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  • Pain is one of the most common MS symptoms. How do you manage your pain on the bad days?

    What if teeth clenching could actually be CAUSING MS? "In 2010, Williams et al. published a breakthrough real-time study demonstrating marked lateral displacement of the temporal bones in MS patients during bruxism (Ref). Using a pulse phase locked loop (PPLL) device, MS patients were found to have a bilateral temporal bone displacement six times greater than healthy controls during a sustained clenching force of 100 pounds of pressure. It was hypothesized that reduced bone density in MS patients can increase the displacement along the cranial sutures, possibly allowing skull bone deflection to create damaging pressure waves." You can read more about it here:

    My husband was just recently diagnosed and this is all very new to us. I have read a million articles, treatment options, etc. and I am very lost. I am looking for some "real life" information. At this point he did a five day infusion of Solu Medrol and felt terrific until three days after. We have an appointment with a doctor that specializes in MS hoping for some better information and a rx plan to follow (the current neurologist is a bit overworked and doesn't really take the time to explain much). Any suggestions on specific things we should ask at the next appointment? Tips or tricks for fatigue? Any information would be greatly appreciated!! Thanks in advance.

    Hi! I'm 33, but have had MS since age 17. Recently joined because I've realized I have no real support. Also I have no other MS friends, and it's always great knowing someone "gets it".

    I am a new member to this forum. I don't have an MS dx yet but am searching for answers. I am a 48 year old female. Have never really had any health problems up until October 2016. At that time I started having pain in my right hip and was taking Tylenol and Ibuprofen. Wound up going to the ER one morning because I was trying to get ready for work and almost fell down the stairs due to my pain. After a CT scan of my lumbar, was told I had spinal stenosis, bulging discs, was given a scrip for steroids, Tramadol and Flexeril and to follow up with a orthopedic doctor. Was given a Medrol dose pack to try to help with pain and inflammation, which didn't help. Wound up having a steroid injection for pain management, which didn't help. I was off of work for 5 weeks. Went back to work, RN was a nurse manager at a nursing home, on light duty to work about 5 hours a day, figuring I could take frequent rest breaks. Well, the day I went back, the DOH came in for annual survey, so needless to say the frequent rest breaks didn't happen. And then the second day was worse than the first, I was on my feet the whole time at work and by the time I left work, I was having spasms in my legs and severe pain and had to pull over a few times on my home, which was a 45 minute drive on a good day, crying most of the way. Once home my husband helped me get in the house, applied ice, took Flexeril and Tramadol. Eventually the spasms and pain went away and I was able to sleep well that night. When I woke up the next morning, I was unable move my legs and couldn't feel them. Off to the ER again, local ER thought I had a herniated disc and sent me to another hospital. I was there 8 days, no herniated disc, after multiple tests, had no definite diagnosis of cause, eventually regained ability to move legs and stand and then walk very slowly. Went to acute rehab for 2 weeks, then outpatient rehab, then eventually back to work. This time I was working on the floor due to being off so long, they had to hire another nurse manager. Then decided to look for another job, closer to home and not doing patient care or pushing a heavy medication cart. Then after a year moved onto an Assistant Director of Nursing at a nursing home, and eventually promoted to Director of Nursing. So in December 2018, I started having extreme pain, was at ER 3 times in 4 days, nothing significant with my spine was found. Started outpatient therapy and continued to work. End of January 2019, finished a session of therapy and had tingling in my legs and then my arms, was barely able to walk, son drive me to ER. They didn't have any clue, so sent me to a hospital in city, not any answers. They eventually did an MRI of lumbar and nothing significant found. Developed severe headache after a couple days, did an MRI of brain and cervical without contrast, nothing significant found at that time according to report. But I got a CD with the MRI's on it and there are a couple of bright areas noted in occipital lobe. Then developed severe chest pain and tachycardia, felt like someone was giving me a tight hug, hospital did a CTA of chest to rule out PE and aortic dissection. Gave me Morphine IV and chest pain and headache went away. MD's came in the next morning and told me they were discharging me. I could barely walk and was in pain my legs were tingling and I cried the entire way home. Employer fired me a couple days later, because I had asked for a leave of absence so I could get addition testing done. That was the beginning of February 2019. Had echo, NCV/EMG, pelvic ultrasound, 24 hour holter monitor, 2 week heart monitor, tilt test, blood work. EMG/NCV study results came back with neuropathy, and decreased nerve reactions in legs. The end of March 2019, woke up and couldn't move my legs, called squad, took me to ER, sent me to a hospital in the city and did lab work, but no other testing. Saw a neurologist a couple times, was discharged and sent to acute rehab for 11 days. While there, went to neurologist appointment that was originally set up from prior hospitalization and that is when I was informed of the neuropathy and indication of pinched nerves, started on Gabapentin, which seemed to starting helping the burning pain in my legs. While at that appointment and the neurologists I saw while in the hospital, they all did neuro exams on me, and when I couldn't respond normally they would all keep having me repeat it until they got some response. For example, reflexes, they would keep testing the reflex in knee or ankle until there was a response from me. In the past months since December, I have been told there is nothing wrong with me, heart checks out fine, women parts check out fine. I was told by my PCP, I am depressed, its in my head, I have anxiety. And offered antidepressants, which I refused. I have been researching various things, because my gut tells me something isn't right with me. I have noticed in the past year my memory isn't sharp like it use to be, I forget where I put things, I forget what I went to the store to get. I fall often, though this week has been good. My legs hurt, more so than normal, I was been doing a few things outside, but the pain isn't muscle pain from overuse, it just feels different. I have tingling in my legs, pelvic region. Numbness in my legs and I drag my foot sometimes. A couple weeks ago, I started being incontinent of urine, went to the ER the next day, because I didn't want to delay if it was compression of spinal cord. They in turn contacted neurologist, did an MRI of lumbar without contrast and was told to just go home and wear diapers and follow up with a urologist. I chose instead to contact Cleveland Clinic and was able to get in with a spine specialist the next day, who after going over symptoms and history, was told it was most likely irritated nerves and started me on Baclofen twice a day. After a few days the incontinence went away. I still haven't made an appointment with urologist, don't think my problem lies there. I'm not sure where to go from here, I know that I most likely need a lumbar puncture for MS dx along with an MRI of brain and spine with contrast. I am sorry this is so long, but hoping to get support and advice as to where to go from here.

