Nitin K Sethi, MD
Assistant Professor of Neurology
NYP-Weill Cornell Medical Center
New York, NY 10065
One of my readers Lisa asked me some very specific MS questions. Since I feel these questions shall be on many MS patients minds I am reproducing them here. Here are the questions followed by my answers. Thank you Lisa!!!
- on September 17, 2008 said:
Hi, I have enjoyed reading the information you posted. I have a few questions of my own:
At this point, I have an MRI with 8 lesions, one possibly of which is tumefactive MS, a postive LP for oligoclonal bands, and my neurologist has diagnosed me with “clinically isolated syndrome”…not full blown MS at this point, but still wants to begin treatment.
1. Is tumefactive MS considered more fatal or harder to treat than “regular” MS?
2. How many oligoclonal bands are needed for a low amount? High amount? My report states greater than 3 bands. Why is there not a specific number given?
3. I have been given the choice between Rebif and Copaxone. Which is the better treatment?
- 7 on September 18, 2008 said:
thank you for writing in. You ask some very specific questions and that is what I shall attempt to answer. I am not sure why your doctor has stil labelled you as a clinically isolated syndrome (likely it is because you have had only one clinical attack suggestive of MS). Your MRI though does show dissemination of the disease in space (you can read more about the clinical diagnosis of MS on my website http://braindiseases.info) and you have more than 3 oligoclonal bands in your CSF. Now to answer your first question. Some patients have large sized demyelinating plaques (lesions) on their MRI. This is commonly referred to as tumefactive MS (because on the MRI, the lesion is large and resembles a tumor more which it has to be differentiated). There is some data to suggest that MS patients with tumefactive disease have a more aggressive disease course. Though I have to add that this data is not robust.
Oligoclonal bands are frequently present in the CSF of MS patients. Here I have to add that oligoclonal bands can be seen in many other conditions other than MS hence one has to make sure that they are present only in the CSF and not in the blood (In MS these bands are produced intrathecally meaning present only in CSF but not in blood). One study suggested that low or absent number of oligoclonal bands in the cerebrospinal fluid at the time of diagnosis predicts a better prognosis. However quantification of oligoclonal bands in the CSF remains an insensitive prognostic indicator and hence should not be used to influence decisions regarding treatment.
Now to your third question. There is some evidence to suggest that higher dose interferon (Betaseron/ Rebif) are more effective as compared to lower dose interferon. The interferons as well as Copaxone are recommened for initial treatment of relapsing remitting MS. Most of the times it is the patient’s lifestyle, easy of administration and side-effect profile which determines the choice between them.
I hope that helps you out and feel free to write again. I wish you the best.
Nitin Sethi, MD
46 thoughts on “Few Multiple Sclerosis questions and their answers”
Thank you for your information! Since I last wrote, I have had extreme numbness in my left hand, chest, wasist, and leg, along with slight numbness in my right fingertips and thigh area of my right leg. The numbness in my left hand has strongly affected my ability to type and carry items with my left hand. I have had two IV steroid tratments (Solu-medrol), with the 3rd and final one scheduled for today. At this time, I can tell no difference in the numbness, especially in my left hand. I have a 12 day Rx for oral prednisone beginning tomorrow in a taper down method (4 pills x 3 days, 3 pills x 3 days, etc.). Should I have been able to tell a difference with th IV steroids at this point? Is non-response to steroids indicitive of “Tumefactive MS”?
I also gave my doctor the go-ahead to order the Rebif treatment for me, which will start very soon I hope.
I read on another website that patients with “Tumefactive MS” have an average duration of the disease from 0.5-20 years. This scares me. Can “Tumefactive MS” ever chane to “regular MS”?
the response to IV steroids at times is not immediate. Steroids act as anti-inflammatory agents and help to either abort an attack of multiple sclerosis or reduce its severity/ duration. Your doctor has done just the right thing for you: treated you with IV steroids (Solumedrol which is methylprednisolone)during your acute attack followed by a taper of PO (oral steroids). So hopefully you shall see a response soon. To the best of my knowledge there is no definitive literature out there to suggest that non-response to steroids is indicative of tumefactive MS.
The interferons have a slightly different mechanism of action and act as immunomodulating agents (meaning they actually modify the disease course and prevent future attacks of MS).
We now like to treat MS patients aggressively right from the start of their disease (and this includes using interferons) with the hope of preventing future attacks and hence hoping for less disability/ neurological deficits.
Your last question “can tumefactive MS ever change to regular MS” is a tricky one to answer. MS is a strange disease, no two patients are alike and the disease course can change in a patient’s lifetime (there may be long periods with no fresh attacks and there may be periods wherein the attacks become frequent).
