Ask the Experts: Symptoms
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Q: How is it one can die of complications from MS? What goes wrong with MS that can lead to death?
Q: I am 60 yrs old. I was diagnosed with MS 25 years ago. I use a scooter/wheelchair most of the time. Anytime, regardless of the weather or my position, my legs from the knee down including my feet are extremely cold. I asked my doctor, and he says it's due to my internal thermometer which has been compromised. Is this true and what can I do?
A: I’m not clear about whether you have a coldness sensation in your legs or whether they actually feel cold if felt by another person. The usual cause is a spinal cord effect of MS which affects temperature and circulation, but it is also possible that you have a blood vessel condition, or that the inactivity of your legs causes venous blood to be stagnant and cool. It is not likely to be an effect of temperature regulation alone. It might be wise to ask your primary physician if you should have a vascular analysis done.
The result might lead to treatment. I hope this is helpful.
Q: I was diagnosed with MS three years ago. I have been having increased problems with the 'tingles' when I bend my neck. The tingles are on both sides. Last night I noticed something didn't feel right...I couldn't feel the position of my left leg on a stair. Is it possible my MS is moving down my spine?
A: The tingles you describe are a part of MS localized to the cervical spinal cord (neck) called L'Hermittes sign. This part of the spinal cord also controls the legs and your recent symptom does not imply that MS is "moving down your spine". There are medicines which can help reduce the tingles quite a bit. I would suggest you talk to your neurologist about medications including Carbenzepine, and also ask for an assessment to help determine whether there are any physical or anatomic changes related to the MS. Hope this is helpful.
Q: I have a distinctive "burning" pain in my low back (near disk L4) and want to know whether this symptom might be caused by MS. Or is it more likely to be a physical back problem? Are there treatments that I should seek out or treatments that I should avoid?
A: MS can cause back pain, usually the result of an altered gait which causes back strain. It is important to remember that even if you have MS, you are not protected from other conditions, so a visit with your neurologist might be useful to be certain there is nothing else amiss.
Q: I have had Relapsing Remitting Ms for 15 years. I am on Rebif and exercise regularly. Recently, I have had a lot of problems with my feet. I know about numbness and tingling, and have had that off and on for years. During the last few weeks, when I go to bed, my feet get so hot, I wake up and they are burning. Often during the day they are so hot I have to run them under cold water. Help me understand what my nerves are doing, how I can help/treat this problem and what happened to have this symptom all of a sudden appear?
A: There are several possible causes for warm feet including the possibility of a new MS lesion in the spinal cord. Treatment is possible depending on the cause of the problem. A visit to your neurologist is in order to help resolve the issue and might include an MRI examination of the spinal cord.
Q: I believe I have signs of L’hermitte. The MRIs have come back showing no new lesions, but I often feel like a lightening storm is going through my neck and head, and across my shoulder blades. Is there something that can help me, and is this permanent?
A: There are several medications which often reduce or eliminate that kind of sensation, most commonly carbamzepine. It is not uncommon to have a cervical spinal cord lesion producing this problem and not be able to see it in an MRI since the lesion may be quite small. The symptom itself is not dangerous but can be quite annoying. The decision about whether to treat it depends on a discussion between you and your neurologist about the trade off between side effects and benefits of the particular medication to be considered. In most instances the feeling resolves without treatment over a number of months.
Q: I am recently diagnosed with MS. I have hot/burning hands. Is this normal? Is there anything that I can do for relief? Also, I have low pelvic pain. Intensity varies however, is it at a 7 out of 10 today. Thoughts?
A: The hot burning hand may be caused by an MS plaque in the back part of the spinal cord. This kind of feeling often responds well to medication, an example would be carbamazepine. It would be useful to ask your neurologist about whether that treatment is reasonable for you. Pelvic pain i s an uncommon feature of MS, and should be evaluated by your gynecologist before using some treatment which might mask the discomfort , but allow another process to get worse. Various infections, cysts etc. are common causes.