    Managing relationships can be tough enough. Adding in MS just adds another dynamic. Do you have any tips on managing MS and relationships? Share here!

    I am currently undergoing testing for MS but they also considered lupus due to having a positive ANA but all other lupus related tests came back negative. I do have a corpus callosum lesion so MS is a possibility. I was wondering if any of you had high total protein as mine keeps coming back elevated. Or any other off blood tests you had in your journey to diagnosis. Thanks!

    Hello, My pain management doctor is retiring that part of his practice. His practice is in Seattle , WA and I live in Portland, OR. I am willing to travel some for a great doctor. Do any of you in or near the Pacific NW have a pain management doctor you would recommend? I still see a Neurologist in Seattle, but I am his last MS patient. The rest have the same illness that Michael J Fox has (sorry, cant seem to find the word for it, lol). Right now, I am starting with a general pain management clinic in Gresham, Or., The first thing he did was take my morphine and reduce it by 1/3 without really looking at anything. I do not have much confidence in him at this point. He is also telling me that he isn't getting what he wants as far as paperwork from my doctors and wants me to press them. Is this normal? I thought once a patient signed the release, the doctors could communicate what they wanted and needed. My charts are huge so I don't understand why he is saying he just wants the last few visits and is saying that he does not have enough. I called to make an appointment yesterday and left a message. It is almost 1pm today and I have yet to hear from them. As far as I can tell, it seems this is not going to be a clinic that I will enjoy working with, especially since he wants to see me every month. Any advice is appreciated! I have only ever worked with one pain doctor in the last 13 or more years. Thank you! Kristina

    I have often read, heard, or seen where people talk about songs that touch them, and have taken a rather cynical view on this. I like to listen to music as much as the next person, but it was always just a catchy tune that you could sing along to, never really meaning anything anything deeper. Since the passing of my beloved princess Tracey, though, I have found music to be a great comfort. Three songs in particular touch me, and I would like to, as a tribute to her, talk about them. Tracey had no exposure to country music before I met her. When we lived together in her apartment in Manhattan and began commuting every weekend to my house in Pennsylvania, I would have a country station on, and if there was a song I liked I would sing to her. The first song she took a liking to was "If I die young" by The Band Perry. This became her favorite song, and we would sing it to each other whenever we heard it. I play that song often now, and ponder the irony of it, as she was only 51 when she died. A favorite song of mine that I feel connected to is Ronnie Milsap's "I wouldn't have missed it for the world". I think of all of the times we had together, many of them very difficult, especially towards the end, but I am sorry for none of them. Our time together was perfect, and I am so glad I was able to enjoy it with her. The third song I would like to mention is "The Dance", by Garth Brooks. I know that song has almost become a parody of itself because it is so over-referenced. But this is the one song I cannot get through without tearing up and breaking down crying. I make sure that I listen to it every day, sometimes several times, to gauge my recovery. Do whatever it takes to mourn the loved one you cared for. Be open to the advice of others, but understand that ultimately you, the caregiver, that will determine how you will move on. Thanks to all who listen. I hope I can be of help.

