Your first symptoms - looking back..

New diagnosis and before diagnosis
101

My first episode was in 2009. I had electric shocks in my left toes. Excruciating. It’s against the Geneva Convention to do this to someone else -constitutes torture. I had buzzing in a thigh and my right foot went cold and semi numb. I had the electric shocks in my face for half a day. I could see my skin being pulled around as it happened. Dr did full bloods and a Neurologist said he would find out what was wrong with me and Mri of head was done. Six weeks later his acolyte, half my age, told me there was nothing wrong with me and to see my GP about my symptoms.

Since then the foot is now my whole leg, when it happens. The electrocutions now happen to my wrists and left armpit into my breast once.

Last month I had a four day spasm of my lattisimus dorsi. Felt like a broken rib when I breathed. I’ve had them so I know. Very painful and restricting. Then the muscle between my shoulder blades went into spasm. I couldn’t lift my arms above shoulder height, it was so ruddy painful. Lasted a day.

I get random niggles, like a little beetle running around in a tiny circle on my skin. I get bits of me being tugged by spasming nerves. Twitches of my fingers and toes.

One symptom I had at the beginning was that when I was dozing it would feel as if I was buzzing. But it could be the bed. I had a hunt round on the net and found someone else this had happened to over the pond. She was lying on a beach at the time. Twelve years later she was dx with MS. She said it was an early symptom, didn’t get it since. Me too.

Two months ago my right shin disappeared. My body could not feel it or use it. It only lasted a few minutes and I’m very thankful because I needed a stick to walk with, I was at work in the supermarket where I work in the freezer department, it’s a dynamic job that involves a lot of lifting.

My symptoms are slowly getting to a point where they could affect my ability to work. Perhaps the NHS will take me a bit more seriously now. Can’t afford private. Two tier Health service? You bet.

102

Reading back further, I’ve had two accidental leakages of wee recently, and also sometimes I can’t find the right word for something so use a different one A LOT. The spawn have noticed.

I wonder …

103

Hi TJx5 Don’t be concerned about the fear of ranting on here on this forum as that is in part what it is all about; the telling of your story. I was diagnosed with RRMS about 2 years back and have had indifferent experiences of how my condition was and is now been managed through the NHS in the UK. There seems to be increased numbers now being diagnosed with MS in the UK. Mine started after a bad bout of back pain which unlike on other occasions I could never get rid of and I developed a resultant trailing of my left foot which seemed to spark medics into considering I had MS. In the past they would have probably just diagnosed this as being a gamie leg and prescribed at most pain relief. Had a battery of tests, several MRIs and consultations with Neuro consultants before I got an affirmative diagnosis of RRMS. Now on a DMD, a medication called Gabapentin for neuropain and high doses of Vitamin D. My Neuro consultant maintains I maybe showing some reversal of the condition in recent MRIs; I think debateable as some days I trail my foot more noticeably than at outset and now get more and more queries from observers as to what is problem with my foot. When I reply MS they look in astound as they expect me to be wheelchair bound. However I try to be as positive as possible and live life as full as I can. Problems with treatments of MS in UK seem to arise as a result of the lack of specific medical specialists to advise on and treat the condition. Neuro consultants deal with all types of pain-causing conditions and one candidly admitted to me that, since I am a scientist and well read, I may know as much about MS as them. Finally DMDs are expensive medications and consultants will not prescribe them until you have 2 or more clear relapses of the condition. Unfortunately by then most MS patients are frustrated and are most probably suffering from many other detrimental side effects or conditions. On a more positive note chin up; many are suffering more life-limiting conditions than MS. Regards

104

Hello. I a very new to this site. I am not even sure what I want to know as I am still reeling from a very recent diagnosis. I am 57, female. I truly thought at this point in life I was out of the woods for MS. My sister, who passed in 2011 (horrible house fire; her MS would not allow her to get out) had one of THE most aggressive forms I have ever seen. As you can imagine, this has always been my worst nightmare. Within 6 weeks I can no longer drive or work or walk unaided. I am beyond depressed (I was diagnosed clinically depressed years ago) . My husband has brain trauma and can no longer work. Now he has to take care of me. I don’t know what I’ m asking in this post.

1 Like
105

Hello, It doesn’t matter that you don’t know what you want. It is enough that you have come onto the Forum and told us that you have just been diagnosis with MS. That makes you one of us. Now you have found your new family let us know how you feel and you’ll find that there are people here who will know what you are going through, understand how you feel and are willing to listen. You aren’t on you own now. Anthony

106

Dear Anthony…thank you so much for responding to my post. (my first)! It does help knowing others are out there as confused as I. I so appreciate you taking the time out of your day. :slight_smile:

107

I really feel for you, a diagnosis of MS is such a rollercoaster. And you’ve already been through a tough time with the loss of your sister and your husband’s difficulties. The only advice I can offer is to give yourself time to adjust, and seek out support, as there’s a lot out there. You might find talking to a counsellor helps, and your GP could refer you. You’re not alone, there’s a lovely supportive community here, and we all know how isolated you can feel, and the fears/tears and frustrations can be overwhelming at times.

