Thank you Laura, great video! I know one thing MSers hate to hear is when they are told they look great when inside we are in pain etc but.... you look really well! Well done on the video keep up the great work.
@lauraironstalksms
4 жыл бұрын
Hi Richard, thank you for taking the time to leave a comment and yes this has to be one of the most frustrating things we hear, ''but you look ok'' it's difficult to convey how we feel by how we 'appear' to look to others. I hope to raise more awareness with these videos. Thanks for watching, keep well
8 ай бұрын
Damn I have these symptoms but i don't know if I got this far as diagnosis. Also do MS patients have vitamin d deficiency issues despite always consuming foods with vitamin d
@melissachildress2927
3 жыл бұрын
I really enjoyed your video. I have had a Lot of symptoms of MS bladder issues migraine headaches were I drop things out of my hands my eyes I see double. And my right leg goes numb.. I've not had my MRI yet. I've listened to a Lot of videos or utube videos. Will you respond back to me please. I would really appreciate it. Also have thinking issues. To were I can't think of were I put things. I look to hear back from you. Melissa Childress.
@lauraironstalksms
2 жыл бұрын
Hi, I hope you are doing well
@davesutton881
3 жыл бұрын
Interesting video, thanks. I am worried I have MS. For nearly 2 years, I have had fatigue, a band of chest pain & pressure, mind fog and an incredible thirst/bladder weakness. I also have a constant vitamin d deficiency. I have also had tremors for a very long time. My GP has taken me through gastro investigation mostly based on my chest pains, but that's all clear. Now waiting on cardiology, because of my bradycardia. But hearing of MS symptoms I am worried more of my symptoms match MS.
@lauraironstalksms
3 жыл бұрын
Hi Dave, I'm very sorry for missing your message here. How did all your investigations go and did you get to see anyone in regards to a diagnosis? I hope that you are feeling better it would be good to hear from you. Laura
@davesutton4753
3 жыл бұрын
@@lauraironstalksms Thanks for coming back to me :) Not loads has changed, but they keep pushing down the cardiology route so will wait to hear back on that.
@lauraironstalksms
3 жыл бұрын
Hi Dave, I guess as well things are probably a little slower during covid in terms of getting seen etc. I hope that they find a solution for you and get to the bottom of it. Good luck with everything 🤞
@petro3441
3 жыл бұрын
I battle to swollow and with times my mouth goes dead like i was with a dentist. I have experienced what you are talking about.was always wondering what that was.it mostly when i cant sleep and then it feel like i am huge and my bed and husband and room is very very tiny...weird.
@missysmakeuproomanmoreanmo5720
3 жыл бұрын
I have been diagnosed with pots but I question the doctors diagnosis ive had ms system but the doctor said no well I feel strongly that I have ms I woke up two days in a roll I woke to novicaine numb first day I rubbed my leg got better mornin 2 my whole leg had 0 feeling I stood up an I feel didn't feel it at all thats why I stood up I was questioning weather it was in my head but no please help should I see someone else I seriously was in shock
@missysmakeuproomanmoreanmo5720
3 жыл бұрын
I need help what do u think
@lauraironstalksms
3 жыл бұрын
I think you should seek another opinion from a specialist
@pinap1602
3 жыл бұрын
Does anyone get tingling in there legs or leg when brushing there hair or when they sneeze?
@lauraironstalksms
3 жыл бұрын
Hey, I've not experienced tingling from the things you mentioned. I have tingling mostly all the time in my legs /feet and it gets worse when I have walked or exercised.
@rzlna
4 жыл бұрын
I have MS. I’ve had AIW symptoms on and off for years. It is usually my hands and arms but I’ve also had it extend beyond that. I usually feel (I don’t see it, it is purely a feeling) that my hands have become flat, almost 2D, but I’ve also had the clown hands feeling too. It doesn’t usually last very long and sometimes I get headaches with it or afterwards.
@lauraironstalksms
4 жыл бұрын
Hi Roslynn, it's interesting to hear others with this. I honestly thought I was going crazy trying to explain it to people! You explained it so well and it is exactly how it feels, thanks so much for sharing. I too get the headaches afterwards, I sometimes wonder if its all linked to MS as I understand its a neurological condition. I wonder if there's a treatment for this though? My MS team are aware of this but never mention treatment plans.
