: Laroxyl is a good medication for central neuropathic pain. We do not have this brand in the United states but we have an identical medication called amitriptyline. We generally give this medication at bedtime. Good luck 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 55 year old female, with RRMS. I was diagnosed 5 years ago. I do walk with a cane or a walker when I have to walk a longer distance. I have recently started an exercise program with a physical therapist and it has been life changing, I feel so much stronger! On my days off of physical therapy I walk to keep the momentum going! This past weekend I walked much further than I should have, I tried to push myself and "muscle through" the pain and fatigue that I felt in my right leg, I just kept going. As a result, I have been extremely exhausted all week, my balance is off and I am just not walking or feeling very well at all. My question is what kind of damage have I done to myself and is it possible to increase my walking distance or is it best to try to maintain what I can do now? Thank you so much for your time!! Answer: First of all, you are doing everything correctly and should continue to work with your physical therapist to improved your strength, endurance and balance. You will experience set backs from time to time. When this occurs it is best to try and figure out if there is another reason besides, “overdoing it.” I would not expect excessive activity to create persistently diminished performance for more than a few days. Other potential reasons could include interrupted sleep, a urinary tract infection that is not causing the usual symptoms (e.g. no burning with urination or pelvic discomfort), a new medication, warmer than usual temperatures, an injury or even a minor relapse. If no other cause is found you should generally rest for 2 days (continue stretching but no heavy activity) then restart your rehab activities at 50 %. Depending on how you feel, increase back to your usual level of activity over a week or two. Your physical therapist should be able to help you with this process and should be able to determine if it is time to return to your neurologist to look into other causes. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Recently there has been issues put forth by the FDA that patients receiving gadolinium may not be clearing it from the body. Is this something to be concerned about? Answer: Multiple studies indicate that certain gadolinium contrast agents are deposited in certain regions of the brain after multiple exposures during MRI scans. More importantly, this occurs even in people with normal kidney function and intact blood brain barriers. There is no evidence at present that these deposits of gadolinium have a detrimental effect. The FDA is actively investigating this issue. Until we have further information regarding the long term safety of gadolinium contrast agents, it is important to carefully consider the necessity of using this agent for specific imaging indications. For MS, it is my opinion that non-enhanced MRI is adequate for many follow-up scans as long as high resolution volumetric studies are obtained and computer assisted analytic technologies are used to compare scans over time for the presence of new or enlarging lesions. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
A question from the mom of a pediatric patient who receives his DMT as injections: Why can't these injection meds be given via an Intrathecal type pump? The whole device is made to dose our meds at whatever needed rate. It only has to be 'refilled' once a month in most cases. What is it about these meds the kids are taking that can't be dosed out this way? Answer: For interferons, the original trials were indeed intrathecal, but glatiramer acetate has not been tried that way. Regardless of their potential to work via an intrathecal route, the need for an invasive procedure and the risks associated with these pumps are the reason injections are preferred. While not as pleasant, they are far safer. Benjamin M. Greenberg, MD, MHS Director, Transverse Myelitis, Neuromyelitis Optica and Pediatric Demyelinating Disease Programs Director, Neurosciences Clinical Research Center UT Southwestern Medical Center Childrens Medical Center Dallas, Texas Have you read our patient blogs lately? Read Emily's latest blog about letting go and multiple sclerosis...READ MORE
And if you would like to write blogs for us, please contact us at [email protected] Here is My Question:
I was just diagnosed with RR MS and my doctor is talking about treatment with one of these medications: Tecfidura, Aubagio and Copaxone. In reading about these treatments on your page - my understanding is that they are only to prevent me from getting worse/relapsing, but they won't help me to feel better day to day and with side effects - I may feel worse? Is this correct? Thank you. Answer: It is always important to establish appropriate goals when you start a treatment for your MS. This helps alleviate some of the concerns that you’ve expressed in your question. But let’s discuss some concepts first. Your question seems to imply that if a treatment doesn’t make you feel immediately better, it is not worth taking the treatment. This could not be further from the truth. Many of the persistent symptoms you are experiencing exist because the disease has been active and at least partially damaging your nervous system. This process is likely to continue without treatment. We tend to view symptom management and disease management separately. Symptom management involves a number of approaches (including physical therapy, orthotics, aerobic exercise, progressive