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

    Hi! I was diagnosed in 2001with RRMS. However, I have been declining the last 3 yrs, severely the last 6months. I had 6 new lessions within 12 months and was diagnosed with mild-moderate neurocognitive disorder secondary to ms. I seen my neurologist on Tuesday for him to be in the room for 2mins 55 seconds! I have so many questions and concerns and feel very rushed when I see him. Therefore I feel it's time for a new neurologist. Can you give me some tips on what to look for / screen when making a commitment with a new dr so I'm not in the same situation as I am now? Please and thank you.

    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!

    About 2 years ago my husband (37) was diagnosed with MS. It was only a couple months after we got married. After 4 months he spiraled down and (TLDR) kicked me out of the house. We've been going to couple's counseling since his diagnosis. At his worst, he had a complete personality change, wanting divorce, and being very aggressive. This changed once he got put on some different anti-depressants. He's been unable to work because of his MS and feels useless. He has been able to work on some of his art, but that's not a steady form of income. He's in the middle of processing disability insurance. Right now his parents are helping him with income, he's still on my health insurance, and we still go to counseling together. He now says he doesn't want to stay married because he's broken. Why I'm posting : He's been diagnosed with depression and expresses the classic signs. His family and I don't know what to do anymore- his depression really gets in the way of making progress with him dealing with his MS, and our relationship. We still love each other very much. If he didn't still love me I wouldn't still be in this. Anyone have any advice? I realize this is a bit of an extreme situation. The reason I haven't run away is that our love is still there- we've both acknowledged it. I'm vitally important to him for a number of things. His family and I don't have experience dealing with a loved one with depression, and could really use some advice on how to navigate someone who won't ask for help, feels useless, and will need care. What we're doing now isn't sustainable.

    Hi, I've gone to an er twice in 5 weeks and they are sure that I have ms. Due to insurance problems I haven't been able to see a neurologist yet. I start my new insurance in a couple days. I was wondering when searching for a doctor what are some good questions to find out if they are going to be a good doctor for me. I've rarely gone to see doctors my whole life so I don't know what I should be looking for. Thank you for any and all help.

    The very first MRI I had back in 2009, when my symptoms began, was examined by a neurologist, which he found a "small, nonspecific lesion" and mentioned I should keep a watch on it with future MRIs. My symptoms then started as left-sided, mild hemiparesis and left unilateral paresthesia. I noticed it in my left thigh, and it gradually radiated down to my left leg and up my back to the left arm. Of course, at the time like many others with unilateral hemiparesis/paresthesia, I thought I was having a stroke. The constant "buzz" and weakness persist for several days before dying out and transitioning to a chronic but transient reoccurance of the same symptoms, but albeit very faint in comparison to the episode that lasted several days. This transient buzzing has never stopped since. One later in 2010, I experience what I believe was the Lhermitte's Sign. I was talking to a customer and leaned my head to the right, about 45 degrees, which then triggered a painful electrical shock jolting down my neck and right side. My grimacing and wincing response to the pain was outwardly noticeable, as the customer asked if I was all right. I told them I was fine, of course, even though my neck and side was burning with the aftershock of the jolt. This carries on for about a year every time I tilt my neck in that same position. Then, two months ago was the doozy. 6 years after my first episode, I experience what I believe is my second full-blown episode. At first, I believed it was a migraine aura with the whole nausea, faint spots in front of the eyes but not enough to cloud vision entirely, and a tension headache. This builds for an hour until I'm released from class and drive home. As soon as I get in the house the spots get bigger and explode into white. They are becoming so opaque, big, and numerous, that I cannot even see to read my textbook. This continues for an hour before my left side explodes and lights up. This is no longer the ignorable and tolerance faint, transient buzzing. The intensity of the paresthesia has increased to a painful level, and I now begin to notice a clear division between my flaming, electric left side and my normal, unaffected right side -- from my scalp to my toes. Realizing that this was no migraine and that it was episode number 2, I begin to write every symptom thereafter. As this is already lengthy, I'll sum that symptom list up. The next day, the total numbness and weakness kicked it. It affects my walking so much I end up with shin splints in my lower left leg within two days. The total numbness and weakness last for two days, and it transitions back into more of the paresthesia. Although every area of my left side was fair game, it kinda came and went like Christmas tree lights set on blink so that a group of lights light up, then fade, then another group lights up, then fades, and so on -- several localized areas of my skin "light up" then fade as other areas begin to "light up" and fade just the same. I actually kinda thought this part was pretty interesting and cool, hah! Then after a day of Christmas tree paresthesia, it fades into similar normal transient buzz, but with greater intensity this time -- more on pair with the intensity of the first episode. And that's kind of my story. I had a second MRI a year after my first episode, which the radiologist and my primary said was normal. When I told him about the lesion that the neurologist found, he said he didn't see it. I just had my third MRI done last week, of course because of this 2nd episode, and it was normal as well. I'm still waiting on an appointment with my new primary to cover the specifics, but I can't help to feel extremely deflated and disappointed at this time, and I'm just so very confused as well. I'm currently in nursing school with a year and a half left, so this second episode is just very inopportune. I had to remediate and come back to perform hands-on skills that I just couldn't do the first time because my left hand was locking up and the paresthesia flared up so bad that I couldn't concentrate. I scrawled like a baby to the instructor that day. The whole ordeal was just overwhelmingly mortifying. I just dunno where to go from here, and I feel like a hypochondriac talking to most everyone else. The neurologist who found the first lesion is no longer in practice anymore, so it makes things harder surrounding the elusive "small, nonspecific lesion" that no one else seems to find. I think I'm just in need of moral support right now from those that understand, because I'm feeling so defeated and have no idea what direction to take from here. ;{