You are doing just the right thing, stay in regular follow up with your neurologist/ MS specialist. I wish you well and please do not hesitate to get in touch with me again.
Nitin Sethi, MD
ON APRIL FOOLS DAY 2002 MY 32 YEAR OLD WIFE HAD WHAT WE THOUGHT WAS A BRIAN TUMOR. AFTER 3 DAYS AND A WORSENING ON HER CONDITION WE HAD TO OPERATE. WHEN IT THE RESULTS TOOK LONGER THEN USUAL FROM SLOAN KETTERING . WE WERE TOLD GOOD NEWS SHE DID’NT HAVE CANCER BUT SHE HAD TUMERFACTIVE M.S. WHATTTTTTTTTTTTTTTTTTTTTT WELLL AFTER 6 YEARS AND COPAXANE EVERY DAY ,WE ARE BEATING IT .
WE LIVE IN NEW JERSEY
E MAIL ME ANYTIME
Thank you for writing in Joseph. You are right the fight goes on and I am glad you and your wife are beating the odds. I wish her my very best.
Nitin Sethi, MD
I was reading your post and you describe identical symptoms to my own. I have been left with the decision by the doctors whether I want the IV steroids now. I just wanted to ask you how you are feeling now a couple of months later have things improved?
Thank you for writing in David. I shall let Lisa answer your question. I always feel patient’s make the best advocate for the efficacy of a treatment at times. As soon as I hear something from Lisa, I shall post it online for you.
Nitin Sethi, MD
David and Dr. Sethi,
I’m sorry, it has been a while since I checked this website. David, I hope you are doing better. I did notice improvement after the IV steroids and the oral steroids, but it was not immediate (I would guess about 2-3 weeks to get to feeling “normal”.) There is no way that I could have NOT had the IV steroids–as my entire life was being affected and I was miserable. I know that there are harmful side effects to steroids, but given the choice I would do it again in a heartbeat.
I have been taking Rebif for almost 4 months. I need to schedule a follow-up appointment for another MRI, (my neurologist recommended another 3 months after beginning treatment) but I have not done so yet. (Mostly due to I’m scared to find out the results–isn’t that awful?) Up until this weekend, I was feeling ok. I would have small bouts of numbness and tingling, but it didn’t last for long periods of time. However, over the past three days I have felt weak, like what I would describe as “jello legs”, along with just general “achiness”. Also, I have had slight pain in my left eye. Before being diagnosed with MS, I had what my opthamologist called an infection due to contact lense wearing. Maybe, maybe not–my neurologist would not rule out optic neuritis. So, I’m hoping that pain, while it is bearable, goes away quickly!
I’m still getting used to the side effects from the Rebif. Are you on any meds David? If so, what? Although the side effects have lessened from Rebif, they are still very much present. Now instead of feeling like I have been hit by a train it’s just a car! 🙂 The fatigue I experience on a daily basis–whether it is related to the MS or the Rebif, is dificult to deal with. I hope to talk to my neurologist about that when I go back for my follow-up appointment.
Dr. Sethi–Do you know of any doctors that are currently doing the stem cell transplants for the treatment of MS? I would be very interested in considering that as a treatment. There was an article in our local newspaper about a lady with MS who had gone to another country for a stem cell transplant, but to date they have not done a followup article. If you have other suggestions I would love to hear them–I am all for treating this disease!! I went seemingly overnight from being a healthy 30 year old to waking up with a numb tongue and approximately 1 month later being told I had MS–it was a rough few months to say the least!!
David–feel free to write–I’ll try to be more diligent is checking this site! Good luck with your treatment!!
it is indeed good to hear from you again. It had been a while and I was wondering how you were doing. Glad to know that the disease modifying therapy (Rebif) is working. Fatigue is a very common symptom which patients with MS face and suprisingly do not mention it to their doctors if not specifically asked for. There are now good drugs to treat this disabling symptom. I recently did an interview on MS for the health central portal, there is a link to that interview from my blog. You may like to read the same as it does answer many of your questions.
As to stem cell therapy for MS. There are some centers in countries like China offering stem cell therapy for an umbrella of neurological conditions with diverse pathophysiology such as ALS and MS. I am very skeptical about them and I feel it is a way to make money by feeding on patient’s insecurities and want of a better treatment option. None have proven benefits and what worries me are the yet unknown side-effects. Do not get me wrong though. I personally feel that stem cell therapy has lot of potential for many chronic neurological conditions. I would not advise unregulated treatment in other countries.
I hope David gets back to you soon. Again my very best to you Lisa.
