i had optic neuritis in 2000, I saw a neurologist who said he could see no signs of any symptoms, I was diagnosed last week, 17 1/2 years later, looking back I have had symptoms but they have gone away so I denied that they were MS, now I have what my friends have affectionately nicknamed floppy leg when I have walked for about 15 minutes, this isn’t going away so I knew I needed to do something about it. The problem I have now is, I think, more psychological as every twinge pain funny feeling I think oh is this it, is this the MS whereas before diagnosis I would just ignored it. Appointment with consultant in about 3 weeks to hopefully discuss findings and options.
Hi, I am new here and am yet to be diagnosed, my story began about 3 month ago, I suffered with a severe urine/kidney infection, I went to my gp and I was successfully treated with strong antibiotics, At the same time I started with numbness on the side of my left breast which moved to my right side and gradually the numbness spread all the way down my right side, it then went onto spread across my lower abdomen saddle area and left leg. I also then developed tight band feeling around my upper torso, just below my breast all the way round, At the same time I had bladder and bowel problems, had no feeling as to when I needed to go, my right big toe dragged on the floor for a couple of days when walking but that cleared up. When ever I got in the bath Wowzer that was weird numbness became very prominent and muscles would become stiff. While all this was going on I also had burning pain in my arms. After 10 weeks the numbness started to fade and was replaced with vibration in my legs and lower arms and hands I feel like I have been in a boxing ring for the past 3 month. I forgot too mention the fatigue blimey never known fatigue like it, anyway my gp referred me to neuro, and he sent me for MRI of head and spine was in the scanner for 90 mins I am now awaiting the results and it is the not knowing that is worse than anything what do you guys think, does it sound like anything you have all suffered with, like to mention I have only had brief episodes of blurred vision lasting 10-20 seconds, I also have had occasions when my legs have felt wet when they are not very strange sensation. Any input would be greatly appreciated Tia. x
I too am experiencing the same thing. Waking at night and parts of my body feeling like rubber. That’s the only way I can describe it. And I rub or shake to get the normal feeling back. This is the scariest feeling ever. It happens to my arms and legs. I find myself afraid to go back to sleep. Have you determined what is causing this feeling?
You have just tpld my story. First fibro, then positive Lyme and now pointing to MS. Lumbar Puncture yesterday. I think Lyme and MS may have a link. I just want to know what is wrong now after a seven year battle and bad mobility.
Bells palsy was where mine started! I was in Glasgow at a Morrissey concert, I was absolutely shattered and couldn’t wait to get back to the hotel to sleep. I just didn’t feel right and my face felt strange, like I couldn’t laugh properly. I kept biting the inside of my mouth. My face was collapsing. My partner at the time said I was imagining it. The next morning at breakfast he looked at me and said, ‘yer face has collapsed.’
Visit to gp resulted in a bells palsy diagnosis. In a few weeks my face was more or less back to normal but the fatigue was immense. Also my hearing was not good in my right ear. Next port of call was ENT. The specialist concluded bells palsy wouldn’t affect my hearing so an mri took place. That revealed t2 lesions. Hello neurology!
And here I am, 2 years down the road. During this time I had an L.P. which revealed CIS. By this time I was experiencing a burning/tingling sensation in my hands when using a hair dryer, also Intermittent bouts of fatigue. Then a couple of months ago I had a strange weakness in my left forearm. It’s still there.
I’ve had a 3rd mri now, it has showed some older lesions have slightly improved but there are a couple of new ones. Next Tuesday I see my neurologist. So far I am not on medication but I think that will be discussed next week. I’m feeling optimistic, I don’t know if I am foolish to feel optimistic or not!
I think back and try and make sense of strange occurrences over the years. For example, I occasionally get a piece of food stuck in my osophaegus, I’ve had this happen for years. It gets stuck then goes into spasm. I can usually dislodge it with warm water and forcing myself to vomit, this is not ideal when it happens when enjoying a meal out! I’ve missed whole evenings in the toilet hanging over a basin whilst my meal goes to waste. Very embarrassing. I had an endoscopy maybe 15 years ago, they came back and said I had a tiny hiatus hernia. I’ve always put the choking down to that…but could it have been ms? Itchy skin is another issue. For years and years I’ve had itchy skin, even antihistamines don’t always ease it.
I have so many questions to ask next Tuesday. Has anyone else experienced choking?
Another thing that keeps bouncing back to my mind, when you are in the 'watch and wait part - pre official diagnosis - is your car insurance affected? At what stage must you inform the DVLA and if/when you do what kind of impact does it have on your policy? All these questions! Holiday insurance too, I suppose?