@lurycharles-pierre1223
3 жыл бұрын
Thank you Laura I wondered the same questions I've been diagnosed for about maybe 3 years now and I've had relapse after relapse after relapse
@lauraironstalksms
3 жыл бұрын
When I was diagnosed back in 2008, I was the same I had relapse after relapse after relapse. I thought I'd never get better and wondered where my MS was going as it never seemed to let up. It was only after I started my trial on campath that I became better. Are you on any treatment?
@jennyfromtheotherblock
3 жыл бұрын
I have been experiencing optic neuritis for about a year now and thought it was just my horrible eye sight getting worse. I saw an optometrist last week for new glasses and she stopped the exam and did some exercises and did an imaging test and told me to get into a neurologist ASAP because of the severity of it pointing towards MS. After speaking with my GP on the phone, they agreed that it is a likely diagnosis and I'm suppose to go in for an exam for a referral to a neurologist this coming week. I told my family what they both said and my mother (who's one of those people who ALWAYS has to have it worse than everyone else) literally laughed at me and said that all I was doing was copycatting her symptoms of neuropathy (but most of the things I've experienced have nothing to do with neuropathy and have so much in common with what people with formal diagnosis of ms experience). Thank you for making this video, it makes me feel like I'm not crazy or overreacting to what could be my life from here on out.
@lauraironstalksms
3 жыл бұрын
Hi Jenny, I hope you get good news when you speak to a neurologist about your eyes. It's interesting how they would Suggest it's a likely diagnosis of MS without doing some other tests e.g a MRI or lumbar puncture but maybe every one does things a bit differently. If it does turn out to be MS then you know there's so many options now for treatments and also a huge support network of people who want to help. Good luck with it all, keep us posted 🧡
@yvonneagase881
3 жыл бұрын
thank you Laura for this video, Mind if I ask if your vertigo/dizziness just went away?
@lauraironstalksms
3 жыл бұрын
Hi Yvonne, don't mind you asking at all. No unfortunately not and it's the thing that I have the continued problem with. A lot of tests and visits with many specialist neurologists and Otorhinolaryngologists (ent) finally gave me a solution to me long standing problem. I still have it but no where near to the same level. I am on life long medication for it now. I'm going to do a video sharing all the things that helped me through this time and all the excercises etc that I was given whilst on my trial which might hopefully help others going through this awful thing.
@lurycharles-pierre1223
3 жыл бұрын
I need help sometime when I put on my clothes sometime I can't lift my legs I'm just praying for help I hope the universe could help me help everybody with MS cuz this is a difficult time people don't understand what it is to have a mess because they don't know about the deceased but it's the most difficult discomfort everyday like I was losing my balance unable to walk I was unable to shut my eyes and stand without being dizzy or feel like I'm falling I hope there's a drug that comes out that it was wife with all the way because people don't understand how difficult it is in a lot of people never heard of a mess when you explain to them they don't know what it is
@lauraironstalksms
3 жыл бұрын
Yes a lot of people don't know what MS is which is why I think it's important to bring awareness of the disease. Sorry to hear you are struggling and having a difficult time. If you ever want to talk please reach out to me here, I'd like to think that I'm here to listen. I hope too that one day we have a drug to cure MS
@johna9543
3 жыл бұрын
That Alice in wonderland syndrome is a new term to me hearing it. Makes sense of the stuff I’ve experienced over the years. I used to DJ at techno parties in my younger days. My left hand freaked me out many times, you need to use and see both hands using turntables. I had to quit using turntables because it always started triggering it. Still does happen on rare occasion. I keep my hand in my pocket most times because, well how do you tell anybody without seeming mad. Sit on my hand still as force of habit. Looking at my hand seemed distorting and unsettling. That’s not my hand followed by a buzzing and something emotional that knocked me for six. I had to stop DJing 1 night because the music just sounded weird after. Techno music became my realm of weird reality at times but was really just using a mixer & turntables. How do u say music sounds different to anybody without seeming like a nutter too because that happened but probably just direct consequence of Alice in wonderland syndrome Sounds daft but once upon a time I had self diagnosed myself with - alien hand syndrome after reading some books at the library in my early 20s. Things started being weird after the turn of the millennium, there seemed to be some wacky source materials just reaching a surfaced. Later I realised, because that was a rare medical anomaly, that those people the professors studied, were probably experiencing ms (which was an unknown) There was things said in those studies about hands just doing stuff against your will. That’s not a symptom I experienced personally but the rest had some ‘truths’, but maybe when those studies were carried out by psychology professors, people had entered a madness