Nitin Sethi, MD
Thank you for your kind words. I know that no one has a “crystal ball” or can predict the future, but I just would like to know for certain about what all this means and find a doctor that will “lay it all on the line”. I’m a counselor and I am constantly reminding my kids to deal with their reality–what it really is, not how they would like it to be! As much as I hate this stupid disease and what it has done to my life, I still have to move on with my life and deal with my new reality.
One side effect from the Rebif that I failed to mention was hair loss. I’ve always had very thick hair, which “shed” a lot prior to beginning Rebif, but I can definitely tell a difference over the past few months. Please tell me this will level out also??? I’m certainly no where near losing all my hair, but as I said there is a huge difference!!
Thanks again for your reply, and I will continue to look for David’s message (or anyone else’s). I like being able to communicate with others who are in the same position and appreciate you giving us the opportunity to do so.
hair loss has been reported with Rebif, I feel it should stabilize over time but cannot give you a definitive answer on that.
I commend you for taking MS head-on and still living your life the way you want to live it. As you rightly say this is your “new reality” and you are dealing with it and moving on. That is indeed a valuable life lesson to teach anyone and you are a living example of it.
Again my very best to you. The kids are lucky to have a role model in you.
Nitin Sethi, MD
I’m a retired physician with MS of very long duration (several decades). I’ve been taking Rebif for about 5 years, and the slu-like side effects have been almost completely gone for at least 3 years. The fatigue appears to be solidly MS rather than Rebif; it’s part of what we have to deal with. Good luck and keep on keeping on.
Dear Dr. Michael,
thank you for writing in and telling me about your personal experience with using Rebif. I agree that fatigue is a part and parcel of MS disease itself and can be quite disabling. Thankfully now we have some medications to treat MS fatigue. As regarding flu like symptoms, they have been reported with use of interferons and can usually be managed by administering an antipyretic/ analgesic prior to injecting the interferon (Rebif).
I wish you my very best.
Nitin Sethi, MD
In April of last year I had a sudden change in the vision in my right eye. It coincidentally happened after i got some insulation in my eye, and i experienced subsequent blurring problems. The eye doctor i was sent to told me I had an inactive infection and it would heal up on it’s own over a four month period. For the most part it did improve, but follow-up phone calls to this same doctor got me no new information. In April of this year my right eye developed a white haze and noticed holes in my vision. The emergency room told me I had ocular migranes and sent me on my way. I followed up with another eye doctor who performed a visual field test showing I had a left homonymous hemianapsia (left visual field cut), and needed an MRI.
The MRI showed a lesion over 5cm in size in my right temporal lobe which was mistaken for a brain tumor. Before the month was over I had undergone a stereotastic crainiotomy and had the mass recected. The pathology report showed no signs of neoplasm or malignancy, but instead a demyelinating process.
Just last week I was diagnosed with Tumefactive Multiple Sclerosis. The information I have found on this is very conflictive. One source (including my MS doctor) shows a very benign course, while other sources show a very agressive course.
At this point I do not know what to beleive and would like to know what I can expect. At this point the white haze has resolved, but my right eye is very blurry and I still have the left visual field cut. I cannot work at this point and cannot drive. I also have developed a left side weakness causing me to walk with a cane. My MS doctor has all but encouraged me to apply for a permanent disability upon my last visit. This is very discouraging to me as he feels the course is benign in Tumefactive MS.
I have always believed knowledge is the most powerful tool a person can have, as you cannot face or fight anything you know nothing about. My two main questions are whether anyone else has had a similar experience and where I can find accuate information. Now I am still recovering from the surgery and have been started on a heavy dose prednisone. I am very interested in what opinions anyone may have based on the information I have provided.
thank you for writing in. You have been through a lot. Tumefactive MS as the name suggests can resemble a brain tumor on neuroimaging (usually on account of the large size of the lesion, MS plaques usually are smaller in size, multiple and scattered throughout the brain and the spinal cord). Due to this the diagnosis is frequently delayed. It is initially felt that the patient has a brain tumor only to stand corrected when the histopathology report comes back as negative for cancer cells and instead showing demyelination. The course of tumefactive MS varies from patient to patient (every patient’s disease behaves slightly differently).
The results of your other tests-visual evoked potentials, somatosensory evoked potentials, spinal fluid results and MRI scans of the brain and spinal cord shall aid your doctor in prognosticating you about what the future may hold.
Again I wish you my best. Feel free to write in again.
Nitin Sethi, MD
thank you for writing in. I am sorry to hear about your sister. Please feel free to write in again, if you have any question regarding her recently diagnosed condition. I wish her my very best.
Nitin Sethi, MD
thank you for writing in to me. I hope Julie reads your message and gets back to you.