Hope this is helpful.
Q: I have several strange symptoms, and have seen a nuerologist, but she has not done any scans/testing. My symptoms come & go..I had really bad tingling in my legs/feet when I went to see her this summer. It went away about a month ago...now I have this burning sensation in my right hand, literally like my hand is ON FIRE! When I asked why she was not ordering a brain scan...she said "the brain does not work symmetrically, that I would not have symptoms on both sides of the body. Is this true?
A: Hard to tell at a distance what is going on. However, there is no particular reason to think that a scan will settle the matter. Chances are your neurologist did an examination and found nothing wrong, hence concluded that a scan wouldn't help. Your symptoms sound more like a peripheral nerve problem than MS. A nerve conduction study might help.
Q: I am 24 yrs old and have had Trigeminal Neuralgia (TN) for 2 years now. I have seen an MS doctor at University of Kansas and I currently see a VA neurologist. I have had alot of testing for MS done including MRI's, EEG, and audio tests. The MRI's showed no lesions at the time but the EEG showed a definite seizure disorder. Both neurologists think that I will have MS in the future. Recently I saw the neurologist and I am slowly losing feeling in the right side of my body, which is the side my TN affects. Should I be worried or asking for another opinion? How does the progression to MS work with TN?
A: While it is true that the incidence of MS among young people like you is higher in MS than the general population, Trigeminal Neuralgia does not define MS, and there may be another cause. In any event, if you have now moved to Massachusetts, there are several MS centers where you could ask for another opinion, and a review of an imaging or other studies done to date. There is not enough information in your question to formulate a more complete answer, and if you are experiencing progressive sensory change on one side of your body, another evaluation would be in order.
Q: What do I do about the shaking and twitching of my hands. It is really affecting my writing and even the typing I am doing now. Please anything but steroids!
A: The kind of treatment varies with the nature of the shaking. There are various medications which may help and in some cases local injections or even operative procedures are advised.
I would suggest you ask your neurologist to help you determine the kind of shaking which affects you and then it will be easier to help formulate a list of options. Your neurologist might even suggest a visit with a movement disorders specialist.
Q: I have been diagnosed with MS for about 10 years. My MRIs have shown both brain and spinal cord lesions in the past. Recently, I have experienced a really bad episode where I have had lots of problems walking. I have lots of sensation loss from my shoulders down (not total everywhere, some patchy loss of sensation). The episode started in March and has not let up. I have had some days where things seemed to be improving but then got worse again. Solumedrol helped some temporarily but symptoms got worse about a week after stopping. My spinal MRI though does not show any definite new lesions. Could these symptoms still be due to MS or should I look for other causes?
A: These questions are tough. I'd start by saying that your own neurologist can assess whether the symptoms fit into an MS pattern or not. That said, the detection of new lesions on spinal scans is not very complete. They can be small, or even in some cases totally invisible even though it is obvious that a lesion must be there. And some spinal cord lesions can cause symptoms that last for a number of months, and then improvement can occur.
Then a second question: is the treatment you are taking working or not. Most MS experts would think that a treatment—such an interferon—would need to be changed, or something added to it, if there is clear evidence of disease activity. Adding an oral drug, such as mycophenolate, or going to Tysabri, are possibilities. There are risks there that you would have to think about.
Q: I was diagnosed with optic neuritis in 1999. It was a one time occurrence and resolved itself pretty quickly. I have been going for yearly MRIs ever since, but luckily have never been diagnosed with MS. However, when I do high-impact aerobic activity or take a hot shower I do experience Uthoff's phenomenon. It seems to come and go, but lately I experience it often. When doing research, all I can find is information on Uthoff's as it relates to MS. Is it possible to have this symptom and not have MS? My doctors say it is, but as you can imagine it's a constant worry that I will develop the disorder at some point in my life.