phase with whatever drugs they had been given to ‘help’ the Alice in wonderland syndrome. Interesting stuff, doesn’t make you feel so mad knowing it’s not such a rare anomaly in current times (well it is kind of lol). Just a symptom of ms that’s rarely spoken about because well, it’s unexplainable. My last job I was a jewellery specialist. When I looked at items of jewellery it would trigger it. Jewellery is something I’m finished with doing ever again because of that sensation. If something freaks me like that, I need to never do it again. Keyboards on computers trigger it too, but mostly unavoidable in modern times. It’s obviously when your having to concentrate using you hands that triggers it in me Always laugh and think of alien hand syndrome 😂 was just my own coping mechanism but I wouldn’t dare to tell people that or they might think I actually need help. Alien hand syndrome is something you should read up on for lols and insight. Those people studied were just really confused and probably didn’t help with a weird mis-diagnosis. I can’t offer any books because I forget, never really took note of the names or authors because was so long ago, but there’s plenty source material out there these days. It’s sad to know people were diagnosed with a ‘madness’ when they had a real neurological condition. I actually believe MS is not just a modern thing, just mis diagnosed in past time through bias of a doctor/professors personal studies
@lauraironstalksms
3 жыл бұрын
Alien hand syndrome 😂👽 this sounds so much more apt that Alice in wonderland syndrome! I might just use that. Like when I'm fatigued I will tell my family that Lassie is here. Lasditude is a term used for extreme fatigue with MS, so I just use Lassie and people know. I might use Alien hand from now on, easier to say than AIWS! And maybe easier for people to understand?!
@johna9543
3 жыл бұрын
@@lauraironstalksms 😂 I like the Alice in wonderland term, il use that myself when explaining, covers a wider spectrum Alien hand syndrome is a good ice breaker when trying to explain things to a medical professional 👽 it’s a very real thing & allegedly there’s still folk around the globe who suffer from it, but it’s so absurd I can never forget about it. It’s manifested to people who do stuff like impromptu groping (which I think is bs) or collecto mania, like picking up stuff that u shouldn’t in recent times. old psychology studies were more like AIWS. It’s actually pretty rare meeting anybody who has had that sensation, so really hard to explain. I’ve used it a lot in jest because it’s so absurd that people tend to check it out and be shocked it’s a real thing 🤣 I think alot of it is just lazy mis diagnosis or self diagnosis from wacky media outlets. It’s allegedly more prevailing in the left hand & my troubles are with the left hand so it fits 🤣 I used to watch too much sci-fi alien stuff😂
@lauraironstalksms
3 жыл бұрын
Snap! My left hand too - wonder if there's any connection in that? If I have a relapse now it mostly affects my left side.
@johna9543
3 жыл бұрын
@@lauraironstalksms I’ve never met any actual fellow MSers who have hand issues. The local MS revive centre I met a fair few people, but was always their legs with issue. You can tell, a lot with walking aids or leg splints. I really couldn’t connect proper with them over MS because never had those problems with legs myself. All the exercises and stuff they did in classes was mostly to strengthen the lower body. Guys were all in an older age group to me too between 50-60. They told me it was all younger folk who came & went so maybe the revive centres issue with not being able to cater as well for upper body issues. Maybe more younger folks with upper body problems. But always been told I’m not alone in my problems by professionals. Got me thinking about that too but they never tell you more specific details (which I totally understand on patient confidentiality thing) I would speculate the problems with upper body are more prevalent in younger folks below age 40-45. Maybe something people are studying as to why. Think in Scotland there’s a really high rate of people with MS but only studies I’ve found is people connecting dots with lack of vitamin D. Makes sense with lack of sunshine. These are all things I’ve just noticed personally in the quest for ‘answers’
@jayneitz7787
4 жыл бұрын
I also have this symptom of Alice in wonderland. Very distorted when I’m looking at the floor it looks closer than it actually is very frustrating only happens for seconds at a time never been diagnosed with this symptom but now I know how to explain it thank you. I also experience the ms hug which is horrible
@lauraironstalksms
4 жыл бұрын
Hi Jay, I don't think I've met anyone who's had AIW syndrome, but I'm sorry to hear that you experience this because it's not pleasant!. Have you told anyone about this in the medical profession? I believe from what I've read it could be caused by migraine related problems, I take topiramate to manage my aura headaches, and I think it 'manages how many episodes I have but like you said its frustrating. The MS hug is unpleasant, the only thing I know which helped me was steroids. Are you on any treatment for your MS?
@jayneitz7787
4 жыл бұрын
I have not told anyone about this. Kind of just deal with it very short spells of it. They just started me on gabapentin for the pain and tightness I am having in my legs feels I am wearing tight pants all the time. I just got diagnosed three months ago it has been hell.
