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Question:
I have been to two neurologists and have gotten 2 MRIs. Both have been abnormal MRIs. They tell me they believe its MS but they are not sure. Everywhere I go they have not confirmed that I have MS. I am a 22 year old student and the symptoms I currently experience are right head and right eye pain and some blurriness at times. I had other symptoms 2 years ago that were all MS symptoms according to my doctor but I stopped thinking about this disease and change my lifestyle, I lost weight and ate healthy and experience no symptoms at all for 2 years! Until now again. I feel tired most of the time and always sleepy. I come from a Latino family and have no family history of this disease. I am scared to start medication because besides these symptoms I feel fine. I have a new appointment with an MS expert in SD in a month and if he confirms MS, I will need to start medication. Will the medication make me feel better or make me worse? Thank you so much for all the support and for answering questions. Answer: Those are all good questions. If you end up seeing me in San Diego, we can address them in more detail. Here are my brief responses: 1. MS is really a clinical diagnosis. MRIs are confirmatory in the correct clinical context only. They are also somewhat useful to prognosticate the severity of the disease. Please read my earlier blog on establishing a diagnosis of MS. READ BLOG 2. It is actually typical for patients to improve and remain stable for a while only to have symptoms return. This is why we refer to the symptoms as relapsing-remitting. 3. There are many good treatments for MS but all are, by and large, preventative. This means it most important to start treatment BEFORE problems develop. 4. Some treatments can restore function and improve symptoms but responses, especially early in the course of the disease. Revere (Rip) Kinkel, MD Director of the UCSD Multiple Sclerosis Center Question:
I have had many symptoms of MS for years, and there is MS in my family. However my MRIs have reportedly been "normal" with the exception of my last one. It was done on a 1.5 Tesla machine and showed possible demyelination on the right optic nerve. Could this be a sign of MS? Answer: This is a difficult question to answer without more information. The optic nerve is difficult to image by MRI. It is far easier to see abnormalities within the optic nerve when it is acutely inflamed and creating the visual problems we seen in people with optic neuritis, but abnormalities suggestive of MS can be seen even in asymptomatic individuals. The fact that you have experienced, “symptoms of MS for years” but repeat imaging studies have shown little if any abnormalities consistent with MS is a very good sign. That is really all I can say given the information provided. Revere (Rip) Kinkel MD Director of the UCSD Multiple Sclerosis Center Q: What are the first symptoms of MS? I know it's different for everyone but what are the most common ones?
A: The first symptoms of MS are too numerous to list and often we are not able to attribute a particular symptom to MS. On the other hand certain syndromes, defined as a collection of symptoms and examination findings occurring in a particular sequence over a designated period of time, are highly characteristic of MS. An example would be a syndrome called optic neuritis where an individual typically experiences pain in one eye when it is moved followed or accompanied by loss of vision in the same eye with maximal deficits usually within a few days, if not sooner. This loss of vision typically involves only the central area of vision, often with preserved peripheral vision. When the visual loss is partial it is typical for the individual to lose color vision in the involved eye. In contrast certain symptoms may be reported by MS patients but are very difficult to directly attribute to MS since these symptoms are often caused by other problems. These non specific symptoms include fatigue, forgetfulness, word finding problems (“tip of the tongue phenomenon”), headaches, and transient pins and needles sensations. Again, while these symptoms are common in MS patients, they are too non specific to be used for diagnostic purposes. Revere (Rip) Kinkel MD Director of the UCSD Multiple Sclerosis Center Question:
If the Epstein-Barr virus is thought to be connected to MS, is it possible that I got that virus from a woman I worked with for four years, which then led to my MS? My co-worker was diagnosed with PPMS during our first year of working together, and her husband's first wife was diagnosed with MS several years before that. This seems like too much of a coincidence. Thanks. Answer: The association between viral infections and MS have been studied for decades. Most of the studies have failed to reveal a direct cause and effect relationship. The best data suggests that if the “right” person gets exposed to Epstein-Barr virus at specific times in their life, then their risk of MS goes up significantly. So, it is not as simple as a coworker passing along a virus. The Epstein Barr virus is ubiquitous – it could come from anyone and usually someone with close contact to a person, not a casual co-worker. Beyond this, it is worth noting that MS is actually a common disease. With a prevalence of 1 in 900, it is rare for a person in the US NOT to have contact with people with MS. Thus, while there definitely could be a link to meeting people with MS, the disease was probably triggered years before that meeting occurred. 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 Here is My Question:
Due to vertigo & dizziness, I was given a Tilt Table Test, which was positive, as well as caloric and rotator chair tests that point to vestibular pathology and nystagmus. However, my MRI was clear. Could MS be a possibility? Answer: Most likely your symptoms correspond to vestibular pathology making MS a less likely explanation. In particular with a normal brain MRI, I simply suggest you to find a good ENT physician (Ear/Nose/Throat) and perhaps a good physical therapist for vestibular rehabilitation, and eventually do surveillance brain MRI in the future if symptoms persist or worsen. I hope this helps. Augusto Miravalle, MD University of Colorado, Denver PLEASE NOTE: The information/opinions on this site should be used as an information resource only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition. Here is My Question:
Can you have MS and not have lesions in your brain? I was diagnosed 16 years ago after years of being called "suspect MS". I had oligoclonal bands present in my CSF, documented by an Opthalmologist - Optic Neuritis, numerous symptoms and was diagnosed as having RRMS. After a number of IV steroid 'pulse therapy' sessions I was started on DMT's in 2001. I have had 3 major relapses since and a number of smaller ones. My neurologist died and I inherited a new one who says I can't have MS if I don't have lesions in my brain. I am very confused and scared. Answer: While it is certainly rare to see individuals with MS who have normal MRI scans of the brain, especially after many years, it still occurs. Whether or not your MS is at all similar to typical cases of MS is another question altogether. One condition that should always be excluded is neuromyelitis optics, also called Devic’s disease. This condition used to be considered a subtype of MS but is now considered an entirely different disease. Devic’s disease often involves only the spinal cord and optic nerves, and may worsen if you are treated with an interferon. There are other possibilities as well and you should work with your neurologist to sort out these diagnostic issues. If required, you may need to travel to an academic MS center for another opinion. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Q: I was admitted to the hospital with symptoms...had a CT scan positive result for MS but was then told that my MRI showed no MS. I am still suffering symptoms. I never had a spinal tap to confirm. Could I still have MS? I have had bladder incontinence for months, bowel problems, and now suffer left leg muscle weakness. I was put on steroids that eased symptoms but am still suffering weakness, tingling hands, feet, and face. Please help looking for answers.
A: Establishing a diagnosis for neurological problems is complicated; at a minimum it requires the skillful elucidation of your history, a detailed examination and correct interpretation of your diagnostic evaluation. Some of the statements is your question suggest at a minimum either misinterpretation of your diagnostic evaluation or failure of the doctors to clearly explain their findings to you. I would strongly suggest another opinion if your current doctors have not been able to either provide you with a diagnosis or give you an adequate explanation for your symptoms. It would be difficult if not impossible for me or any doctor to provide any further help without seeing you. I don't know where you live, but there are excellent clinics across the country with physicians who specialize in MS. You can use a listing from the NMSS website as a starting point to find an MS clinic in your area...CLICK HERE. This link allows you to enter your zip code and click on "Centers for Comprehensive MS Care." If you let us know where you live, we might also be able to provide some guidance. I also suggest reading the links below in preparation for getting a second opinion: http://www.healthcarejourney.com/physician-blog/the-diagnosis-of-multiple-sclerosis-ms http://www.healthcarejourney.com/physician-blog/how-to-prepare-for-a-visit-to-your-ms-specialist-the-present-and-the-future Good luck -Rip Kinkel, MD The short answer is "no". There is actually no age limit in the diagnostic criteria for MS. Most individuals diagnosed with MS are between the ages of 20 and 50. Although this age range is most common, children as young as 2 years of age have been diagnosed and I have personally seen a patient in her 80's coming to medical attention with a first clinical attack. When an individual experiences the first recognized symptom of MS after the age of 50, we call this "late onset MS".
Even though there is no age criteria for the diagnosis of MS, a stipulation of the criteria warns that the physician needs to rule out alternative diagnoses that could mimic MS. That is not to say that every reportable mimic needs to be tested for (that would be quite expensive and submit many patients to unnecessary testing), but your personal story and neurologic examination can quickly rule out many possibilities. It is also important to remember that as we age, all are susceptible to common health problems including high blood pressure, diabetes, high cholesterol, vascular disease, etc. Patients with MS are no different, and as you may imagine, the diagnosis later in life can be more difficult to tease apart from problems of older age. If there is ever a question about a diagnosis, it is completely acceptable to seek a second opinion from an independent MS specialist. -A. Scott Nielsen, MD How can I differentiate between PPMS and Multi-system Atrophy, which is a secondary diagnosis?5/5/2014
It would be very difficult to diagnose Multiple Sclerosis and Multi-system Atrophy (MSA) in the same person.
