I suffer from claustrophobia too, so the GP gives me some diazepam to take prior to MRIs
Hi im new to the form and although i haven’t been properly diagnosed with ms .my symptoms are pins and needles down right side of my face fingers hands and feet muscle cramp and spasms in legs and arms ; sore eyes incompetent and feel very weak and tierd Also cant stand wearing a top i feel if its smothering me hope to get some information on here cheers all or have a mri scan 20th this month on my spine and lower lumber
How strange, I haven’t heard of the feeling of tops smothering you being related to MS before, but I also feel this big time! I am also in the process of investigations/diagnosis with my first neurology appt Monday. I have already had my MRI though, with lesions showing, so perhaps a little further down the line. I had to say something though as I have the same (rather strange to me) symptom
The neurologist I saw said my Mri would show a 40 percent chance of Ms activity based on my medical history. I’ve declined to have the mri at the moment which may sound odd to people but that’s the decision I’ve made which I will revisit in a few months. Love to all
Ok so I have just been told I have MS. Scared,devastated. Dont know what to do.
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Hi Rdiack, everyones MS is different and can be treated to slow down. Keep a notebook of your symptoms as they come and go and any questions to ask your nurse. There is a lot of help and support out there - you are not alone. Take care and keep in touch
I was diagnosed with MS in August this year, now for me it gave closure to all my ailments and allowed me to refocus. That being said yes I agree it is very daunting, I’ve had to accept there are things I can no longer do, and the constant learning new problems and hurdles that we all come up against. For me it means I have to learn a new way of life. I was a carpenter fitting kitchens, and my MS prevents me doing that role. But I have knowledge and experience, and a desire to fight on. Firstly we have to come to accept our MS, then we need to find a way financially to move forward. So firstly I’d say start a Pip claim this can take upto 16 weeks (look online for assistance as to how to answer the questions). Don’t lie but be truthful to yourself, secondly there’s council tax you are entitled to a 25% reduction if living with someone or 50% if living alone, thirdly there’s work, now we each must decide if we can carry on, in the same positions, but don’t sign a new contract for a new position until you have read the disability act, the disability equality act, disability discrimination and the disability human rights act. There is a lot of reading however we find we have more armour than our MS vulnerability, for me personally I wrote how my MS affects me, so I could present it to me line manager and HR. If you can’t work then there is universal tax credits… Fourthly there’s groups like here. We are not alone. If I can help I will as will many others on here. Remember each day we learn more and we cope and move forward each of us unique as our conditions. Hope this helps and if not make your questions more specific.
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Hi I am new to the group and just last couple of months have been diagnosed. My first symptoms was i lost the sight in my left eye with pain around it. I went to opticians who sent me to opthalmology. They diagnosed optic neuritis and suggested it may be early sign of ms but doubtful as it was first flare. They offered mri which i took to just be sure. I was then suddenly referred to neurology without any results before hand and started getting worried. My neurologist was lovely tho and explained i have leisons on the top of my spine and in my brain which was typical of mcdonalda scoring for ms. So i went for a spinal tap and it was horrible. They struggled to get the sample and went into my spine quite a few times. I still suffer with some lumbar pain. Now i am waitjng on results to come back and then decide what to do next. This has been a scary enough year without all that going on. But i thankfully have an amazingly supportive mum and husband. I keep my diagnosis under wraps for now. Work are aware incase but not anyone else. How do you all cope?
Hi, coping is something we all just have to do. If we accept our condition, and focus on what we can do, and not what we have lost, We Can Move Forward. There are a lot of people with problems in the world, that can be worse than ours. I remember that I can help others, I put in the effort and time. I remember I am me, and my condition does not define me, I can do what I can, when I can, and know my limitations. I was diagnosed in August 2020, its a big change, life re direction, a new path, journey. I’ve had lots of hurdles and many more to come, so I try to be as positive as possible, and do things that I want. I look at new things to try, and be the best that I can be. so remember how great you are. the partner, friend and even stranger that you are. who lives and breathes, manages your condition and still is a fantastic human being, defined by your own character and choices.