    Hey there guys, My name is Robert Welsh. I'm 29 years old and currently being treated for my first big flare up of ms at swedish medical center. I don't have a 100 percent diagnosis as of yet but should shortly. My symptoms started in my hands with numbness in every digit and progressed to lhermittes sign which is very odd for those of you who haven't experienced it. These signs where followed by a intense brain fog and forgetfulness and week right leg. I'm super optimistic about this. I'm not going to let this thing take me down. I love motorcycles and more specifically dirt bikes. I started my addition at the age of 8 and eventually got into racing motorcross. Is there any of us out there that still ride? I understand and am okay with the fact that I might need to calm it down a little bit as far as how agressive I ride. But I most certainly not going to give it up completely.

    Hey all, I’m heading to my neurologist soon go be looked at. Just wanted some input as you whether or not you think this may be MS, as I suspect it may be. I’m a 22 year old male. Back in October, and a few times after that, I had sensations of numbness in my face. They would last for about an hour or so and then go away. I haven’t had that in a while. Back towards the end of March, I started having twitching in my left eye. The twitching was strong at first, but has since gotten better. However, I still have it. The vision in that eye seems worse now, and harder for me to focus on things with it. I’ve also noticed color differences between my eyes when I close one on occasion. Some colors look duller in one eye and brighter in the other. Last week, I started experiencing twitching in my right arm and left leg. Now my calves and feet twitch constantly, and other parts of my body randomly twitch. I have weird sensations in my arms and legs, almost as if they will be weak when I move them or a sense of fullness. However, when I do move around, I don’t have any weakness. I was looked over yesterday by my general practitioner, who noted normal reflexes and no clinical weakness. A few weeks ago, I had a feeling of numbness in my right foot, in its right side. I still feel as if I have less feeling there than I do on my other foot. I’ve also had difficulty swallowing and a feeling as if something is in my throat. I also feel as if small pieces of food get stuck when I swallow. I should note that I have multiple herniated discs on my spine. So I don’t know if that could be causing all of this. Thanks in advance!

    Hi everyone 👍, as you know I’m new to this forum so I’m just feeling my way round. I’ve had MS for a good while now and I’m finding it really difficult, I’m not getting any help from anyone so dealing with this really gets me down. I’ve tried talking to my doctor but he just passes me off to other professionals and when i see them it’s just pure negativity, I’m going to follow this forum with hope of talking to other people with the same conditions as myself and hopefully learn things that may have passed me bye. At this moment in time it’s really hard because my MS is digging in and coarsening me problems but the worst thing is my landlord has given me 4 weeks to leave my flat because he’s selling up and when i involved the council they said i wasn’t a priority so there wasn’t anything they could do, so in a few weeks from now I’m on the street with MS and confined to my wheelchair. Not a lot of justice in the world these days ( well that how it feels anyway) .

    I am a bit disillusioned at the moment. I am having yet again another bladder infection and I am really run down. My line manager at work has just given me loads of work, more than even a healthy person could manage. I did discuss the issue with him on several occasions, but he does not want to listen. He knows about my MS, but somehow do not understand, that 40 hours plus doctors appointments and so on is a lot to take on. I feel really exhausted and all my sister has to say is, that I should just pull myself together and get on with it - on one occasion describing me as being weak. My partner tells me that, I should think more positive. In fact, at the moment he is thinking of leaving me, because I am not enough "fun". While ignoring the fact that maybe him getting hardly any work (he is a freelance designer) is the main cause for his unhappiness. I am trying my best to get on with life, even when walking is difficult, my bladder is all messed up and I am just tired most of the time. I know it could be worse ... but still. I just wished that sometimes, people would be a bit more compassionate and think before they speak. I guess they are just as scared as I am ... and do not know how to respond differently. But that makes dealing with MS a lonely business at times.