resistance training, dietary adjustment, cessation of smoking and other vices, elimination of offending medications, judicious use of some medications to modify symptoms, treatment of co-morbid conditions, meditation, yoga, acupuncture etc) used to modify if not eliminate a particular problem. Disease management is designed to prevent further damage and symptoms from appearing. When you do pick a disease modifying therapy you need to really consider three phases of treatment separately: Phase I: This is the first 1 to 3 months of treatment when you are most likely to experience potential side effects of the treatment. Some treatments like Tecfidera tend to cause side effects early in treatment (4-6 weeks) and then the side effects diminish, if not disappear in most patients. Other therapies like Copaxone may continue to create the same side effect as long as you remain on treatment, notably injection site discomfort and skin reactions. Aubagio can cause hair thinning early in about 1 in 10 people, but this typically resolves within 6 months. Knowing the time course of these side effects and how to manage them is extremely important for making treatment decisions and dealing with whatever side effects emerge. Phase II: This phase generally goes from month 3 to month 18. By this time you should know if you will be able to tolerate the treatment . Now you need to find out if the treatment works. Your neurologist should obtain a new baseline MRI scan of the brain 3 months after starting the treatment (if you plan to continue the treatment). Subsequent MRI scans 9 and 18 months after starting treatment (some neurologists do these scans 12 and 24 months after starting treatment ) can be compared to this baseline scan to see if the treatment is eliminating MRI related disease activity. If the treatment is not eliminating new MRI disease activity, it is probably time to consider a new treatment. Relapses during this time would also be a reason to consider an alternative treatment. Phase III: This phase goes from about 18 month to 36 months. During this time you will be trying to determine if the treatment is continuing to eliminate MRI activity and relapses but, more importantly, you want to know if the treatment is limiting the development of brain atrophy and worsening disability. This usually requires your doctor to use special quantitative clinical and imaging measures. It is also during this phase that the rare long term risks of some of the more powerful therapies (alemtuzumab and Tysabri) emerge. Your doctor must be vigilant and monitor you for these risks at a time when you are feeling quite comfortable with the therapy. I hope this helps with your decision process. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I was diagnosed with relapsing remitting in 2000 and had symptoms for many years even before then. I was on Avonex for 15 years, with great results and minimal changes in lesions until I did a silly thing. I went on an overseas vacation and did not have any Avonex for that whole time. I went back on it as soon as I got home, but the next MRI I had my neuro said there had been changes so he put me on Plegridy. I feel really crappy, fatigued and dizzy, and my left leg is like a lump of clay. I'm really scared and want to go back on Avonex. Can I just go back on Avonex quite safely? Answer: There is no problem switching between Plegridy and Avonex. I have had several patients switch to Plegridy only to decide to switch back to Avonex because of side effects. All of them did well Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego #multiplesclerosis #Plegridy #Avonex Here is My Question:
If a person has an attack (numbness and tremors) about a year and a half ago but then the MRI is negative and neurological exam is normal, what is the chance that it could turn into definite multiple sclerosis? In May they repeated the MRI for brain and it was normal. I am frustrated as I know this is MS! My blood work was all normal. Why do MS doctors say that MRI can determine whether it is MS? Answer: It is very rare for an MRI of the brain to remain normal for prolonged periods of time in definite cases of MS. There is limited data on the topic, but most people with MS develop brain abnormalities within 5 years, if not sooner. These people also tend to experience a more benign form of MS. There are many conditions that causes symptoms and findings similar to MS and there is no reason to rush into a diagnosis. The real question is why are you so convinced you have MS and why would you want to rush the diagnosis? Perhaps the best solution is to seek a second opinion from an MS specialist. You may have to travel a little but it is probably worth it and you have these concerns. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I have been dealing with MS for the past 20 years. While originally in the relapsing remitting category, I have clearly move into the secondary progressive phase of the disease. From the outset, most troubling, particularly while sleeping, has been what I will call "spasticity" which manifests itself as the constant (up to 3 hrs.), uncontrollable upward movement of my toe toward my calf. I also have foot drop and use a Blue Rocker. However, to control this spasticitiy, my neurologist has only recommended baclofen, which does nothing to help. Can you suggest any alternatives? Thanks. Answer: If the spasm or contraction is as constant and as localized as you mention (just involving the big toe extensor muscle) then the best solution is botox injections. I assume the big toe doesn’t point up like this during the day while you are out of bed? Even if the spasms involves more