Nitin Sethi, MD
My husband had similar things..he was healthy..didnt show any signs
the first week of August 2010..he just woke up with a droopy face and weakness on his left side
went to the ER..they thought he was having a stroke..altho he is only 37 with no highblood pressure..
the CT scan was clear..and he was scedualed to have am MRI a week later..
during the next few days he couldnt move his left arm..then it went all the way down to his left leg..now all his left side he cant move..and very numb..
we did the MRI..he was diagnosed with Tumefactive MS>
in the next month he did 5 sessions of plasma exchange..that didnt help
now he is doing Mitoxantrone once a month for three months..
last week he did his third one..
now after almost 4 months..he can sit and stand with aid..take a few steps..his arm is not recovering as we would like..the doctors are telling us to keep hope..he is doing his physical therapy daily..he is still in the hospital..but visits home from time to time
how is your sister??
my heart and prayer goes to all of you
thank you for writing in. I wish your husband a speedy recovery.
Nitin Sethi, MD
Hello Dr. Sethi and everyone else;
I have been reading the information contained in this discussion with great interest. Up until last October (2008) I was a healthy, active 46-year old lawyer with a busy life (fill time practice and 4 kids). We had a family trip to Europe last summer and other than some facial numbness (which I attributed to a dental procedure) I had no other discernible symptoms. But in October, I began bumping into door frames, stumbling, was unable to type or write efficiently and the right side of my face was completely numb. My first MRI indicated a large lesion on the right side of my cerebellum. My condition continued to deteriorate, to the point that I could not walk without assistance and was experiencing vision problems too (dimness, intermittent doubling). I had one course of IV prednisolone (1000 mg every other day, for 10 days), which seemed to have a modest beneficial effect (the double vision resolved) but I was still unable to walk unaided. A second MRI 6 weeks after the first showed that while the original lesion had somewhat reduced in size, I now had a second large lesion on the left side of the cerebellum, and a new, large lesion in the occipital region. I experienced periodic headaches and vomiting, which was horrendous. I had a second course of IV prednisolone, which had little/no apparent beneficial effect. A third MRI indicated that all of the lesions had actually grown in size. My neurologist was baffled and referred me to the regional MS clinic at the University of British Columbia, where I’ve been seeing Dr. Virginia Devonshire. I was diagnosed with tumefactive MS early in 2009 and started on mitoxantrone therapy (once a month for 3 months, then to be re-assessed). Currently, I feel that my condition has improved significantly. I can walk independently again, my vision has improved markedly and my energy level, while still far from where it was, has really improved. I have been especially encourage by the fact that my doctor feels that it is premature to consider applying for disability status. Although I am not yet back to work, I am considering trying a part-time schedule in the fall. For the first time since this all started, I am beginning to consider my life, post-diagnosis. While life has changed, it’s not over!
The one thing that I have observed, that may help others in my situation, is how important physical fitness and exercise is to both your psychological well being and your ability to heal. I love walking my dogs (2 big lab X’s),hiking and cycling with my kids – activities that I could not do at all when my balance and vision were so bad. Spending 6 months laying on your back completely destroys muscle tone too! However, I found that I could safely work on the floor with light weights (1-3 pounds) and use a stationary recumbent bike to help with cardio. I started with easily achievable targets (i.e. 5 minutes of cycling) and worked my way up to more challenging accomplishments. The thing is, you can’t hurt your brain (as long as you don’t fall) by exercising and it really helped me feel “better”! I still can’t walk my dogs by myself (I’m too afraid of getting pulled over if they see a squirrel) but that’s a goal that I’m working toward. When you’ve been levelled by a disease like MS, I think the tendency is to treat yourself as being exceptionally fragile – I certainly did. What I learned is that even if I over do an activity (like walking several kilometers on a hot afternoon, with my boys) that I may suffer a bit the next day or two; I just need to rest and I will get over it – it won’t make my disease worse. My husband and I are planning our next family trip – cycling through Brittany and Normandy in France, probably next year (2010). We’ll have a good Plan B in place in case I have a relapse, but I’m not going to stop living because of this crappy disease.
My best wishes and encouragement to you all!
thank you for writing in and sharing your medical history with me. I salute your courage in the face of adversity. My patients never cease to amaze me, their grit and determination to still remain in control of their bodies and their minds even as they battle chronic and disabling neurological conditions like multiple sclerosis. The human spirit is alive and well, I feel.
You raise some very good points. Patients with MS tend to accumulate neurological deficits as time goes by. They may not recover completely from an attack of MS. So from relapsing remitting disease (RRMS) they progress to secondary progressive disease (SPMS). Their disability increases and we grade this with the help of a scale called Expanded Disability Status Scale (EDSS).