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Smith91
Sorry to hear about the endless series of tests you having to go through which I can reassure you is the norm. I was diagnosed at 57 with RRMS but it also took almost 18 months before I got an affirmative diagnosis. On one occasion I was reassured by my GP I did not have MS but when I went to a neurologist a month later was told quite bluntly my MRIs showed lesions typical of MS; I also have a trailing left foot and ongoing back pain which led to this final prognosis. I was assured MRI was suffice to conifrm my diagnosis and was never offered a spinal tap which I am led to believe can indeed be painful.
Going forward, if your diagnosis of MS is confirmed dont allow it to get you down. MS is not the life sentence it used to be and new drug treatments are improving day on day. My partner keeps me positive and when the chips are down she just reassures me to look at the much more disabling conditions other folk are dealing with.
Good luck in the future.
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Hi, I’ve had a vision problem since last year. I went to optician and they said only a very slight change in prescription and didn’t really need new lenses. I was frustrated but accepted it. On reflection the test was done super quick and it felt like she just wanted me out so she could finish. I’m not sure how she could see or notice anything whizzing through the test. So I trundled on. Now we are here and I have an appointment booked for a week and a half time. I hadn’t bothered too much about my symptoms til I started to have more incidents in the last few months. I’m wondering what your vision problem was, can you describe it? I often feel like I can’t see out the centre of my eye. It’s hard to explain, I can see but it’s like when you have a bit hair in front of your eye or fluff on your lashes but it’s not a solid shape. Bit like when a migraine starts but no flashing or moving lights it’s just stationary. I sometimes feel like there is darkness round the periphery too. When o look at people I feel like I’m looking round whatever is in the middle and feel like I must look strange to them. For a good few years I’ve had numbness in my hands on and off, my dad and sister had carpal tunnel so could be that. Recently I had painful thumb/wrist joints, went away often a few days. I get painful elbows, never at same time and mostly at night and it wakes me up. I also get a sore hip and knee, mostly when I’m resting and sleeping. Then nothing for a period. I’m a dog Walker so put a lot of my aches and pains down to that. Probably is. I’ve had so many little niggles for the last 5 odd months and had felt fine for the months pervious. I don’t know, I just have this gut feeling there is something going on. Any advice for optician visit and I hope you don’t mind me jumping on your message. I feel lost and scared and like a hypochondriac. I have and under active thyroid but it’s well under control nowadays. I was put on iron supplement recently with no explanation as to why my iron level was low. X
Hi Smith91,
My journey started with pins and needles which lead to a loss of feeling in my hands and feet. My diagnosis took close to a year and unfortunately my lumbar puncture was performed by a less experienced nurse. Which after several attempts lead to me having a migraine and lower back pain for about 2 weeks.
Following this difficult start I was diagnosed and was given a few options for treatment. I decided to choose a DMT in pill form which was Tecfidera as it allowed me to live my normal daily life and fitted around other commitments. I have been on Tecfidera for close to 5 years and I haven’t had any new lesions since I started.
The loss of feeling has never subsided, but thankfully the treatment has stopped it from getting worse.
The treatment did have some initial side effects, some gastrointestinal issues and I still have periods when I suffer from hot flushes which can be draining. However, in exchange for my condition not deteriorating it is well worth it.
After at least 6 years of living with the condition, I can still play with my children, I am able to carry out my work to the same standard and have been able to continue to develop my career, I can still stay fit and healthy, it has probably encouraged me to live a slightly healthier life as well, which is a positive that can be taken from this and although I can still have some symptoms such as fatigue, I am able to live a fulfilled life.
My partner is very supportive and I am glad to hear that you have a support structure in place too, as it is very important to allow you to overcome some of the adversities that the condition can throw at you. But please stay positive, as there is so much that can be done to help you. If you are diagnosed then take your time to consider your treatment and make sure that you lean on your support network to help you through those more difficult days.
I hope this helps, but if you have any questions this forum can be very helpful
Take care
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I felt bad. The body was swollen, the pain was so terrible, I thought that my neck, legs and arms would soon fall off. It`s very scary. It was difficult for me to get out of bed and go to my work. My doctor did not know what to advise and sent me to a neurologist. It is good that they clarified my diagnosis and started at least some treatment. I ordered medicine here Canada Pharmacy. Over time, it became easier for me, and now I feel better. If you notice similar symptoms, go to the hospital immediately. I wish everyone good health, take care of yourself.