@lauraironstalksms
4 жыл бұрын
So you are very new to MS. It can be, and probably is a very difficult time for you, and trust me, just because I have had MS for 12 years it doesn't mean that I too don't get worried or deal with bad stuff. I think it just means that the longer you have MS, the easier it gets to read your body and you will find this with time too. They have just prescribed Gabapentin for me to deal with some neuropathic pain I have, BUT I have found some ways to start reducing pain naturally (which I'm going to try and do a video on later) it's tough, but please try to remain positive, there are people who want to help and I'm definitely one of those. I'm here to listen and support if you need it 🙏
@getbrite4516
2 жыл бұрын
has anyone noticed that most people since covid have been experiencing new symptoms of many things since the past two years more people are complaining of things that they never delt with before I don't think it's related to ms with most of us I believe it has something to to with covid type in Lady that caught covid have Symptoms of weakness and numbness on KZitem. She was healthy until she caught it now she's experiencing some of the same symptoms most of us have
@amyclarke6916
4 жыл бұрын
I am in the process of being diagnosed. My feet have been numb and my legs have been so weak for the last five weeks. I'm praying it all just dissappears soon as its felt like a lifetime.
@lauraironstalksms
4 жыл бұрын
Hi Amy, I feel for you right now as it can be a scary thing to go through, but just know you're not alone. There's always people who want to be here to support and connect with you. It always seems like a lifetime, but I promise you it does get easier. It may not seem like it right now but it does. My feet and legs started exactly like yours, please keep us posted in how you are doing, thinking of you 🙏
@emanuelporic
3 жыл бұрын
Emotional stress - I lost all of my energy in minutes.
@lauraironstalksms
3 жыл бұрын
Emanuel - I'm totally with you on this. Emotional stress continues to be a big factor in my MS and plays a significant role in how I feel with it. Unfortunately sometimes we can't control it. Sorry to hear about your energy levels, I hope you have found away to deal with it
@kendregab7328
Жыл бұрын
What can you do to help tame symptoms as you await for your neurologist appointment? I have a consultation on May 18 but I am experiencing a lot of symptoms with this flare. I had another one that was reported in 2016 of some symptoms of muscle weakness, joint pain, muscle twitching and a few others. Now I've been experiencing those symptoms plus more since March like numbness in my face, near sighted ( need my glasses more than usual) joint pain, warm feeling in my face and joints, tingling in my arms, face, legs, pins and needles in spine and throughout body, prickling feeling on my skin after a warm shower everywhere the water touched, spine and neck pain, problems walking( not everyday but some days better than other) and electric shock feeling in my waist, groin area and neck when I bend it. The other day I got numb from the waist down while eating dinner. I stood up and was still numb while I was walking for a good half hour looking to see if my body was moving but couldn't feel anything. I was really close to going to the E.R. but slowly gained back feeling throughout the night. It was scary. Now I'm having eye sensitivity and I can feel my eyes as they move with some eye pain. Can anyone can give me some advice to help tame these symptoms/ give me any advice till I can be seen on May 18 I'd greatly appreciate it 🙏
@lauraironstalksms
Жыл бұрын
Hello, steroids are normally what is given to help calm down a flare as it reduces the inflammation in the body. Of course if this isn't an option, unfortunately you'll need to let your body go through the motions naturally. The best thing you can do is get lots of rest, plenty of sleep, de-stress, do some gentle exercise if you are able to, eat well with nutritious foods and make sure you stay hydrated. This may not resolve your symptoms but it will sure help put your body on the road to a better recovery.
@rashel_fitchett
Жыл бұрын
I have had Alice in Wonderland syndrome as a child. Sometimes I thought my tongue had swollen. Or every else’s head had grown very large and their bodies very tiny. Now I have intractable migraine and have a brain mri in a couple weeks. MY daughter had AWS as well.
@bonita2311
5 ай бұрын
What was it?
@Brickbritain
3 жыл бұрын
I'm currently going through the process of trying to figure out whats wrong with me. I saw a neurologist in November and had an MRI for head and full spine on the 23rd December. I get my results this Friday... I have had a number of symptoms that worry me; I've had internal tremors or buzzing since the 3rd December that seem to be all over thats so difficult to describe to anyone. My wife says she can't even feel anything. I've got muscle twitching all over in random parts of my body and I also have change of sensation on my face and hand and occasionally my arm. I also have a stiff neck and middle back discomfort that comes and goes. I just want to find out what it is as it getting so frustrating and although its not getting any worse, its not getting any better
@lauraironstalksms
3 жыл бұрын
Hi Adam, often it's the not knowing which is the most difficult part. I understand the internal tremors and buzzing, I always thought other people could feel it but now I know it's just me! The buzzing sensation is so hard to explain to anyone that I just don't bother anymore! Hopefully (fingers crossed) the MRI that you had will hold some answers. Here's hoping that you get some answers to the problems that you've been facing. Please let us know how you get on 🤞
@aneetavedula7624
Жыл бұрын
How are you now?
