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Could you please tell me your initial symptoms...?

Hello, I have a question which I some of you lovely people could answer… What were your initial symptoms & how long before you were diagnosed with lesions on an MRI? I am asking because I have had symptoms some Nov 12. Bad dizziness (couldn’t work or drive for 2 months), muscle twitches mostly in legs & eyes, buzzing in left leg and foot, a fuzzy light headed feeling in my head & stiffness in my hands. I had noticed some symptoms on and off since may 12 but after nov 12 they have been constant. I had an MRI of brain & cervical spine in January 2013 & have been diagnosed with generalised anxiety disorder - something I find difficult to believe as really am not an anxious person…well I wasn’t until all this started. I have been referred for CBT which I am looking forward to! I have read that some people do have a clear MRI early on so am now wondering- maybe it was done too early. I just can’t shake off this niggly feeling in my head that this is MS & as its not getting better, it may be early signs if PPMS. Any thoughts welcome Thank you Ash x

My initial symptoms were extremely poor balance, my right foot dragging and after walking a short distance my right knee would not lock.

I had the symptoms for about 5 years before getting medical advice. An MRI scan showed scarring on my brain at the first time of asking.

I’ve found my initial list of symptoms that I gave to my GP when he referred me.

  1. Very poor balance

  2. Unable to walk up or downstairs without holding banister. Failing to do so makes me lose balance and possibly slip on the stairs.

  3. Unable to walk for 5 minutes without stopping for a break. My knee doesn’t lock on the right side and I get a pain at the top of my right leg. My temperature then rises and I get tired & slur my speech.

  4. Drag my right foot after walking a short distance

  5. Unable to take concentration off where I am walking. If I look around, I lose my balance.

  6. When leaving car, have to lift my right leg to the ground and struggle to stand up.

  7. Struggle to use words without having to think. For example, my brain doesn’t compute when saying numbers, like the time for example.

  8. Too many headaches

  9. Find writing difficult with a free arm. My hand gets tired and I am unable to write on a straight line.

  10. Have twice collapsed and lost use of my legs, having to crawl along the floor using my arms.

  11. I have trouble lifting slightly heavy objects.

  12. Have a tendency of dropping items.

  13. After riding a bicycle, my right leg suffers in the same way as it does after I have been walking for 5 minutes.

  14. Feel dizzy when standing still after a few minutes.

The thing is, everyone’s MS is so different. My initial symptom (six years before diagnosis) was a slightly odd gait - feet a long way from the centre line - and an inability to walk down stairs without holding the handrail. I went to my GP six years later, because my husband wanted me to because I had fallen over once. The GP found I had odd reflex reactions and I had an MRI. This showed enough lesions that I had an immediate diagnosis of MS. I think the neuro did say something about not being definite because sometimes people have lesions on an MRI but never see many effects from them.

I’m sure I’ve read on here of other people who have something like what you’re experiencing - lots of symptoms but nothing on their MRI. I think the lesions usually show up in the end, so keep having MRIs done. Some people get diagnosed by having a lumbar puncture but I don’t know what they look for in this.

Poor you for having all these horrible, horrible symptoms.

Hi Ash and welcome…

It’s a difficult one because there are so many other things that cause similar symptoms. Defiency in Vitamins B12 and D cause similar symptoms… has you GP done any blood tests? Both of those can be detected in the blood.

ME/Chronic Fatigue Syndrome also cause similar symptoms & is tricky to diagnose (dx).

Mine started about 10 years before dx. I had odd symptoms that would come and go. Pins and needles, fatigue, light-headed and occasional painful wrists.

I know that in November 05 I started to get a bit worried. My manager called me in for a talk and was worried about how many days I was taking off sick. I always had a feeling that I was coming down with flu. That tired, light-headed feeling. I would take one or two days off and would spend that time in bed feeling dreadful… but it didn’t turn into proper flu.

At the same time I noticed that I kept getting confused. I worked on databases and spreadsheets at work and would suddenly become completely confused so I didn’t know what I was doing.

Well in the end, in Jan 06, I got shingles over one side of my face and head. That really did stop me in my tracks. Couldn’t get my strength back and was really very ill. Cutting long story short… I was dx with ME/CFS in Autumn of 06 by an ME specialist who then sent me for a brain MRI. ‘Bright spots’ on that led to a lumbar puncture… and finally in April 08 I was dx with MS. A year or so later dx with PPMS.

I write this long post (sorry… very long!) to show what a long process this can be!

It is difficult when you have a clear MRI as really that’s the main thing they are looking at for a dx of MS. Right now I would say there could be other things causing your symptoms as it is still very early days. See how things go. If your GP hasn’t done blood tests, esp for Vitamins B12 & D, ask for them to be done.