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Lyme disease and MS can give exactly the same symptomps. have been recently diagnosed with MS but I would like to eliminate lyme disease possibility. Could you confirm what tests for LD have you done please? My neurologist told me that some of the MS medication can worsen the symptoms if you have Lyme Disease.
Hi, i was diagnosed in May with SPMS and i told work straight away and they have been brilliant - first thing my boss asked was what do i need from him and they are always supportiveof me - dont be afraid to tell people x
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hello all!
my name is James(but you can call me james or that_dude i don’t mind which!) and this is my first post on the forum.
in 2004 i was diagnosed with diabetes,they thought i was type2 but in less than a year i was put on insulin (type 1) and have been that way
since 2004, in the beginning of my diabetic journey i made a lot off mistakes some of them nearly killed me i was full DKA once
and half DKA a 2nd time dka= Diabetic ketoacidosis my first dka i had a blood sugar reading of 58.7 mmol, dka, can only be treated
in icu they also had to punch a big brass stud through to my bladder to see how much urine i was passing and that did hurt! as time went on
i got more knowledge and skilled at treating the condition and i managed to get called “well controlled” so i setted down for the long haul of
keeping it under control (my trade was a fully coded welder and fabricator) then in 2019 i noticed that my eye sight started to get worse and
i had lost a lot of strength and i was having very bad problems with my bladder&bowels, at the time i thought it was diabetic issues that i
was experiencing but then things really started to unwind at a very fast pace so i went to my doctors and told them about all the problems i
was having and the doctor had to insert her finger into my back passage and tell me to squeeze her finger i also told her that i was numb
from the base of my ribs to the tips of my toes and she looked at me and picked up the phone and called the hospital and demanded a
appointment more or less now she did start talking medical terms on the phone that i had never heard before mri this and mri that and i
started to sweat bad she never told me what she suspected but after a mri of my brain, spine and a lumber puncher i was diagnosed with
severe ms on the 22nd of November 2019 i was told it is rrms but what i know/think now its severe progressive ms and i will never have a job
again due to my condition, also my good diabetic control is gone due to having 2 auto immune conditions that hate each other!, off late i have had
7 hypos all at night when i am asleep so it is a forgone conclusion that this will kill me…its not a case of “if” but “when”. the ms portion of me has focused on my left leg and arm i have also fallen down the stairs 2x from top to bottom the 2nd time it happened i couldn’t get up for over half a hour due to the bad fall and no strength(i live on my own) i couldn’t get to my mobile or the house phone till i could get up, when i did manage to get to my feet all i could do was sit on my couch for a hour till i could get some composure back and then deal with the cuts, bumps and pain. my current exercise limit is 15 mins on my feet without a shopping trolly(thats on a good day!) after that time fatigue sets in and i am on the highway to hell my left leg drags along the ground and i stumble and trip till i can get to my car, i also don’t think i will be driving for much longer if i am still driving in 3 months then that will be a result! but if and when i cant drive that will mean i am house bound and cant go shopping to get the food i need and for a insulin dependent diabetic…well that will be the end but i wont die of starvation as the hypo will do it. i also have a very, very bad stammer as well so talking is a massive issue as well for me and i have also have lost a lot of my cognitive ability as well, a example is i might be on my computer and i check my blood sugars and the alarm go’s of as i am hypo so i have to act and have food so i make my way to the kitchen and i then cant remember why i came down stairs so i sit down hoping i remember why i came down stairs for but i cant remember so i go back up stairs and i see my blood monitor and click! i remember why i went down stairs for(food) so i have to go back down to have food all the while though im still hypo and have gone up and down the stairs with ms+the hypo! not good. i hope there are type 1 diabetics that also have ms on the ms society forum so we can chat about common issues.
thanks for reading my first post
regards
james
I have many symptoms of MS but I can trace so many back to other problems (breast cancer treatment) many are decades old and I just have lived with them. NOw Im 50 and I seem to have to many problems for my age. Mainly severe leg and hip aching and cramping. Foot and calf cramps that persist 15 minutes and Im screaming. Ive had lots of bursitis and feet injections. I drop things often, Im tripping some lately. I attrubute a lot of this to a a possible back problem. Ive seen lots of people for issues. I started Googling leg cramping and came upon MS. Ive been reading and have lots of the symptoms but none of the prominent ones like vision disturbances and fatigue. Has anyone presented with leg pain and tightness that is quiet painful?