    My daughter will soon receive results of a brain mri and lumbar puncture which are expected to confirm MS. If anything is good about that, it’s the timing. My husband plans to transfer to another branch of his company next year, his choice of location. Where’s the best place to be? We live in the Deep South, where the heat and humidity are bad for MS. Extreme cold is also not great. Where is the best region for mitigating symptoms? We especially are interested in states that allow medical marijuana. Any advice? We are trying to be proactive at a time when we are most frightened.

    Hello guys First of all thank you in advance for your support. This is my first time posting in this forum so apologies if it’s not the right landing page. A close family member was diagnosed with MS late last year end of November. He had a couple of active lesions at his first mri and a few tests were done leading up to the diagnosis.. . Since this was the first Attack, his doc advised he could “monitor” the situation for about 2 months and before going on drug modifying drugs. This was a sigh of relief to us and he went on a wahls level one diet (no gluten, diary, ton of veggies and fruits) to help his symptoms and disease progression. Everything was going so well without any relapses. All of a sudden he felt slight symptoms over The Weeknd and his newest mri shows one new lesion. We don’t know how to respond to it— he had been doing everything in his power and we didn’t expect to have new development in such a short time (less than 3 months) Is there any truth to all these articles and forums talking about people who have successfully reversed MS ? I don’t know if anything in his diet is causing it either. Sorry for he long post. Any help is really appreciated.

    I'm a 29 year old man. I've been dealing with strange symptoms for 5 years now. In that time I've gotten 2 MRI's, one in the first year when I started feeling strange flush sensations on my face, it came back clear with "2 unremarkable white spots". I passed the neurologists strength/reflex tests no problem though with some hyper-reflexivity in my legs. Fast forward to 2-3 years later, symptoms continue to persist and mostly consist of: - Both feet are cold almost constantly. Elevating them seems to help, but I'd say this is the most persistent single symptom. - There's a sort of flush/light burn sensation in my lower cheeks/jaw. Sometimes it's worse than others. Usually it's dull and just annoying. I'm always "aware of my face". - Slight tension/pressure in my brow. - Persistent pressure in the back of my head/neck - Jumpy/Anxious - Frequent urination - Memory is pretty bad. I was never good at names/faces but since all this ramped up everything has been pretty cloudy. That's the bulk of what I deal with on a daily basis. My energy levels have been pretty good/consistent. I lift weights and I haven't noticed any issues with my strength... There's just these persistent symptoms that never seem to let up. Oh and I almost forgot, I had a 2nd MRI about a year ago (year 4 into all this) and that came back the same as the first. 2 Unremarkable white spots. Passed all the reflex tests with similar slight hyper-reflexivity. No red flags. Saw a neurosurgeon last week about the possibility of Chiari Malformation (to explain the head pressure), he looked over the MRI, said no. To quote him "You're the most neurologically normal person I've seen all day." Ran all the reflex tests on me. Said he didn't know what was going on with me and offered to refer me to a neurologist. So I don't know everyone, I'm depressed about the symptoms. The cold feet in particular. My PC checked my feet and said "you could run a marathon if you want". But they always feel icy. When I'm in bed in the evening I point a space heater at them to combat it. Could this be some kind of hardcore generalized anxiety disorder I've spun into? Do I have MS with 2 clean MRI's 4 years apart? Wouldn't things get worse over the course of 5 years? I'm tired and sick of all this and I don't know where else to turn. Any thoughts would be greatly appreciated as I basically have a bunch of doctors (including neurologists/neurosurgeons) shrugging and chalking it up to anxiety. Help. Thank you, A Worried Guy

    Has anyone else experienced a severe burning sensation? Mine happens in my legs. It feels like I'm burning from the inside out. It comes on suddenly lasts about 5 minutes, it is from my butt down to my toes. It feels like my leg is in a campfire. Unfortunately when this happens my other leg has severe pain and cramps up and freezes like a statue. I have been lucky enough that the 5 or 6 times it has happened I have something to lean on or someone to help me as I can[t use either leg. The burning is extremely painful and very draining.