A: This is a very good question and pertains to the basic nature of MS. You can certainly have Uthoff's phenomenon after damage to the optic nerve—whenever the conditions are the correct ones. Probably there is some cross talk or inter-fiber communication going on. Likewise you can have a Lhermitte phenomenon for many years, maybe forever. These two symptoms mean that there has been prior demyelination. They tell you nothing about new lesions. New lesions mean MS of course. And it would be required that there be a new symptom, or in this age of MRI, a new lesion by MRI, to get a diagnosis of MS.
Q: I was diagnosed in Nov. 2007, but suspect I've had it since 2002 due to several other miss-diagnoses. For the last two months I've experienced swollen feet and legs at first, and this has now become body fluid. Could this be from MS?
A: Swelling of the lower extremities can occur in MS but is rarely seen unless there is severe weakness and stiffness of the legs and usually the person so affected has enough difficulty walking so that they require a wheel chair at least part of the time. If that is not the case with you, then an evaluation with your primary physician or neurologist may be wise. There are many causes for fluid retention in the legs (edema) including varicose veins, liver disorders, kidney diseases, heart failure, and sometimes it can be related to diet and medication.
I hope this helps answer you question. It should be looked into further.
Q: My Wife has had MS since 2001. We have been treating it with Avonex weekly shots and it has worked wonderfully. This past year though, my wife has been experiencing deja vu (loss of breath, feeling like she has been there before) and this is happening 4 to 5 times a day and a few times a week. I was wondering if this has anything to do with her MS?
A: It could be related to MS, but it has the quality of a possible seizure disorder (epileptic) as you describe it. Without further information it is hard to be certain about the cause, and even a recurrent cardiac arrhythmia (irregularity of the heart beat) can mimic this set of symptoms.
It seems to me that further investigation is appropriate which might include an electroencephalogram, a heart monitor, and/or an imaging study might be appropriate. I would urge you to bring this development to your neurologist's attention at an early time.
Q: I have MS with cord lesions but without brain lesions. I experience both physical and cognitive symptoms. How common is it to have MS without brain lesions; and are any statistics or data available in cases like mine particularly in view of the cognitive symptoms I experience?
A: There are certainly cases of MS without brain lesions, but they account for less than 10% of cases. If you think there are cognitive issues, then formal neuropsychologic testing should be considered to be more certain. Very small lesions may not be seen without special techniques. I would suggest you discuss this with your neurologist, and if still concerned, a second opinion at an MS center might be helpful. In the absence of brain lesions, assuming the MRI was done correctly, other causes should be considered.
Q: I recently lost about 60% of my hearing due to MS. What are the statistical odds, if any, of losing my eye sight due to MS.
A: There is no correlation between your hearing loss and the likelihood of a visual event. Very few people with MS ever develop bilateral blindness. MS can cause visual impairment of course, but in most instances one eye is affected and the loss is usually not total.
A review of your tests may indicate whether there has been any injury to your visual system, and you should discuss that with your neurologist. If you are not comfortable with that discussion, then a visit to an MS Center may be helpful.
Q: I am started to notice a possible "new" symptom and am wondering if it is the warning sign of a new episode. I woke up this morning with a gripping around the back half of my torso - around the back, rib to rib, about 5 inches wide. Is this possibly the "MS hug" and should I be worried? Thank you.
A: The symptom you are describing is typical of MS. Some call these feelings "bands". They are due to a small lesion in the sensory pathways of the spinal cord right at the level where you feel it. By itself the symptom isn't that important, and will no doubt fade away in a few weeks. But it does indicate that your MS is active. If you are on disease-modifying treatment (for example interferon), you'll have to review with your neurologist whether the treatment is adequate or not. What you are looking for, is no new symptoms of any kind.
Q: Can you have relapses, or attacks (on existing sympstoms) without having new lesions show up or existing ones look worse on an MRI.
A: In short yes. It's very common to develop symptoms which may be quite prominent without seeing change particularly if the new lesion is in a critical place and is small.