I encourage regular physical exercise exactly for the reasons you so eloquently put forward in your post here. It keeps the muscle tone and bulk intact and prevents deconditioning. The longer patients are on their feet, the better is the outcome in the long run. Physical therapy plays a big part in this equation. Some patients like you have a predominance of cerebellar symptoms-their muscle strength may be relatively intact, but their coordination and balance is off. At other times they have a disabling tremor. This requires special type of targeted rehab (rehab geared to their disability). I also encourage cognitive rehab. We now know that MS does not just involve the white matter tracts of the brain and spinal cord, it also involves the grey matter and causes cognitive problems early on in the disease course. I encourage patients to keep their minds engaged, read, interact, do cross-word puzzles–anything which shall help the cognitive reserve.
So Kim, hang in there. My best wishes are with you. Hopefully soon you shall run with your dogs and chase those squirrels down!!! My dog Bruno is not much of a squirrel chaser, I have always wondered why. Maybe he just does not find that interesting. On the other hand, he has a fascination with ants and all things which creep and crawl. To each his own I say, dogs are so much like humans.
Nitin Sethi, MD
Thank you kim for sharing all this!!
when my husband got his attack and was diagnosed with Tumefactive MS..your words were very helpful for us..because he had similar things..his left side was paralised..went from 3/5 to 0/5..then they gave him steriods ..that didnt help..then plasma exchange..didnt help much..then they started him on mitoxantrone..
its been 4 months now since the attack..he can now sit and stand ..take a few steps..cant bend his left knee yet..but we are getting there..he can open his fingers and raise his arm to his chest..
i know that every person is different..
we are very hopeful..
how are you now?? and did you take the other 3 doses of mitox?
wishing you and your family all the best
thank you for writing in. I hope you heard from Kim soon.
Nitin Sethi, MD
Thank you Dr Sethi for your response and the forum your blog provides for people like all of us to discuss personal experiences which may be helpfull to others. Thank you everyone for your sharing your experiences as it helped me feel I was not alone.
Earlier this month I reported to my doctors that my location of pain had moved from the surgury location to my right temple area and to the top right rear of my head. A second MRI was ordered and it showed a “surpigonous cortical enhancement” behind the resection cavity and snaking it’s way into my right occipital lobe. My MS doctor has told me this was inflamation. This was why I was put on the prednisone. As it stands now, I will have a follow-up clinical appointment in early July with the MS doctor, and a third MRI in early August.
To this point, the painful photophobia I had is the only thing that has resolved. It was so bad I could not watch television or turn on a light without wearing sunglasses. With my right eye at 20/200 and my left eye at 20/55, I find I have no depth perception. I also find I am having trouble with short term memory. As one person stated on this site (I appologize I do not remember your name) this is my new reality. I just need to resolve the pain from the surgury so I can begin to work toward getting back in control of my life.
Once again, thank you everyone for your input and for sharing your experiences. I wish everyone the best.
You are most welcome Kehurst. I wish you my very best.
Nitin Sethi, MD
It has been a while since I have checked this website. I hope you are doing well!
I haven’t done the best with keeping up with my 3 day a week routine on the Rebif, mainly because of the side effects. I find it’s better if I take it earlier in the evening so I can take more Tylenol before I go to bed (the best time for me to do the shot is like between 5-7 pm), but sometimes that’s not always convenient. I had my last MRI in March and the tumefactive lesion was much smaller on the MRI, but there was evidence of one spinal cord lesion, where I previously had none. So, the good thing is that I know the Rebif is helping some. I hope I can do better by sticking to a schedule and just wondered if anyone had anything that really “worked” for motivation (other than a positive MRI)! 🙂
I have had issues with my insurance company lately. My Rebif copayment has doubled, my copayment for my neuro visits have increased, and the insurance will no longer approve my prescription for Provigil (I was able to get two prescriptions filled). I have written two appeal letters so hopefully the second one will help. My neurologist currently wants me to have an MRI every 6 months, but of course they too are expensive. I’m glad to have insurance, but sometimes I think it would be easier if I didn’t!
Anyway, to the point of my post: My question is concerning the Provigil. In my appeal, I have included letters from my doctor on why I should be taking this medication, but my insurance company believes I should also be on an anti-depressant for this medicine to be approved. If I felt they would approve it on that basis, I would take the anti-depressant, however I don’t know if they would approve it and furthermore, I don’t believe I am depressed. Do you have any suggestions on getting Provigil approved for insurance coverage?