@tonyaquilina7709
2 жыл бұрын
I have terrible pain in my shoulder going down my arm. Around my neck and side of my head. I loos my balance when standing still. My long vision goes blurry.at times. Short while ago I found myself almost wetting myself. What do you think
@lauraironstalksms
2 жыл бұрын
Hi Tony, maybe you should seek medical advice if you haven't already
@scores718
Жыл бұрын
Anyone over 70 yo? I would like to chat.
@tianaoglivie5244
4 жыл бұрын
Hello Laura. I really enjoyed your video and thank you for posting and speaking on the different symptoms. I have had MS since 2003 and have been on Avonex, Tysabri, Tecfidera and now Gilenya which is now recently I believe is not working as well. I now have constant numbness on one side, pain in shoulders, hot flashes, optic neuritis, painful spasms. Some of which my doc isn’t ms related. It’s just nice to hear that there are others with different types of symptoms or the same and you’re not alone. I do exercise regularly and adhere to a healthy diet which I’m hoping will help. Again thank you so much.
@lauraironstalksms
4 жыл бұрын
Hi Tiana, thank you for your lovely message. I'm sorry to hear that the treatments that you have tried and are trying are not working for you, do you or your doctors / MS team have another solution or option? Is Lemtrada an option that's been spoken about for you? The numbness I would say is a MS related problem, that is how mine started, but because of the stress of MS and the physiological impact it has on our body, we can cause our body to have other problems too. Avoiding stress isn't easy but it's a huge factor in helping our MS. I wonder if they will suggest this as an option for you, it really changed everything for me. I'm sending you thoughts and wishes and hope things improve 🧡 please keep me posted on how you are getting on
@tianaoglivie5244
4 жыл бұрын
Thanks Laura for responding so quickly. I think for right now I will let my doctor know again of my symptoms and see if I can get an additional mri to check for new lesions. If not then I will get another doctor. I do appreciate your recommendations and I definitely keep you informed. Thank you again.
@lauraironstalksms
4 жыл бұрын
Sounds like a good plan. If at all possible, try to get the MRI scan as close as possible to the time you had or are having your relapse, that way there's a better chance of the lesions or new activity being picked up. Rose lavender essential oil is very good for massage with pain as it has anti inflammatory properties 🧡
@melx6957
3 жыл бұрын
Thank you for sharing your story and symptoms, it is really informative and articulately presented. I am probably a complete hypochondriac but I'm convinced I have something wrong with me. It started off within the last few years and I just have not felt right. It started with fatigue and regular migraines, then a complete loss of consciousness seizure (I know seizures are not a symptom of MS buy with my other symptoms I'm not sure. After the seizure my headaches have mostly gone away but the last few weeks I've been having tremmors, all over my body. I also get muscle twitching, mainly in my eyelids and leg muscles but they can present anywhere in my body. Tingling in the tip of my tongue occasionally and feelings of grit under my eyelids. Like you, a couple of years ago, I had a b12 deficiency and lost a lot of hair. Sorry for the long post, maybe I am just losing my mind 😮😊
@lauraironstalksms
3 жыл бұрын
Hi Lisa, don't apologise for your long post, the more information the better. Sorry to hear you've been having a hard time for the last few years, you talk about siezures and actually its not uncommon for them to be linked to MS. About 2 to 5 % of people with MS are thought to have active siezures, why is not exactly understood. I have a lot of headaches, normal and aura headaches and after them I honestly feel like I've experienced a siezure because of what it takes out of my body. The things you are saying that you're experiencing are definitely something to get checked out, you haven't mentioned in your post whether this is something you have done or spoken to a Dr about? Strangely enough I've just done a video on the eyes because that's how my MS started off, not with optic neuritis or blurry vision like most people, but with grittyness and a whole host of other issues. 21 years later and I'm finally able to control this, maybe you might find some information that's useful in that when I've posted it? Don't feel like a hypochondriac, you have some very valid complaints there which are causing you problems, I would try and get seen to see if you can eliminate some of your worries. Also if you can get a diagnosis then at least you know what you are working with and how to control things. If you need any further information or advice please just ask 🧡
@melx6957
3 жыл бұрын
@@lauraironstalksms thank you for taking the time to reply to me Laura. I have an appointment for an MRI in a couple of days, due to the seizure, my first seizure as far as I'm aware and I'm in my late 30's so it was quite out of the blue. The gritty eye I've had a few times now, I think theres been a couple of months between episodes of that. The tremors are really new to me aswell, and only started in the last few weeks really. It's so frustrating not having the energy that I used to have , you can most probably relate to that yourself. Anyway, thanks again for your video, it's the best I've found yet, that explains the symptoms. ❤
@melx6957
3 жыл бұрын
@@lauraironstalksms I forgot to say that I can relate to your headaches aswell, they leave you feeling completely drained dont they and I'm glad your managing with your symptoms now. It's strange that my headaches have disappeared since the seizure as I was getting them every other day before hand.