Q: On January 3rd, I woke up having two numb feet…they tingle. I saw a neurologist at UMass. I was sent for upper spine and brain MRIs. They found multiple lesions on both my brain and spinal cord. We followed up immediately with contrast MRI’s which showed ‘active lesions’ on the brain and no active ones on the spinal cord. He said that it is “probable” MS. They were going to do a spinal tap, but said that “my brain was giving them all the answers they needed.” Could it really be MS even if I am not having any symptoms?
A: MS is a strange disorder and it is not uncommon for a person to have the conditon with minimal or no symptoms. This occurs because not all parts or the brain are "eloquent" enough to produce symptoms. In addition, MS is a conditon which has relapses and remissions with the result that symptoms may dissapear even though the underlying abnormality in the nervous system does not clear. Over time, as more lesions accumulate, problems may become more apparent. That is why your doctors are anxious to make an early diagnosis so that the medications which slow progress of the condition and reduce attack frequency can be given to you.
Q: I was diagnosed in 1987, and my recent doctor told me I don't have MS, as my symptoms have not gotten any worse through the years. They come and go, and different parts of my body are affected. Could it be true that I don't have MS?
A: It would be unusual for someone to have multiple sclerosis for 20 years and have no permanent residual neurologic injury and this may be what your physician has considered. If you are uncertain, perhaps an opinion at an MS Center or a frank discussion with your current neurologist would be helpful. There are conditions which mimic ms.
Q: I have Secondary-Progressive MS (SPMS), and was diagnosed in 1998. Prior to having the MS I had Central Nervous System (CNS) Lupus. I had Cytoxan for the Lupus and everything was good. My new neurologist found what looks like CNS Lupus in my brain again. Is it possible to have both MS and CNS Lupus at the same time? My SPMS has been in a steady progression downward over the last year, yet I haven't noticed any of the old symptoms of CNS Lupus. What would these symptoms manifest as, and could it cause more complications faster than if I only had one at a time?
A: Sadly, it is possible to have both conditions. There may be ways to help determine the activity of Lupus. The clinical overlap between these conditions is often confusing. Treatment might well change if the distinction can be made.
This type of problem is often best resolved at a major medical center where the combined abilities of rheumatologists, immunologists, neuroradiologists and MS specialists are available. You might wish to ask your neurologist about the possibility of referral to such a center.
Q: I have had MS for 3 years with 4 lesions on my brain. I am on disability due to the chronic pain and fatigue. I have recently felt some weakness in both legs. Now my neurologist believes that I am developing lesions on my spine and has ordered an MRI. What are the consequences of MS progressing from the brain to the spine?
A: The spinal cord is a cable which connects the brain to the peripheral nerves. As such abnormalities can cause weakness and/or sensory changes in the trunk, arms and legs. What actually develops depends or where the lesions are located. It is entirely poissible to have spinal plaques of multiple sclerosis with no symptoms at all.
If there has been progression, your neurologist is likely to consider alternative treatments for you since sometimes a small but strategically placed lesion can caused considerable difficulty.
As in most aspects of the illness, course is not reliably predictable. If the disease is active as may be determined by your tests and clinical course, a change in the treatment program may well be helpful.
Q: How exactly is the type of MS diagnosed? I was diagnosed July 4th, 2007. I am a 38 year-old female...in hindsight, I was probably having symptoms for about 4-5 years. My neurologists have yet to specify what "type" I have.
A: The type is determined by the course of the condition. If you have an episode of a new symptom which improves over a period of time, and you continue to have that pattern, then you have the remitting form of multiple sclerosis. If your symptoms gradually worsen over time, then it is the progressive type. It is not rare for relapsing ms to transition to Secondary Progressive MS (secondary because it began as a relapsing type). In plainer language, the type you have is determined by the clinical course.
Q: How is it one can die of complications from MS? What goes wrong with MS that can lead to death?