I think you should also have a chat with your GP about anything else that might be causing the symptoms. Although CBT might help you deal with the symptoms it isn’t really doing anything about finding whatever is causing the symptoms.

Yes, a 2nd MRI will sometimes show lesions that did no show on the first, but I think you will need to leave it about a year before they will be willing to do another, and also to give time for lesions to show.

In meantime, keep open minded. Remember there are literally hundreds of conditions that can cause similar symptoms so concentrating your mind on MS at this point means that you or your GP might miss another condition that is causing the symptoms.

Good luck & hope you find some answers soon, and that this helps.

Pat x

Hi there. I had numbness in my left arm 7 years ago. I had MRI and LP done and both were clear. Peripheral neuropathy was diagnosed and was told it would go away. 4 years later I had a sort of attack numbness and leg weakness. Doc didnt send my for MRI cos my last one was clear. He just said it was a virus and it did clear up after a few weeks. Then a year or so after this I started to get right leg problems very similar to Mr Grumpy. Had another MRI which showed one cervical cord lesion. The LP was clear. A year after that I had another MRI and LP. LP was still clear and still only one lesion seen. I had radiation theraphy for hodgkins lymphoma in 1990 and one neuro thinks that has been the cause. A second neuro says it is not radiation but MS although he cant give me a diagnosis until more evidence is seen on MRI or the LP suddenly decides to be positive! Next time I go back I am going to ask for all the tests for LUPUS and sjogrens etc which can cause spinal lesions, which to be honest I should have had done years ago given that my results are always inconclusive.

Moyna x

Thank you to everyone who has responded. It really helps for people like me to see the journey others have had. What their MRI showed etc. Pat- I do have a vit d deficiency & have had high dose vit d for the last 3 months. I guess what I am realising is MS presents differently in everyone - whether it’s RRMS or PPMS. If i’m honest i struggling to deal with the crazy symptoms but grateful for the things I can still do. Thank again x

Hi, my own experiences may help, but as we all say, symptoms vary enormously from person to person.

In 1999 I began tripping up. My left leg felt so heavy and I was dragging it along. Then my left foot started tripping me up…I fell over fresh air.

Then there were arm spasms…really painful ones. Holding onto my bladder became increasingly difficult. Bowel accidents didnt opccur until a few years later.

My mobility worsened quickly and I needed a wheelchair part time within less than 2 years.

I saw several neuros who all suspected PPMS. I presented as a person with PPMS would.

I had 4 MRIs, 2 Lps, 2 EMGs, VEP and blood tests, all over 14 years. Nothing came back to prove MS.

Last year I was told I have Spastic Paraparesis/cause unknown.

The reason PPMS was finally discounted was because my upper body (apart from deafness in right ear) remains unaffected.

try not to lock your brain into thinking you do have PPMS. I was sure of it, but now have to accept it isnt.

SP has no cure or treatment.

Good luck.

luv Pollx

If the professionals say you haven’t got MS then you haven’t, and think yourself lucky you haven’t got it, like I have. You’d need a lumber puncture and evoked potentials test before to make a firm diagnosis, and a neurologist would make these tests if they thought the MRI was suspicious. As for the symptoms you’ll have to look them up online or get some of the MS leaflets.

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Thank you Poll & Kingwalk. sb70520- I am grateful for your thoughts. I wish I could accept the neurologists diagnosis of anxiety but something just doesn’t seem right. I have spoken to & read about people who were told it was psychological then it later turned out to MS & also read somewhere that some people with PPMS have a clear MRI early on. This is why it got me wondering. Thank you everyone again Best wishes

Hello and yep! pretty obvious by everyones posts that it effected us all soo differently?

I went to the doctors a year before my diagnosis with a weird patch on my upper thigh that was dead numb, they told me it was something else and it will go away.

Which it did and then my big right toe went competely numb, I thought it was due to forcing my feet into bad shoes one night! but it never went away.

Then abourt6 mths later started feeling really tired, cranky, lack of patience, couldnt find my words, tongue tied, confused, felt like my brain was completely full and that I could not learn another thing! I also had a patch of a palm size on my upper arm that went numb.

That numb patch had these annoying stabbing itchy pains that I had to punch! it then travelled down my arm turning my thumb completely numb, to the point I cut it well and didnt notice until the salad was covered in blood!

I also was experiencing massive bowel and bladder changes, and having to go at least 6-7 times a night.

So off to my GP, who did full blood tests, CT scans which all came back clear.

SO he sent me off to a Neurologists, who booked me in for a MRI, this MRI was forecasted 6 weeks from date off first visit.

During that time I noticed while removing my apron at work electric shock like sensation down my back, which progressed into if I tilted my head it did it everytime and began making me feel very light headed.