@lauraironstalksms
3 жыл бұрын
@@melx6957 you're welcome. Great news about the upcoming MRI, hopefully that will give you a better idea of what it may be. Fingers crossed for you. It must be scary for you having the siezures, I've not had one, but can only imagine what you must be going through. Are you in the UK? If so for your gritty eyes, try using something called 'the eye doctor hot and cold compress' link www.boots.com/the-eye-doctor-hot-eye-compress-10201014 if you're not in the UK I'm sure you can buy something very similar online. They are brilliant at soothing gritty dry eyes. As for the lack of energy /fatigue, it's something I've probably still not come to terms with even 12 years later, but you do get to know your body and understand your limits so you work around that and actually once you accept and adapt, things become a lot easier 😊 Good luck with the MRI. Let me know how it goes 🙏
@melx6957
3 жыл бұрын
@@lauraironstalksms thank you Laura, yes I hope it gives me some clarity one way or the other and I will definitely try that for my eyes 👍, I hope you continue to do well and have less symptoms with your MS. Thanks you.
@Chroniclesmajesty78
3 жыл бұрын
Yes, i feel my hands become big, big big big aand more big sometime. I have MS
@lauraironstalksms
3 жыл бұрын
Have you got Alice in wonderland syndrome?
@10xyy
3 жыл бұрын
I‘ve been to a neurologist back in June because I‘ve been experienceing tingling in my feet since May. He only did the balance and walking tests and then measured my nerves on my feet I guess? Don’t know what that is called but the results were good. He just said ‚ah it‘s probably just your anxiety or whatever‘ and didn‘t do anything further. I also had shooting pain in my legs but Magnesium fixed that for me. Now I am sitting here with my feet tingling especially the soles and searching for MS symptoms. Do you think that the tingling would go on for 6 months if I really had MS? I am on the edge of a breakdown because I tried many vitamins and excercises but it won‘t go away.
@lauraironstalksms
3 жыл бұрын
Hi Dilara, I'm sorry to hear that you are experiencing these symptoms of tingling, but especially as it's making you feel the way it is. On the positive side, the balance, walking and nerve tests were good, but the not so good thing is that you've kind of been left with no answer to this. Tingling is generally caused by a nerve problem of some kind, but it could relate to so many things. You said you've tried vitamins and exercise but you didn't say what vitamins you have taken or what exercises you have done? Also do you take any other medication? Vitamins E, B1, B6, B12, and niacin are essential for healthy nerve function, and B6 is good too but too much B6 can cause tingling in the hand and feet. Are the symptoms there all the time or on and off? Yes it's possible that tingling can last that long, my tingling is constant but that is because I've had damage to my nerves and that damage is now irreversible so I'm left with a tingling sensation. Have they suggested an MRI scan for you? What are the next steps or are there none?
@10xyy
3 жыл бұрын
@@lauraironstalksms thank you so much for your fast answer! I can‘t think of anything anymore besides the tingling. It drives ne crazy :( The tingling is constantly there, everyday since the mid of May. I just don’t feel it when I walk or when I am active in general, but when I sit or lay down, I start to feel it immediately. I have tried Vitamin B1 for 2-3 months, made the tingling slightly better but since it didn‘t went away, I stopped taking it since last week. I am also taking B12 drops but not consistantly because it breaks me out. The other ones I haven‘t tried yet, but I will! Thank you for your recommendations! My next appointment with my Neurologist is in the end of January, I have to wait until then. I wanted to ask my GP for a MRI, I hope that she approves of that. I also went to a orthopedist who said that I have a flatfoot and also said that my weight is not evenly spread on my feet, it mainly lies on my toes and heels. The middle part isn’t used at all and the muscles there are very hard. He said that the tingling could be because of the muscles being constantly tense. I am also very sorry to hear that you still have the tingling. I wish that they would find something to make the damage irreversible!