Sending big comforting hugs x

108

Dear Madpants…thank you so very much for the comforting words. You are so right about giving myself time; I am currently trying very hard to do this. One day at a time. A very popular, common phrase yet so applicable.

109

New to site. Forgive me if this is long but I need help.

I am 33 years old. started having mild chronic pain about 8 years ago. That progressively got worse over time. They diagnosed me with Fibromyalgia after I had all the pain points. I had anxiety and depression issues as well and started developing weakness in my hands.
I after about 4 years of this and no end in sight got sent to an MS specialist. They did an EKG, EEG, and nerve conduction test. Preliminary results showed damaged nerve caused by compression at the LF and S1 but not serious enough for surgery. But that did not explain the weakness in my hands.

They scheduled an MRI shortly after that came back clean no Lesions. Did not rule out MS though said a repeat should be done in a year or two. Fast forward a year another MRI and another clean MRI, this time they also do a Cervical Spine MRI no lesions, determined what we already knew about the disc compression and gave me no new answers.

Fast forward 3 years later and I have started getting MUCH worse. I had a fainting episode that mimicked a stroke one night when watching TV. Flush across face, vision distortion and dizziness. Since then its only gotten worse. I developed a cold wet left foot with pain. Of course its not actually wet, just feels as such. Its weak and also get bad cramps in it. Blood work has always been fine, minus a couple times when D or B12 was low. Supplements fixed that. BP is fine. Thought it could be a DT, so they did an ultrasound of leg, blood flow is fine.

The weakness in my legs has now spread to both legs, and feet. its constant, and my feet feel always cold and wet. My hands have started to get weaker, and feel like they have a rubber glove on it all the time. I have patches of tingling sensations on my face, numb lip, ear feeling cold and chest tightness in my upper back and chest.

Went back to Nuero recently where they diagnosed me with Functional Neurological Disorder or a fancy way of saying its all in your head but actually casues symptoms. I have also noticed that I am fumbling my words a lot more, talking, typing, or writing I say the wrong thing, mis spell things or otherwise say the wrong things. This is very odd as I am highly intelligent, and used to be a writer.

I have an MRI scheduled for this Friday and is it sad I hope they finally find out I have MS? This has been 8 years of hell and every doctor under the sun says I am crazy. My family has disowned me for not working and taking government assistance while I seek disability for not being able to work. Ultra conservatives… I am in the US in the Washington State area and am tired… sick and tired of being sick and tired.

My question to you all… did it take you THIS long… and THIS much frustration to get diagnosed? I have not had an LP yet… I am demanding one this time around. Does it sound to you that I have MS? I am tired of always being in pain, and having this weakness and cold, and rubber glove feelings. Plus the dizzy spells and fainting like feeling which are really just intense dizzy spells.

110

Hi there,

I am new to the site also.

I am waiting on an appointment for a neck and brain scan in connection with symptoms.

For the last 10 years I’ve had various problems, never linked them and always explained them away.

Leaking urine = having children

bad back = having children

Fatigue = having children

Foggy thinking = tired from having children

blurry vision = tired from having children- optician said my reacted at different times during an eye test couple o f years ago

Lol - I do love my children btw

Over Christmas things took a turn for the worst, my back pain was horrendous - couldn’t lift my leg to put socks on (although it wasn’t just with the pain) it was like my leg was stuck and couldn’t move up any further, every time I stood up or at down I had a tremor in my spine.

This last around 10 days but since I’ve been plagued with fatigue, tingling achy arms (mainly upper arm) but can radiate down to hands. Some mornings this can be in my legs, or random pins and needles in my feet. Prickly tingle in my lower back (part of it feels numb - i can feel the pressure when i press on it)

I also keep getting a strange hot feeling on the top of my head as if my head is under a hot lightbulb - but not hot to touch.

Feeling of moving - especially if stationary in the car (feel like i’m rolling backwards) Also, pain at the nape of my neck where it meets my head- like a headache just in that part

Bloods revealed nothing but low vit D which I’m now taking a supplement for and percentage monocytes was out of range (the moncyte count was normal just the percentage moncytes was high - whatever that means).

Doc tried me on amitriptyline which just made my fatigue even worse. I’ve never been a great sleeper and because I have constant trips to the bathroom i ended up feeling zombified.

I’ve had various physio therapy sessions for my back over the years - an MRI scan around 6 years ago revealed a micro fracture and several bulging discs. Physio never seemed to resolve anything. Had physio down below for my incontinence - it was so invasive and didn’t resolve anything either.

Just curious to know if anyone has had similar symptoms and been diagnosed - do they even sound like MS symptoms at all?

Thanks in advance :slight_smile:

111

Hi all bin long time seen my last post but dose anyone on ere get really bad (headaches) it’s like sum one put in a knife in ya head and it goes init my face but I don’t get any pain in my eyes. Had it’s for 3 weeks now non stop

112

hi

I went for mri last week my symptoms over the past 6 months have changed ,blurred vision ,cramps for weeks then finally foot drop and bladder is out of control and vitamin d level is down I take fultium 800 daily the foot drop is the annoying bit .