Hi StWilliams. It sounds like you haven’t had a formal diagnosis. If this is the case then I’d suggest voicing your concerns to your GP (create a list of your experiences that show why you think it is a possibility) and ask if it would be possible to eliminate MS as a potential cause by having an MRI scan. Doctors sometimes forget that even just one scan can eliminate many surgery visits, concerns, and hours of specialist’s time, simply by eliminating neurological issues, e.g. MS, at the outset. If I’d been able to have an MRI scan in 1986 it might have saved years of doctor visits and really inappropriate and fruitless medications, and a lot of personal distress.
Cramp is one of the things that I experience, but I’ve also found that I can avoid it (often) by quickly changing my feet and leg position before it fully sets in. It’s excruciating if I don’t act quickly!
Dropping things is very common in MS as signals to muscles can suddenly diminish, saturate, or involuntary twitch, but from your description I’m not sure that MS would be the first thing that I’d think of with your symptoms. Obviously something is going on though, and eliminating some of the potential causes by having a full MoT, i.e. blood work and an MRI, might avoid many medical cul-de-sacs. It may also put your mind at rest because not knowing is in many ways far worse and harder to deal with, feeling something is wrong and not knowing what or why. I remember the relief of finally being diagnosed with MS (which may sound peculiar), but all that inner tension for so many years with no answers was a massive psychological weight. I felt so relieved to finally “know”. I hope that doctors one day learn not to underestimate how damaging lack of answers and absence of deep investigation is for their patients (sadly, that day is not yet, but perhaps we’re getting there slowly).
I hope my response makes at least a little sense. I’m experiencing “brain fog” today so am not at my best… whatever that is! lol
Good luck!
Dave
Thank you for a lovely, positive message. I am awaiting my neurologist results but know I have inflammation and lesions on my MRI so waiting for more of what kind of ms and how severe. Its very hard to be positive at the moment but your message is reassuring. Thank you.
Hello, I haven’t actually been diagnosed with MS but I do think I may have it and I’m looking for some advice, due to Covid and general ignorance from my GPs office I haven’t had an appointment yet so it would be great to speak to someone who can put my mind at ease.
I am constantly unwell, I’ve always been unlucky that way but this is so different. I do have reduced kidney function in my right kidney, and have had all my life but this feels so different.
I am exhausted most of the time, when I was younger I was really athletic, in loads of sports clubs and loved to be outdoors, this stopped when I was around 16/17 when I started to feel unwell a lot and become tired or sore really quickly. This was always put down to my kidneys again which I accepted but recently I’ve started to think there’s something underlying. Anyway, I’d like to go over some of the symptoms I’ve been having and hope for someone to help me out on this!
I have tingling mostly in my hands and arms, sometimes it feels like some of my fingers aren’t attached to my hands and they don’t feel like my own
I feel really tired and run down most days, with little energy no matter how much I sleep, or even what I eat.
I’m vomiting most days of the week, I’ve considered a food intolerance but it’s literally anything from water/juice to actual meals and I don’t seem to have any stomach pain so this has been ruled out.
I have a lot of lower back pain ( which I’ve put down to my kidneys ) but It often feels like it’s spreading and the pain is different, it’s a harsh sort of tightening pain? As if my back is being tied into a knot.
im peeing way more than usual, again most likely my kidneys it’s becoming more and more frequent at night.
my vision is seeming blurry at times, I feel as though I cant focus my eyes, This isn’t a constant thing but happens for brief periods most days.
I feel like even my thinking is foggy, like I’m having problems remembering what I was going to say, or do. I know this is pretty normal for everyone but it feels so strange and I get so irritated about it.
I’m also finding I’m walking like a toddler at times, I look so clumsy my balance is completely off and I’m usually stumbling or tripping up a few times a day.
I’m not sure if any of this is actually related, or if I’m just overthinking and there’s a simple fix but it would be great to hear back from someone jsut to put my mind at ease until I speak to a specialist.
I should also add, family members of mine have, and have had MS too.