@lauraironstalksms
3 жыл бұрын
@@10xyy you're welcome, I hate to think of people struggling and just wish I could help. You're doing the right things with the vitamins, sometimes it's a trial and error thing, something works well and something doesn't. It's good that you have been taking them for a couple of months as vitamins take about 3 months to get into our system but can sometimes take a bit longer. There woukd be no harm in trying the others and they are safe to take altogether. if your muscles are very hard in the middle of your foot, you could try gently massaging that area to stimulate the muscle and nerves and get the blood flow around your foot, also massage your lower legs too and that might help. Massage everyday for a month and see if it has an effect. If you can get some lavender essential oil or rosemary essential oil to mix in a base oil for the massage, this is very good for muscle pain and inflammation (I know you don't have pain but it's good to try everything and eliminate one by one what might be a root cause of a problem) good luck for your appointment in January, it seems ages off! Is there any opportunity to get a private MRI done on healthcare insurance?
@10xyy
3 жыл бұрын
@@lauraironstalksms I wish I could help, too. So bad that nobody can do anything :( thank you so much for your advises! I will do them, hopefully they will help. Yes the appointment is so far away, idk how I will keep calm until then. I have to ask my doctor in regards of the MRI, I don’t have any idea because I haven‘t done one yet. Ugh I never imagined that I would be scared of having MS, a year ago I didn’t even really know what MS is and now we‘re here🙄 but I think if I would really have it, at least I would have an answer to all of my questions and I could do something to treat or stop it from getting worse!
@lauraironstalksms
3 жыл бұрын
I know it sounds easy to say, but try to stay calm until you know what you are dealing with. It might not even be MS and could be something so simple. I think the best thing to do is wait and get the MRI done, you can get them done privately, depending on where you are living. I'm in Wales, and had to have a private MRI scan done for my arm and it cost around £230.00. But I was desperate! And couldn't wait months to have it done on the NHS, this may or may not be an option for people. If it does turn out to be MS, you have a huge community of people around you who will be here to help support you through it. Be strong 💪
@nyahmanismommy
4 жыл бұрын
I get mentally fatigued. I hate texting or repeating myself.. reading makes me tired also.
@lauraironstalksms
4 жыл бұрын
I'm with you on that, not a fan of having to repeat myself. Listening to music is good for my fatigue
@raypurchase801
3 жыл бұрын
I hate repeating myself repeating myself repeating myself repeating... Sorry, I couldn't resist. I'm still waiting for a formal diagnosis, so I'm not being cruel. It's gallows humour.
@lauraironstalksms
3 жыл бұрын
Everyone likes a bit of humour 👍
@DieToFleshNotSpirit
3 жыл бұрын
I have been feeling numbness on my left leg when laying down for the past months and recently my right arm has been going numb. Are these signs of MS?
@lauraironstalksms
3 жыл бұрын
Numbness can be a symptom of MS, but it can also be a symptom of many other things too. I'd suggest that you go get it checked out to put your mind at rest
@DieToFleshNotSpirit
3 жыл бұрын
@@lauraironstalksms Thank you 👍🏻
@delta101able
4 жыл бұрын
Love your video, really informative.
@lauraironstalksms
4 жыл бұрын
Thank you very much 😊
@feeya2487
4 жыл бұрын
What about speaking alot slower than other people with stuttering when tired?
@lauraironstalksms
4 жыл бұрын
Hi, people have asked me if I've been drunk because they had said that my speech was slurred. I suppose this does happen a lot when I'm fatigued, when I'm really fatigued I don't have the energy to talk. Is this something you get?