In my experience, the main reason for confusing these two disorders is misinterpretation of MRI findings and an early incorrect diagnosis of MS that is not corrected once it becomes clear that the correct diagnosis is multi-system atrophy. --Rip Kinkel, MD Question:
How is it determined when your RRMS changes its status to the progressive MS diagnosis ? I see my daughter's baseline decline, yet she still has the RRMS status. Answer: When a person develops progressive MS after an initial relapsing remitting course, we call this secondary progressive MS (SPMS). Determining the onset of SPMS is very difficult; in most cases we observe a patient at multiple visits over a period of time, usually 1-5 years, and eventually decide that they are now secondary progressive. There are certain features that suggest secondary progressive MS but all that is really required is progressive worsening of impairment without significant improvement or an alternative explanation over an interval usually in excess of 6 months. Typical but not required features of secondary progressive MS are the following:
Rip Kinkel, MD Question: I originally had vision problems in 2000, along with a normal Visual Evoked Potential (VEP). In 2001 I had my first go around with severe spasticity in both of my legs. By 2003 my 2nd VEP came back abnormal. During these times my brain MRI's as told to me were normal. Due to financial problems, I was unable to have another MRI until 2013. My brain MRI showed white spots, and my neurologist said "those are MS lesions" when she looked at the prints, but when she looked at my MRI on her computer she then said "No, those are pockets of spinal fluid". With my spine MRI the orthopaedist said that "No, they were not of bone matter", and did not know what an MS lesion looked like. My neurologist seems to think they are "bone". My orthopaedist stated I do not have buldging disks, herniated disks and have a very very mild degenerative area in my hip, "but not enough to treat". My neurologist went strictly by the written report of so called "clean MRI" via the radiologist. What do you think?
Answer: It sounds like you’ve gone at least 14 years without a definite diagnosis of MS and even now there are questionable findings on your diagnostic evaluations. Usually, this is very good news and means that even if you do have MS it is a relatively mild form of the disease. Of course there are exceptions to this rule and you should be evaluated by an MS specialist. Amazingly, there are not a lot of trained MS specialists so you may need to check around your area or even travel a ways to find one. It is hard for me to give you any more advice without knowing the specifics of your case. To find a trained MS specialist in this area, click on this link from the National MS Society (NMSS): http://www.nationalmssociety.org/Treating-MS/Comprehensive-Care/Find-an-MS-Care-Provider/Partners-in-MS-Care Good luck and feel free to give us some feedback after seeing an MS specialist. Multiple Sclerosis with a totally normal MRI is unusual in this day and age with the technology available. There are several ways that a person can have MS with a “normal” MRI: 1. The MRI is technically inadequate 2. The MRI isn’t really normal; the doctor reading the MRI is wrong. Often what the doctor really means when they say it is normal is that the findings are not diagnostic of MS 3. The MS is confined to the spinal cord, optic nerves, or other regions difficult to image 4. The MS is atypical or another condition all together Other tests may be useful if the MRI is not diagnostic of MS. Depending on the circumstances it is sometimes best to observe how a person does for a while before plowing into further testing, but this may not be possible if the person perceives their condition is worsening. Before plowing into more testing, it is also useful to get a second opinion. Hope this helps --Dr. Kinkel Question: I was diagnosed approximately seven years ago by my neurologist with 'primary progressive'. In the years since then in much of my reading I see reference to 'secondary progressive' My question is: Does 'Primary Progressive' evolve into 'Secondary' or are they two separate types?
Answer: This is a good question; the easy answer is that primary and secondary progressive are meant to be different disease types, but this may not be entirely true. Years ago a bunch of MS experts sat around a table and came up with clinical definitions of MS disease types. The four types agreed upon were relapsing remitting, secondary progressive, primary progressive and progressive relapsing. The reason for defining disease types was as follows:
So this clinical classification scheme was developed and applied to all clinical research studies to characterize patient populations.
What we really need is a way to differentiate disease types based on pathology and mechanism of injury so we can use this information to apply the correct treatment to the correct person. Hope this helps --Dr. Kinkel Q: I am 18 years old. A few years ago my vision started getting bad and I started to get a lot of floaters in both eyes. I went to a retina specialists and he said it was probably caused by some type of auto immune disease because I had a lot of inflammation in my eye, so we did a bunch of tests for stuff like Lyme disease and a few others. They all came back negative and he said that it could possibly be MS but I didn't have other symptoms so we just kind of figured there is really nothing we could do. In the past few months I've experienced a lot of weird symptoms. A big change was bladder problems. I had to pee way too much and especially at night. And I had a feeling of it not being completely empty and also a hesitancy to urinate. Another symptom was one of my legs felt very weak and just felt really strange,and this lasted about 3-4 weeks. I also have found that my speech has changed, I tend to have trouble saying stuff or articulating my words, sometimes even slurring them. I am planning on getting an MRI when I go home for spring break from college but my question is do you believe that these symptoms are an indication that I could possibly have MS?
Answer: Those are great questions. I can certainly understand why you would be concerned about MS. In fact there are many things that could be causing your symptoms. An MRI scan of the head and spinal cord as well as a trip to see a neurologist are definitely the first steps and should be done during your Spring Break. Keep us posted. We’d be happy to see you if you are anywhere near San Diego --Dr Kinkel PLEASE NOTE: The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition. |
PLEASE NOTE: This information/opinions on this site should be used as an information source only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
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