My second question is regarding alternatives to Provigil–I have heard of Strattera being used. Are there others? I was also given a prescription for Nuvigil, but that got me one prescription filled before it was also denied. How well does the Strattera work in comparison to Provigil, and what kind of dosing can I expect if I am given a prescription for that drug?
I find it ironic that many of my students take Strattera for AD/HD…I’m very curious on how it will work to alleviate my fatigue when it works to keep them calm!!!????
Again, I really appreciate the opportunity to ask questions and interact with others! Thanks for the great resource you are providing!
it is indeed a pleasure to hear from you again. I was wondering how you were doing so thank you for filling me in. Happy to hear that Rebif is working. The three times weekly subcutaneous dosing of Rebif can be problematic for some patients. The side-effects can be quite troublesome. What I have found helpful is if the patients rotate their injection sites, inject the drug before their bedtime and take an analgesic/ anti-pyretic prior to injecting Rebif.
Now to the question of fatigue in MS. It is indeed a difficult to treat symptom. Conventional wisdom is to use a CNS stimulant for its treatment and hence drugs like Provigil (modafinil), Symmetrel (amantidine), Ritalin (methylphenidate) and Cylert (pemoline) have been used. They all work, some better than others. Some like Provigil are used more often because of their safety and favorable side-effect profile.
Sadly in today’s managaed care systems, insurance companies call the shots. We as physicians too have our hands tied. One way to go about would be to request your neurologist to screen you for depression. There are many validated scales to screen for depression in patients with MS. If the scale indicates, that you do not have depression (depression is not the cause of your fatigue), then your doctor can write to the insurance company requesting approval for Provigil.
So talk to you neurologist Lisa. I wish you well as always.
Nitin Sethi, MD
The pharm company that manufactures Rebif will assist you with payment. I used Rebif, and have done very well on it.
I was diagnosed November, 2011. I am doing well. I go to bootcamp daily (5am) and that helps with fatigue. I also struggle with the side effects of the meds, and take mine RIGHT before bed. If I wake in the night, I have aches and fever…sometimes a feeling of insomnia as well. That isn’t constant.
I deal with it, ANYTHING is better than the relapse I had. Hospitalization and the inability to feel the entire lower portion of my body.
Some suggestions, eliminate sugar from your diet and research some supplements for MS. Low levels of Iodine,vitamin D and b12 are cuplrits and cause our neurological state to suffer.
Good luck, and remember….to think positively. I am 39, a teacher, mother of two young children and I just live day to day!
thank you for writing in. I hope Lisa replies back to you.
Nitin K Sethi, MD
My husband was just diagnosed with tumefactive MS at the age of 56. His MRI showed older more typical MS lesions but this was his first clinical episode (left-sided facial sagging, slurring, mild left-sided weakness and reduced coordination in his left hand). He is starting Rebif next week. We are trying to decide whether to go to a more specialized clinic for a consult, although our local neurologist was very good at making the diagnosis based on MRI and CSF (didn’t need a biopsy) and getting us started on therapy right away. Is there value in going to a clinic that has maybe seen more of this type of MS? Or would they just do the same thing (put us on one of the four first-response modulating meds)? How common is tumefactive MS? We are looking for any answers to what to expect from this variant (his dad had a more typical clinical course of MS).
Thanks for any help.
thank you for writing in and sharing your husband’s medical history with me. Going to a comprehensive multiple sclerosis center has some advantages. These centers are geared to treat all aspects of the disease–the medical, physical, psychological and social. Apart from doctors, these centers have trained MS nurses, physical therapists and social workers.
Tumefactive MS is not so common. The disease course though varies from patient to patient.
Nitin Sethi, MD
I am writing you to ask if trouble initiating a swallow can be a symptom of MS or not. I have had some swallowing trouble over the past few years, but it would come and go within a few days or so, and then not happen for a while. This past summer I had an episode that still has not resolved. It started in mid June and it progressed from trouble swallowing food with water to force it down, to the point where I couldn’t swallow my spit without great difficulty. (this progression took about 7 days or so to go from totally normal to really bad) The Dr’s gave me steroid IV and did a bunch of test. I thought that the Chiropractor I had been seeing caused it as my right neck, shoulder and arm were hurting a lot and I was having trouble using my right arm due to the pain, tingling, tightness. It also hurt and tingled up the back of my head, and around and under my ear. I was having trouble with my tongue but could still talk well, but had movement and control trouble with liquids and soft stuff on the modified barium swallow that they did. The steroids seemed to get me to the point where I could start getting liquids down in small pieces, and I have now progressed to doing puree ok and some very soft solids, but I still need water to wash it down in pieces. I can’t swallow normal amounts, or eat normal food, but so long as I use water I can at least get small amounts down. Eating takes a long time. I have to use a straw as I still can’t drink normal out of a cup. I is hard to pull up thicker liquids through a straw, and I can’t swallow pills at all. I have a peg tube from all of this so I can get adequate nutrition.