Hi Labradorlove When you get a firm diagnosis of MS you are supposed to inform the DVLA who will put your car licence on a 3 year (I think) renewal cycle. I have not gotten round to doing so yet myself, after being diagnosed about 6 months ago since I just got a new licence a year ago. I notified my car insurance but it did not affect my policy. As for travel insurance it may result in a higher premium but some companies can easily accommodate. Hope this is of help. Regards
Hi all. I am pretty new this whole ms stuff. I am not yet diagnosed however the neuro suggested its the most likely cause. Started with a numb mouth. Could feel any food in my mouth. Numbness and tingling spread to rest of face and eventually down left side of body. Arm and leg. So far its been mostly an annoyance not having any feeling in left side. I have an MRI scheduled next month. Cant wait til its over with. Have had symptomsfor about 3 months now. Age 33-male. Oh…fatigue too
Update… I was diagnosed with rrms on Tuesday, so my waiting is over! I will be starting on avonex very soon, then once that beds in my plan is to continue with work.
I feel ok about the situation. The fact I’m on 40mg fluoxetine daily maybe helps! However, I’m finding when I’m telling friends and family that their reactions are as if someone has died! I find myself comforting them in a way. Very strange. As a result I’m wondering if I shouldn’t be so open about it all.
It’s a funny old world. This is a path I never planned to go down, but here we go…!
Hi, Can I ask if the depression was a symptom long before you suspected MS?. I am awaiting an MRI at present. On antidepressants at present and have been for some time. It’s quite bad at present. I’ve had a course of steroids recently also. My balance and Co ordination can be awful at times. Painful feet and pins and needles care other symptoms. You must be happy to know now though?
How are things now? I am awaiting an mri. The freezing feet is something I can relate to alot. I also have Obstructive Sleep Apnea, depression and other neurological symptoms such as poor balance, occasional speech problems, head fog, and pins and needles.
Hi all. Well I got my MRI results today it sayin my brain is NORMAL that’s a fist lol. Then it’s sayin I got a old (incidental thoracolumbar syrinx) So is they a good chance that I ant go MS??? I don’t know what do you think anyone
Freeman86 Interesting results. Did you have a contrasting MRI where they scan and then inject a dye and scan again? The brain I assume will show lesions in almost everyone but it is how active they are is important and that is what the contrasting dye will confirm. When I was having tests they also mentioned a syrinx but eventually they tied it down to RRMS. I have been on medication and high doses of Vitamin D and at my last appointment with my neuro consultant she reported my MRIs now looked a lot better, with lesions essentially inactive, and thus there may be some reverse of my condition. Not sure if it is the DMT medication or Vitamin D. Hope you get some assurance one way or the other soon. Regards
Bracknagh hi. No they didn’t give me the dye. And they ant looking into any further so went to see the Doctor they put on (nortriptyline) to see if it’s help. If that Dow work he will referred me bk to the hospital. Don’t know why nuffin come up on the mri. In February it’s bin 12 month
Will bin out of work know for 1 mouth my system have calmed down but still they. Difficulty walking difficulty in swallowing tingling in the shoulder blade vertigo legs going heavy spasms deep Sensation pains in the legs and arms sudden urges to go to the toilet one side of your face going numb and I car hav a hot bath or shower. Sum days I fill on top of the world. Or most of the days I fill down where everything kicking off
I’m 25 and newly diagnosed with relapsing remitting Ms. I’ve accepted that I’ve got it, I’m just getting on with life now like normal. At the minute I’m free of any symptoms, it’s just always in the back of my mind thinking what will it be next, and how long will it be between relapses. My first symptom was a numb left hand side of my face around April of this year… that was more annoying than anything. After about 8 weeks my feeling was back to normal. I then had Optic neuritis in October which made my vision really blurry, I put up with it for about 3 weeks, but my eyes sight was getting gradually worse to the point where I wasn’t driving. I finally got some steroids from the neurologist, they took another 3 weeks for for vision to get back to normal… relieved is an understatement.
Right now I’m back to work as normal, and just waiting to go back and see another neurologist. As I’m sure you all know it’s just really frustrating. Even though I’ve accepted it, I’m still in a bit of a state of dis-believe. I’m just hoping I get a 20 year period of remission, I know that’s wishful thinking though.
Hi, I am new to this website as I am currently under-going investigation and waiting for an MRI scan to see if I have MS. I am 23 years old and my symptoms started with my legs, I was out with my boyfriend and suddenly was unable to lift my left leg as it felt too heavy, I was also experiencing lower stomachache which is an odd symptom that is not known have anything to do with MS. As the days progressed I started to get chronic pain down both of my legs along with a tingling sensation! It then started in my arms and also on one side of my face and the back of my head… at this point I was extremely worried and began to see my GP. However nothing about MS was even mentioned untill over a month of having these symptoms! I am now finding the fatigue the hardest thing to cope with as it is interfering with work, I’m also finding my train of thought is quickly broken as I could be in the middle of a sentence and forget what I was saying! The tingling sensation has also moved into my hands and feet which I was not experiencing at the very beginning, and as embarrassing as it is I’m also having the tingling/pins and needles sensation down there which is also not the best!
Like I said though, I have yet to be diagnosed but if anyone has been diagnosed with MS and is having my symptoms please let me know!