@feeya2487
4 жыл бұрын
@@lauraironstalksms Hi Laura! Hope you are well. I can't remember exactly when my voice started to get slightly deeper and slower in speed, I've had compliments that my voice sounds cool some have said it is abit slow when I'm on the telephone talking. At times I may even sound like I'm drunk in the later hours of the day! Also been getting neck pains for so long now, Cervical MRI (Neck Only) results showed dehydrated discs in my neck...I didn't have a brain scan at all..this was my first MRI, no idea what the results even mean!! Kind regards, Feeya
@lauraironstalksms
4 жыл бұрын
@@feeya2487 Hi Feeya I'm well thanks and hope you are too. I've never heard of dehydrated discs, did you go back to the radiologist that did your scans? Or do you have a neurologist that you can talk the results through with? It's so important to understand them and it's your right to know what they mean. I wonder because you also said yours happens towards the evening whether it's worse when people are fatigued? It's almost like words are a string of slurry! I hope you get some answers to those scans, keep me posted 🤗
@abehl
4 жыл бұрын
Thank you Laura for sharing and I have just subscribed your channel. I too have MS for over 20 years now and have just started my channel yesterday called Abhs & MS (Stepping out with Multiple Sclerosis). I have not tried Lemtrada treatment but have lived for over 5 years on Extavia and now am on Tecfidera for about 2 years. Its been good and have been episode free for now 7 years. It's just the constant chronic fatigue that is there and a slight foot drop.
@lauraironstalksms
4 жыл бұрын
Hi Abhishek, and welcome to my channel it's great to have you here. I would be really interested to hear about your story so will check your channel out, thank you for sharing your journey with MS because its very important to get the awareness out there about this condition and how it affects people differently and each help each other to share experiences with how we manage it. Yes the fatigue is a very bad side of MS because its the invisible symptom and one which many people don't or can't understand. Let's find ways together to manage this. How do you manage with drop leg? Do you have aids that help support you?
@abehl
4 жыл бұрын
Thanks Laura, Yes, I have been wearing an orthotics foot drop support brace (Flexor) and it certainly has helped with a lot of movements. Other than that I don't use a walking aid. Also, exercise on my ankle and legs really help. Best is to do some yoga positions which does a world of good. I am no expert in yoga but it surely makes a slow and gradual help with balance and strength. :-)
@lauraironstalksms
4 жыл бұрын
@@abehl Hey again, can I ask how far you can walk unaided? Also what type of MS do you have? 20 years with MS is a long time and I'm sure you have a vast amount of support and advice you can give people 👍 I've had a little look for your channel, but unfortunately I can't find it
@abehl
4 жыл бұрын
Thanks, Laura - Yes walking I can do say about 500 meters and then I am fatigued badly and have to rest. Also Yes, have had a lot of stuff in my early days and there was no help with KZitem videos and especially people giving tips etc. Some were there but not as many as now. Regarding my channel, if you click on my profile you should go to my page (I think) - just have one video there to say hello and have scheduled a lot of videos I plan to put up in the coming days and weeks for people to see and start the conversation rolling. Also still learning the art of editing and making videos - enjoying this learning sphere.
@abehl
4 жыл бұрын
Also sorry I have the Relapsing-Remitting form of MS :-)
@deanperlman2474
2 жыл бұрын
Diagnosed about 2 years ago with relapsing remitting MS but had been suffering for many years prior to that. Just watching this video and so curious you brought up the Alice in wonderland syndrome because over a decade ago when I was trying to get to the bottom of why I was feeling so crummy I came across a description of that and knew I had experienced it since childhood. Actually it was very prevalent in childhood but not so much as I got older. Thank you so much for your videos and all of the information 🙏
@lauraironstalksms
2 жыл бұрын
Hi Dean, I hope that you are keeping well with your MS. I also had no idea what Alice in wonderland syndrome was, but when I was explaining this to my MS nurse and I said to her 'I know I sound crazy!' she said no and gave it a name. I too had it when I was little, mostly with things like patterns on my bed sheet triggering it if they were really busy patterns. Even today it happens, but like you not as often. I do wonder if that was the start of my MS? Look after yourself and keep well. Laura
@andrewgold441
2 жыл бұрын
What medication are you on, at beginning and now
@lauraironstalksms
2 жыл бұрын
Hi Andrew, I was on a trial for campath (also known as alemtuzumab) since 2009. I had two infusions two years apart and then nothing since. That is the only treatment I have had for my MS, I have been on no medication since 2010.
@lillyaswad5028
Жыл бұрын
@@lauraironstalksms have you had no new activity since?
@lauraironstalksms
Жыл бұрын
As far as my MRI results suggest, I have had no new activity and no new lesions - however I did have what we thought was a relapse back in 2019 but the scans still showed nothing. If this is right, I haven't had any new activity since 2009.
@lillyaswad5028
Жыл бұрын
@@lauraironstalksms so symptoms still show regardless of brain activity? I understand previous damage cant be 100% healed but shouldn't symptoms stop if there's no new lesions
@lillyaswad5028
Жыл бұрын
@@lauraironstalksms have you felt better in general? any pain or fatigue?
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