A: In some circumstances, if MS worsens to the point of severe incapacity then a person becomes more likely to develop infections or respiratory difficulties. The usual infections involve the urinary tract, lungs or skin at pressure break down points. This is the exception, not the rule in the vast majority of people who have MS. Overall, there is little difference in life expectancy. I suggest you discuss your own situation with your neurologist.
Q: I am a 48 yr. old female diagnosed with Relapsing-Remitting MS in Jan. 2005. I am currently on Rebif. Recently, I started waking with cramps in my legs, ankles to butt. I know that since I started on the Rebif approximately 10 months ago I have felt aches in my ankles upon waking post dose. I attributed that to "flu-like" symptoms but these cramps feel different. Physically I am in very good shape, and I walk 1-5 miles per day. Is this an MS thing, a medication thing, or I'm just getting old thing?
A: Tightness and cramping in the muscles are common symptoms in patients with MS, particularly in the legs. These symptoms can be a side effect of interferon, typically within the first 24 hours after a dose of medication, but occasionally over a longer period. Tightness can also be related to underlying spasticity as a result of the brain and spinal cord disease, and this can be accentuated or made more prominent by the interferon. I would recommend that you speak with your neurologist about this as there are many factors that might be contributing, including fatigue, sleep deprivation, and mild dehydration, among others. Tightness, cramping, and spasticity are often treatable symptoms, and a good way to start is with a program of stretching and flexibility exercises. There are also medications that are quite effective in reducing these bothersome symptoms. Good luck !
Q: The latest PML cases have me thinking about whether or not to continue treatment with Tysabri. Is it true that the longer someone is on treatment, the more likely he or she is to develop PML? What is a reasonable length of treatment before quitting Tysabri? Also, do you have information on the number of "suspected" cases of PML from Tysabri at this time?
A: There is not "reasonable" time period to continue Tysabri since Multiple Sclerosis is a lifelong condition. To date there are 5 reported cases of PML,and 32,000 people are taking the drug. The decision hinges on your risk tolerance, the severity of your particular case, the type of Multiple Sclerosis you are dealing with (There is no useful data about secondary progressive MS), whether a pregnancy is planned, whether you have another immunologic disorder and whether you have taken or are taking other immunologically active drugs. These questions should be discussed with your neurologist. I hope this is helpful.
Q: My mother has had MS for 35 years. She is unable to do anything for herself. Two years ago she had a urostomy and before that a colostomy. She has frequent Urinary Track Infections, and the last 4 antibiotics have not cured her. She has decided to discontinue for now. Is this a good idea? Would like to read of others in same situation and what her prognosis may be. She has been bedridden for 10 years.
A: Unfortunately, it is quite common to see recurrent Urinary Track Infections in this patient population. First of all, the MS does tend to decrease the immune system. Then the indwelling catheter acts as a foreign body, which will certainly increase the risk for UTIs by getting "seeding" of the catheter with bacteria. Then you add post-menopausal and female on top of everything. We know that after menopause, the risk of UTIs increases because of vascular and pH changes of the vaginal and pelvic area.
One thing to think about is are the UTIs really UTIs. If the urine culture is positive for bacteria, but the patient has no symptoms (fever, high WBC, changes in mental status or MS symptoms), then this is not a UTI, but rather bacterial contaminant. Anyone with a catheter in place for more than 3-4 days will naturally have bacterial contamination. On the other hand, if the urine culture is positve for bacteria and the patient is symptomatic, then that is an infection and needs to be treated.
Often, what would normally be routine antibiotic use for a typical UTI may not be effective for a UTI in an MS patient with an indwelling catheter. These patients may need up to one month of antiobiotics, instead of just a 7-14 day course.
Other things to consider - how often is the suprapubic tube changed. Perhaps it could be changed more frequently. Also, cranberry extract tablets 2-3 times/day with meals can help decrease the risk of bacterial adherenence.
Finally, you always have to consider other causes of recurrent infections - things such as stones, tumors, bladder diverticula. If not already done, this patient needs upper tract studies and cystosopcy.