    As a caregiver, you’re providing support to a loved one. But, finding support for yourself can sometimes be so difficult. Share your experience as a caregiver and talk with others who are also caregiving for their loved ones.

    I haven't been diagnosed. I'm still waiting to see the neurologist, but I wanted to check in on a recent issue I had with my eye. I should mention I had an eye exam recently and was wearing a trial pair of contacts for the last couple of weeks. I have a very high myopia. Last week my right eye started to feel very uncomfortable. It felt like it was burning or like when I have a fever and my eyes get that stinging sensation. I figured it was dry eyes from the contacts and started wearing them less throughout the day. Then this past Tuesday I finally gave up by lunch and put my glasses on. Then in Wednesday I had a very sudden sharp stabbing pain in and around my right eye. I was so severe I had to stop what I was doing while tears streamed down my face. Thankfully I was brief, only about 30 seconds. But ever sense I have had a dull ache around my eye. Also, because I originally started this process by seeing an ENT for dizziness and was given the diagnosis of vestibular damage (because he couldn't find anything else) I have a list of vestibular exercises I am supposed to do. The one that involves crossing my eyes causes the muscles in my face under my right eye to twitch or spasm. I am just curious if anyone with an MS diagnosis has experienced anything like these symptoms?

    I've had some issues with spasms in my ear, usually with high pitch noises but sometimes even my own voice causes it. I looked it up and found that it sounds just like Tensor Tympani Syndrome. I am just wondering if anyone else experiences this?

    Can anyone recommend forearm crutches for a woman that are well made and do not weigh a lot? I also would like to spend under $200.

    Hello to all. 47 yr old female w/numbness/tingling in right hand and arm; major brain fog; problems at times with my balance and walking; vertigo; ringing in ears; extreme fatigue (for a long time now). Struggling at my 40 hr week job, demoted this week due to errors/performance (this is a 1st for me); as the week goes on I literally feel like I'm going to drop. EMG done this week....normal. Neuro said it points more to a central nervous system problem? Vit B at 474 pg/mL Neuro said this is normal (her range is 211 -950)? MRI scheduled in 6 days. Afraid of results or lack of results, as this is not "in my head" it is real. Neuro has referred me for cognitive testing also. So confused and scared, as I am the breadwinner in my household since my husband had to retire 6 yrs ago due to chronic health issues. What questions do I need to ask the neuro? She seems to be very proactive, but I am still at a loss. Thank you for listening, Much Love, Dawn

    Hello All!

 Last June I began having itching and a tingling feeling of my tongue, my PCP noted low vitamin b12 so we assumed all symptoms related to that. In late October I had The nagging feeling that there was something stuck in my shoe at work but nothing was ever there. That feeling progressed to a tingling that over the next few days led to tingling and weakness in my entire L arm and L leg. I am a registered nurse and coincidentally work in Neurology, so I made an appointment with a Neuro who ordered a brain/spine MRI. The MRI showed lesions on my brain, but none on my spine and no other tests (besides my physical exam) showed anything. I currently have what my doctor calls a “working diagnosis” of RRMS, stating she believes we caught things so early that nothing else is showing up.  At this time my physical exam shows 4/5 strengths on my L side with hyperteflexia in all areas and a positive Hoffman’s sign on the left. I’ve recently noticed the hyperreflexia seems to be getting worse, it seems that something can hit my leg slight heavier than a normal touch and it causes a reflex reaction. I’ve also started having muscle spasms in my legs, most frequently my feet. They’re never more than a millisecond and not painful, my feet just randomly jump. Has anyone else experienced something similar to this/these symptoms? Were you eventually diagnosed or was something else found? 

Thanks in advance!

    Hi. Im new here. I didn't know where else to go. I've been seeing a neuro since almosta year ago. Last year i had some mris done. My brain report just said unremarkable mri. I just had another done and the terminology is different. It says no previous similar white matter lesions indicating demylinating disease. So does that mean the same as unremarkable? Im confused by the wording " no previous similar".... Then it says impression normal. Can someone help me because I'm not getting help from my drs. I had this test repeated because on top of my previous pain and tremor and memory symptoms ive recently lost bowl control and started having tingling in my face. I also have a positive babinski in my right side and a flattened nasolabial fold. Im just so frustrated.
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