I also have had some breathing issues over the past few years. I feel like I can’t get a breath and that when I try to pull in air, I am weak. Pool therapy makes the breathing problem worse and I yawn a lot when I am in the pool. The pressure from the water seems to make it hard to expand.
I have been diagnosed with Seronegative Spondyloarthritis, but my Rheumatologist said that these problems were not from that. I have had breast cancer, but my Oncologist said that this is not from cancer.
I am very fatigued all the time. The above problems seem to be getting worse over time. I also have bladder problems, headaches, dizziness and feeling motion sick nauseated, muscle stiffness and pain, itching when I sweat, itching around my chin and face, PLMD, legs buzzing,tingling, weakness, sleep trouble, trouble with recall and concentration, balance issues, and general lack of being able to gain much strength no matter how much rehab I do.
I have a number of health issues and am trying to find a Dr that likes puzzles, as it seems I am one. Before I see any other Dr’s I would like to know what direction to pursue as I don’t want to waste their time or mine. The Neurologist I saw in the hospital wants to wait to see what else happens. I am not comfortable with that unless that is the only course of action available. I know something is wrong, but don’t know what it is at this point, as I have a complicated history. I don’t know which way to go first. I would like to know if I can get more of my swallowing back.
Any insight you would have would be much appreciated. Thank you for your time as I know time is valuable.
your medical history is quite complicated and hence I shall not attempt to diagnose it here with limited history and without having examined you. My advise to you would be to see a doctor, initially a good PCP who can work out some of these issues that plague you. Is this some sort of connective tissue disorder?
Nitin Sethi, MD
Dear Dr. Sethi,
Thank you for your reply.
The only thing I know for sure is that I have Seronegative Spondyloarthritis and Enbrel has helped this quite a bit. I don’t have any positive blood work for Lupus, MG, or Sjorgren’s. When collecting my test reports for a consult, I read that the CT of my brain showed a 4mm white matter lesion in my right frontal lobe. This was not present on a MRI or CT that I had 2 years ago when they were working up for the Spondyloarthritis. Most of the symptoms I have seem to wax and wane. As an example, when I had bladder problems this past January, it lasted about 2-3 months then got better, though not completely.
My PCP is not sure what to do next, though he thinks it is important to try to figure out this swallowing issue. The Neurologist at the hospital thought it might be paraneoplastic syndrome, but my Oncologist and PCP don’t agree. I am wondering if it might be MS as I am not fitting the profile for ALS which they thought at first.
Do you have any ideas on how to find a diagnostician? I don’t really care if I have to travel or not, I just would like to try to get an answer, or at least rule things out.
Again, thank you so much for your time and consideration.
Julie, difficulty swallowing can be caused by lots of things, but MS is one of them. My husband (who has tumefactive MS) and his father (who had MS) both had problems swallowing.
Have you had an MRI? It is much more definitive for MS than a CT scan. How about a lumbar puncture (spinal tap)? That was really important in my husband’s diagnostic workup, because it showed elevated o-bands, IgG and myelin basic protein which, with the older lesions on his MRI (he never had symptoms from them), diagnosed MS instead of a tumor (which tumefactive MS mimics). He also ran a LOT of other tests on the spinal fluid to rule out anything else that could cause his symptoms. Did your neurologist do a complete neuro exam, including testing all of your reflexes, strength, balance, your eyes, sensation in your arms & legs, facial muscle & tongue movement, etc? I don’t know how you can diagnose (or rule out) MS without the MRI and spinal tap, but if you have MS, you want to know so you can get started on treatment. Ask your doctor if it would be appropriate for you to have those tests done.
Thank you Beth. I hope Julie gets to read this.
Nitin Sethi, MD
Thanks so much for the information. i have not had a complete work up like this due to the fact that my Neurologist is locked in on Paraneoplastic Syndrome. I am currently going to go to Mayo Clinic in Minnesota at the urging of my Oncologist and Rheumatologist. Since I have other health issues that may or may not be related to each other, they thought this was the best way to get a group of Doctor’s to talk figure out what relates to what. They agreed with what you said about the need for more tests as my work up was lacking. I did look at my tests again, and it was an MRI that picked up the white matter lesion. I had both a CT and MRI, and had gotten the reports confused. The CT didn’t pick it up.
I am thankful that I know what direction to go now. I don’t want to have a peg tube for the rest of my life if I don’t have to.