    Share your experience with possible MS diagnosis. Get the conversation started.

    Share your experience with fatigue. Get the conversation started.

    Posted yesterday that doctor won’t give results until appointment. My issue is the results are in, noted in the patient portal. Called and explained that I am nervous and would appreciate the results. I was put on hold and after a long time I was told doc said the results are not in. I mentioned that the portal states they are final and assistant told me that’s what she was told to say, she was sorry. So it’s bad news? The numbness and pain is awful now. Does MS numbness do this, come and go in intensity? It’s been 6 months and getting worse everyday

    I had a MRI of my spine today. Waiting for results. Doc office told me doc will not give results over phone I have to wait for office visit. That’s a week away. At MRI technician saw I was nervous. Told me that my brain MRI was normal so the spine is most likely normal. He said the results will be ready in a few hours. So very frustrating that doc won’t call. Meanwhile. The numbness in my feet and hands is awful. No other symptoms. I’m so worried.

    Hello, Six months ago I started experiencing numbness in my heal. Doc diagnosed me with joggers foot. In November I woke up with numb feet, hands (both sides). I went to the hospital and I was sent home, it was not a stroke. Followed up with a neurologist and a brain MRI was done which was clear. Every lab test you can think of was normal. Doc said it is not neurological. Currently the numbness comes and goes. One foot is always numb. I saw another neurologist who ordered a spine MRI. She says she does not think it is MS because brain was clear and the fact that the numbness has lasted so long and comes and goes. I have no other issues. I did have a MRI of the spine 1.5 years ago for back pain which was clear. I am so scared. Which the doc said could add to the numbness. My neurologist also said the physical exam was normal. Could this be MS. If not what else?

    Quick background, August 2017 I went numb from the waist to my toes... Lesion found... Termed it transvers myelitis... Tested positive oligoclonal bands in spinal fluid. Fast forward to July 2018 legs gave way completely and I fell. I've had to use the walker intermittently during this time. Fast forward to this week I'm having a very difficult time speaking it's like I'm choking on my words, going on five days. MRI from November 2018 are normal except for lesion on spine. My doctors are at Mt Sinai and they said I need therapy that there's no medical connection to these symptoms and that I'm manifesting it. They even suggested anti anxiety pills. I don't feel like I'm at all psychosomatic and these symptoms are very real to me. Yet these are supposed to be the best doctors. I don't know what to do.

    Hello everyone, I hurt my back a few weeks ago and had an mri done. My feet and hands went numb. I’ve always had tingling in my hands and feet for a long time but when I hurt my back it got really bad. Also started to feel it in my face. Anyway, I just got the results back and the doctor showed me a small what ghost mark on my spinal cord. It’s in the center of my back and it’s just one. She ordered a brain mri to see if I have ms. She said that the spot doesn’t mean that I have ms. She said it could be a stress response to something. I find it hard to believe that it can be anything other than something bad. Could this be nothing? Again find that hard to belief! Thanks everyone, just going through a rough patch in life at the moment and now this! Won’t have the brain mri till next week and this is really got me stressed out!

    Hi, I'm Denise and i'm 29 years old. I was diagnosed last month and will be starting my Tysabri treatments soon. I've been reading from people already on Tysabri how the week leading to your upcoming treatment tends to be rough and then once the infusion is done things begin to get better again. At the moment my symptoms are minimal (left hand feels stiff and tingles like it fell asleep, occasional headaches, some tiredness) but overall I feel fairly normal! Did anyone start Tysabri while feeling fairly normal notice that now after being on Tysabri you're experiencing pre-infusion fatigue? For the most part I feel normal and I'm afraid starting this medicine would cause me to experience worse symptoms pre-next treatments, if that makes any sense. Thank you for reading.

    Has anyone experienced painful restless legs with muscle spasms?

    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 love my Bidet but I just found the perfect invention to my MS bladder issues. I'm not going to get into my story about how I was introduced to this fairly new product at a recent Kaiser visit--However I'm going to share this product with you. You can purchase it now. Look it up on Google. It's like wearing a long pad!! The PUREWICK Female External Catheter is a solution for bed and wheelchair bound women. The soft, flexible, external disposable "wick" is attached to a continuous low pressure pump, wicks urine away into a designated collection canister. The "wick" is tucked between the labia and gluteus muscles, but external to the body, keeping you dry... minimizing bedsores, UTI, bedding/clothing changing and NO pain!!!
Viewing 21 topics - 1 through 20 (of 440 total)