muscle groups this may be a good solution since you avoid systemic medication that can have other effects on the body. Other solutions include the following: 1. Increase the baclofen dose to as high as 60 mg at bedtime very gradually (10 mg increments once a week) and stop increasing if any side effects occur. Sometimes you need higher doses. In my experience few people benefit from doses above 40 mg at bedtime 2. If baclofen clearly is not effective, give tizanidine a try beginning with 2 mg at bedtime and increasing to a max of 8 mg if tolerated (dry mouth and lightheadedness on standing are side effects) 3. If this doesn’t work, add gabapentin at bedtime beginning at 300 mg and increasing gradually to 1200 mg at bedtime 4. And last but not least, benzodiazepines like clonazepam or diazepam at bedtime usually work well but we prefer to save these medications as the last choice. Make sure you do not continue to take unnecessary or ineffective medications for this problems Talk to your MS specialist about these choices, and see if you can find a solution Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Check out the latest tip of the week READ MORE, and if you have a tip you would like to share please do so below (and please don't forget to hit the 'submit' button so we receive it! Here is My Question:
My neurologist agrees that I have entered into SPMS, and after a major relapse about a year ago, I ceased Rebif, and started Gilenya. Since then symptoms have subsided, but not entirely disappeared. However, I now have symptoms insidiously creeping up on me, and am slowly losing more function. Since Gilenya, my WBC count is lower, but well within the range that my neurologist wants to see. I have had no infections since starting Gilenya. My neurologist now suggests a course of chemotherapy (mitoxantrone - 3 doses each one month apart), and I'd like to know more about the pro's, con's and side effects of this treatment. Answer: Mitoxantrone is used infrequently since the updated report of the therapeutics and technology assessment committee of the AAN in 2010. This report and the various studies that predated this report, heightened our concern for Cardiac dysfunction (12 %), Congestive heart failure (0.4 %) and treatment related leukemia (0.8 %) in patients who have been treated with mitoxantrone. The FDA now recognizes that these concerns may emerge even early in treatment and recommend an echocardiagram after each treatment. If your rate of decline in function is rapid and if there is still evidence of active disease on MRI (esp. if you are under 50) then several other options exist including Tysabri, rituximab and monthly cyclophosphamide. My preferred treatment for patients under 50 with transitional MS (transitioning from relapsing to progressive with continued activity) is rituximab, if your are able to obtain insurance approval. I will sometimes use Rituximab as induction therapy in this circumstance, if the rate of decline is rapid, followed by Tysabri, if the individual is JC virus antibody negative. If not a rapid rate of decline, I will go directly to Tysabri with or without monthly IV steroids for 1 to 3 courses. If an individual is JCV antibody positive (high index) and they have active disease, I will use cyclophosphamide if unable to get rituximab approved. Of course, there is no class I evidence to support these approaches at present. Tysabri is approved for relapsing MS but trials in late relapsing or secondary progressive MS are still underway; rituximab and cyclophosphamide are off label agents in MS but used frequently around the world. The evidence suggests that PML is relatively rare in rituximab treated patients (as compared to Tysabri) and we do not have the high risk of cardiac toxicity or treatment related leukemia with cyclophosphamide treatment. Talk it over with your MS specialist and see what he or she thinks Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
My question is regarding fatigue. Besides good sleep habits, avoiding caffeine, and exercise, how often do you recommend medication such as methylphenidate? I know that these medications can also increase anxiety which is a problem for me. Answer: This is a hard question to answer. Fatigue means so many different things to different individuals and has so many causes. Let’s assume there is no other medical cause for your fatigue (a big assumption since the list of causes is long) and we believe you have primary MS related fatigue. In this case first line treatment is amantadine 100 mg in the am and early afternoon. This rarely causes anxiety or insomnia. If this happens alter the dosing to 100 or 200 mg as a single dose in the morning. Some people require higher doses, but I rarely increase amantadine beyond 400 mg total dose in a day and monitor individuals closely if they are taking doses higher than 200 mg total per day. Common side effects of amantadine are mild nausea, nightmares or sleep disruption, peripheral edema (swelling of the legs) and livedo reticularis (an unusual mottling of the skin). At higher doses visual blurring may occur. People with kidney disease should reduce the daily dose of amantadine to prevent toxicity. People who do not respond to amantadine, particularly if there is a component of excessive daytime sleepiness without a treatable cause or partially treated depression, often respond to the addition of modafinil or amphetamines. Those with anxiety or headache disorders must use amphetamines with caution and begin with low doses to avoid aggravating these conditions. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego |
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