Again, thanks for your suggestions. Thank you Dr Sethi for providing this space to learn from others experiences, and your own expertise.
Merry Christmas and God Bless,
Thank you Julie. Merry Christmas to you too. As always I wish you my very best.
Nitin Sethi, MD
My son suffers from R-R tumefactive MS. He has had 4 episodes.
I am at present involved in trying to understand what people who get tumefactive MS have in common.
Would you consider providing (anonymously of course) the way you were born? Was your mother drugged during the process? Were you delivered by forceps? Were you jaundiced?
I will check this site for your input. Thanks!
thank you for writing in. I have posted your request online. Hope you hear back soon.
Nitin Sethi, MD
Glad to have found this site (there is so little information about tumefactive MS).
My wife has tentatively been diagnosed with tumefactive MS (still in the “wait and see”) part of this… and I was wondering if you could take a look at some of her brain MRIs I have put up on her website. – Her lesion is just over 1 cm and I read that a diagnosis for tumefactive indicates lesions of 3 cm or greater? – Could it still be TMS?
Here is her website:
Her complete MRI scans are available for download as well. They are over 200 megs, though, so it will take a while to download.
thank you for writing in. I am glad you and your wife found the blog and my website (http://braindiseases.info) useful. I did look at her MRI scans. The limited sequences which were on the blog show a large right periventricular lesion. You ask me a simple question. Could this still be something else-something other than tumefactive MS. Well the differential of any single lesion in the brain (and especially one that is periventricular) includes tumors and other infectious/ inflammatory lesions. I assume she has had a full work-up for the same. The diagnosis of MS is at times not apparent clinically (on account of a single lesion/ plaque or because there is no evidence of dissemination of disease in time). Then we usually have to resort to additional testing: did she have visual evoked potentials, brainstrem auditory evoked potentials, somatosensory evoked potentials? Was a MRI of the cervical spine done: was it clean? Were tests (mostly blood tests) carried out to rule out/ rule in other connective tissue diseases like sarcoidosis and so forth. I assume she had a lumbar puncture. What did the spinal fluid yield?
At times inspite of the above battery of tests the diagnosis remains elusive and doctors may then resort to getting a biopsy of the brain lesion. As you can imagine this is an invasive test (and carries its own risks) but when done correctly can yield the final histopathological diagnosis (histopathology never lies and hence finally one can be certain that this is indeed a demyelinating lesion and not some malignancy such as a lymphoma).
I hope I have been able to answer your question. Please feel free to write in again Chris. I wish both of you my very best.
Nitin Sethi, MD
Hello Dr. Sethi,
Quick update on my wife Jennifer:
Her MRI on December 6th showed slight enlargement of her lesion, but not much change otherwise. The diagnosis is still tumefactive MS.
We have been referred to Dr. Brian Weinshenker at Mayo in MN, who we hear is quite the expert in this field.
We are scheduled to see him the 20th through the 30th of this month.
Hoping we hear some good news about how to manage this thing and get her back to some semblance of “normal”.
thank you for writing in and updating me about Jennifer. I hope you shall have some answers soon. Give my best to Jennifer.
Nitin Sethi, MD
I notice that several people here have written in to ask questions about Tumefactive MS. I myself have a working diagnosis of Tumefactive MS. I wanted to let you and those who have posted on this thread know that a few of us with Tumefactive MS have started a facebook page. If you go to facebook and search for Tumefactive MS, it is really easy to find our page. There is so little information published about Tumefactive MS, that we wanted to gather a group of us who can compare experiences and things we have learned. We would love to have you and anyone else join us, share, and ask questions about Tumefactive MS. Thanks so much for the information here, and for doing so much to help those of us with complicated diagnoses.
All my best,
thank you for writing in to me and informing me about your Facebook page. Hopefully it shall help others with this condition.
Nitin K Sethi, MD
Thanks Mandy for starting the fb page. My husband was diagnosed 3 years ago, and it was almost impossible to find anything on Tumefactive MS other than radiological findings. Now his doctor is saying it is possible he had CIS (clinically isolated syndrome) because his tumefactive lesion is the only time he had any clinical symptoms, though he had some older “silent” lesions consistent with MS. He’s been on Rebif for about 3 years, and at 2.5 years, still did not have ANY CHANGE in his MRIs (no new lesions, no increase in lesion volume) and no new symptoms. The only way to know (for now) if he would progress to Clinically Definite MS would be to go off the Rebif and see if he has another episode – not a risk we’re willing to take. There have also been studies that show that early treatment with immune-modulating drugs after CIS can delay progression to definite MS.
Anyway, thanks for providing a way for more people to be involved in the discussion.