113

I have been having things go on that just didn’t feel right so I looked them up and MS popped up. And see my grandma, her sister and a few of my women cousins have had it. The symptoms include headaches, nausea, sometimes vomiting, confusion, blurred vision, mood swings like being depressed and crying all the time, fatigue and having to go to sleep when it gets bad. I also have back pain,and numbness and tingling, and sometimes it’s hard for me to walk. I’m scared and no one believes me.

114

hello havnt been diagnosed with me but I’m having wierd symptoms the past 4 months started with me getting flu like symptoms when I was getting better I got a twitch on my left tricep stayed for a week went away then after whole body started twitching…a week after that I was at the movies sitting for 2 hours when I got up my leg went numb fell asleep I shook it off but foot stayed with numbness and stayed in the ankle area shortly after that I had a numb feeling in shoulder that went from numb to an ache and then a burning sensation that stays for most of the day everyday then the hot sensation went into my right thigh comes and goes on the thigh so right side issues at this point but that numb feeling to ache and burning sensation is now on my left shoulder that one comes and goes…mybfeet will go from cold to hot mainly on my right side …also I have been waking up with numb hands mainly the pinky and ring finger nothing on left leg yet …and also my right bicep feels tight…my motor function is still there but does this sound like als I’m very concerned

115

Hi everyone, I was diagnosed with MS last Thursday by my GP following recommendations from the Dr who wrote my MRI report. I had the MRI because I’ve been experiencing visual problems for the last 3 weeks. I wasn’t able to see detail or people’s faces and black lines or outlines would appear to be flashing a bit like a camera flash. My vision was also quite dull. This was accompanied by eye pain and numbness in my face. The MRI Dr reported that I have an active lesion by my visual cortex and 3 or 4 other non active lesions. I was prescribed a 10 day course of steroids which have improved my symptoms even though they haven’t completely gone yet. So, we have been in shock for the past week and were looking forward to seeing the MS neurologist last night for more information. We met with him yesterday and he explained that despite these lesions, he was not able to give me a definitive diagnosis as the MRI was inconclusive because he doesn’t know the history of my old lesions. I did tell him of previous weird episodes, i.e. numbness in my finger for 2 weeks 2 months ago, shingles in leg with no rash - severe nerve pain. My GP had told me they were 99.9% sure. I am now to have another MRI in 3 months. So, we are obviously pleased but also confused. I just wondered if anyone else has had an experience like this? Is it normal for a neurologist to be so cautious when others were so sure? He says he can’t say I have got it but also that I haven’t. Feeling a bit strange about the whole episode to be honest. Any advice would be appreciated. Thank you Jo

116

Hi im new to the group and looking for some advice. Ive been told for 4yrs ive got cfs,and despite returning to my gp with futher symptoms we have continued with just treating my symptoms as and when they occur. Due to a vertabra collapse and a visit to A &E someone as finally said your Gp needs to refer you to a neurologist. I started with chronic fatigue 1,muscle spasams muscle loss, incontinence of both urine and feaces. My eyesight has become worse with double vision and black spots. Vertigo loke symptoms and need to concentrate on walking or any other task,my lastsymptom ile mention is unable to sY what i want to say. How do i get my gp to acknowledge this and do a referal.

117

4 the last 2 weeks I been getting a old symptom. But symptom is getting worser they am my (tremors) and muscle spasms in the back they talk me of my feet. Anyone 1 get this as will??

118

Hi any help would be greatly appreciated I have had various symptoms ref MS my doctor has referred me twice to a neurologist I have tremors and cramps, fuzzy thinking, extreme fatigue, dizzy spells and involuntary eye movements to name but a few but each time the specialist has said all I have is a essential tremor as my Mother has this. They have never examined me neither I am 46 I had Claudia equine syndrome in 2013 which caused nerve damage and at the time a Specialist said had I been diagnosed with MS I am at the end of my tether and don’t know what to do next Doe’s anyone have any suggestions many thanks Dazza

119

Has anyone had a problem opening their eyes in the morning not due to stickiness. Happened first in my right eye then a few days later in my left… GP didn’t know what it was .I’m undiagnosed and waiting to see a neurologist. Other symptoms are tremor vertigo, tinnitus, involuntary movement of limbs, muscle twitching and buzzing in feet legs and head.

1 Like
120

Hi I’m just recently new to the website, I was just recently diagnosed with MS, I’m 30 and up until a couple of months ago I was living life normally, I took a bad flu bug over the Christmas season and had really bad tension headaches over my head and neck until one morning I woke up with diplopia and tingling down my left arm. I was taken to hospital had an MRI and a lumber puncture where they found inflammation in my head and spine then the results from the lumber puncture came back positive, I was in limbo for a few weeks until I fell scraped my face trying to break my fall with my weaker arm. The consultant at the hospital told me there was slightly more inflammation in my second mri to my first and since then I’ve experienced numbness in my feet, legs up to my waist. Neurologist confirmed it is MS and wants to do another mri on my head and spine. I have no idea how severe the progression of my ms is yet. Just looking for any information no matter how small just to help get my head around it all. I feel this diagnosis has came on very quick as well as the symptoms and feeling worried about my independence. Many thanks, Cheryl