Q: I have MS, and I am having problems with pelvis and bowel prolapses. I had a hysterectomy with my ovaries removed, a rectocele repair, a rectal prolapse repair,and now I have another rectocele, and a sigmoidcele. Could these be symptoms of my MS? I had a defograpy, now I am going to have a barium enema test and a manomentry to see a better picture of where the problem really lies. I know this can ony give me an 80% prognosis. What are your thoughts on this?
A: This set of problems sounds to me as if you have physical problems with urinary and bowel control that are not due to MS, but are related to muscular control in the pelvic muscles. I suppose MS might be contributory, but on the whole I would go along with the advice of the surgeons, urologists, and medical people that you are seeing. They can probably tell you better than anyone else.
Q: I am 52 years old and was diagnosed with MS several months ago. Right now my symptoms are tingling/burning sensations in my right hand, and in the thumb and index finger of my left hand. I am not on any medication.
My husband and I have been working in Indonesia and the southern Philippines for 18 years. It is hot and humid year-round (80-95 degrees with 80+% humidity). We've been back in the US for 1 1/2 years, and planned to move back to the Philippines. I've read that MS symptoms get worse when the body gets overheated. I've experienced this in regards to using hotter-than-usual water for washing dishes or taking a shower.
My question is: Does the degenerative nature of MS progress faster when the body is often overheated (as is the case in a hot climate), or do the current symptoms just get more pronounced?
A: It is common for MS symptoms to become more prominent with any increase in body temperature, as can be seen upon exposure to warm weather, with a hot shower, with fever, with anger, during or after vigorous exercise, or even after drinking a hot beverage. This temporary worsening or precipitation of symptoms is called an Uthoff's phenomenon, described by Wilhelm Uthoff in 1890 in patients with optic neuritis who experienced temporary worsening of vision with exercise. This effect most likely relates to a heat-induced slowing of nerve conduction in patients with demyelination.
By definition, this is a temporary and reversible effect that has no effect on the natural history of the disease and does not result in new lesions on MRI. The key to managing this temperature effect in MS is to be aware of the phenomenon and take precautions as needed. There is no problem with living in a warm climate as long as, for your own comfort and symptom management, you take precautions to guard against protracted overheating. Simple cooling measures such as taking along a bottle of iced water on a walk outdoors and using air conditioning when feasible can help avoid the fatigue and other symptoms that are common with a rise in body temperature.
Q: I am a 44-year-old female (2nd MS diagnosis in Oct. 07) and I have recently been experiencing hot flashes. Unfortunately, these hot flashes started during my Rebif titration period. My doctor cut my full dosage in half (thinking that it was side effect related), but I actually believe that my dosage was probably fine and the hot flashes (especially at night) are related to periomenopause and not my Rebif. I missed my menstrual cycle this month and I am unable to pinpoint the cause....stress, Christmas, exhaustion, new medicine or periomenopause? I take pain relievers before I go to bed and when needed during the day and I have also taken Celebrex prescribed by my Neuro and the flashes still occur day and night (every day, not just shot days). Any ideas? I'm almost afraid to mention it now, I like Rebif and don't feel that it is the culprit.
A: Hot flashes" are a common symptom, particularly in our female patients, and not always related to multiple sclerosis or its treatment. Side effects related to your interferon dose will peak in most patients at about six hours and can persist for up to 24 hours. Fever, chills, headache, sweats, and hot flashes are all reported as possible side effects. If you can temporally relate the hot flashes to your interferon dosing, it might very well be a side effect, though in my experience, this would be unusual at a low dose. Alternatively, it is possible that this symptom is hormonal and related to perimenopause or other non-neurological factors. If you find the hot flashes disabling and need to settle this issue, you could briefly discontinue the interferon and see if your symptoms persist despite withdrawal of the interferon.
It is also important to recognize that although any increase in body temperature can result in exaggeration of your MS symptoms (the Uthoff phenomenon), this increase in symptoms is completely reversible and not indicative of worsening of your MS.