I then began to get attacks on my left side, that came on like a contraction, every nerve in my whole left side would seize, making my fingers and toes curl and the left side of my face screw up! It lasted about 10-15 seconds and I had to breathe it out no different to a contraction to ease the sensation.

What went from having 1-2 of these a day, became 6-10, I raced to my GP who then fast tracked my MRI and brought it forward the last three weeks. I then two days later had my MRI. That was a Wednesday, by Friday I was completely not driving not really functioning and I had pencilled 24 attacks before lunch, as I was about to call my GP, my Neurologist called to say he viewed my MRI and that I was to rush to Monash Hospital Neurology Dept immediately and I would be there for 4-5 days.

During my stay they placed my on a steroid drip and gave me a LP (lumbar puncture), during every stage of them trying to grow new cultures they would come in and tell me that MS was still on top off their list! and then when all avenues were tested with the LP I was diagnosed with MS. WIth three lesions on my spinal cord and two on the base of my brain! So good luck and hope that helps you! It was an actual relief a little to be told it was actually something and not a lot of weird things in my head!

Good luck!

shann xo

Hello and yep! pretty obvious by everyones posts that it effected us all soo differently?

I went to the doctors a year before my diagnosis with a weird patch on my upper thigh that was dead numb, they told me it was something else and it will go away.

Which it did and then my big right toe went competely numb, I thought it was due to forcing my feet into bad shoes one night! but it never went away.

Then abourt6 mths later started feeling really tired, cranky, lack of patience, couldnt find my words, tongue tied, confused, felt like my brain was completely full and that I could not learn another thing! I also had a patch of a palm size on my upper arm that went numb.

That numb patch had these annoying stabbing itchy pains that I had to punch! it then travelled down my arm turning my thumb completely numb, to the point I cut it well and didnt notice until the salad was covered in blood!

I also was experiencing massive bowel and bladder changes, and having to go at least 6-7 times a night.

So off to my GP, who did full blood tests, CT scans which all came back clear.

SO he sent me off to a Neurologists, who booked me in for a MRI, this MRI was forecasted 6 weeks from date off first visit.

During that time I noticed while removing my apron at work electric shock like sensation down my back, which progressed into if I tilted my head it did it everytime and began making me feel very light headed.

I then began to get attacks on my left side, that came on like a contraction, every nerve in my whole left side would seize, making my fingers and toes curl and the left side of my face screw up! It lasted about 10-15 seconds and I had to breathe it out no different to a contraction to ease the sensation.

What went from having 1-2 of these a day, became 6-10, I raced to my GP who then fast tracked my MRI and brought it forward the last three weeks. I then two days later had my MRI. That was a Wednesday, by Friday I was completely not driving not really functioning and I had pencilled 24 attacks before lunch, as I was about to call my GP, my Neurologist called to say he viewed my MRI and that I was to rush to Monash Hospital Neurology Dept immediately and I would be there for 4-5 days.

During my stay they placed my on a steroid drip and gave me a LP (lumbar puncture), during every stage of them trying to grow new cultures they would come in and tell me that MS was still on top off their list! and then when all avenues were tested with the LP I was diagnosed with MS. WIth three lesions on my spinal cord and two on the base of my brain! So good luck and hope that helps you! It was an actual relief a little to be told it was actually something and not a lot of weird things in my head!

Good luck!

shann xo

Hi Shann and welcome!

Good Lord what a time you’ve had! Most of us wait ages for a diagnosis (dx) and by the time we get it we’re sort of used to the whole idea of MS.

Have they told you what type it is yet? If the sterioids helped, it’s more likely to be relapsing remitting (RR)… if not, it’s more likely to be Primary Progressive (PP). The lesions on your spine are another indicator that it’s more likely to be PP… but they might just monitor you for a year or so before they say what type.

The electric shock feeling when you bend your head is called L’Hermittes Sign… used to be called Barbershop Syndrome because men would notice it when putting their head forward at barbers.

As you have seen, we all have different symptoms and progress at different rates. PPMS can also stop progressing, or continue to progress but very slowly. Also it can vary day to day so some days are much better than others.

HUGE amount of research are happening right now into progressive MS… so there is real hope of good treatments soon.

Often it is a big relief to be dx… as you say… you know what you’re dealing with… but that doesn’t mean that you won’t have moments of panic or days when you can’t believe what’s happened. Come on here if those feelings come along… we can help! This is a great place to get support, but also to ask questions as very often we know more than the neuro’s, having experienced it ourselves.

So welcome to our little gang. This is the PPMS gang but the Everyday Living board is for everyone with MS and is good too with a much bigger user group.

Nice to meet you and hope you’re doing ok with all this happening in your life. We often say to take it ‘one day at a time’ and it really helps a lot.

Take care and see you again soon,

Pat x

Hi Pat, I wonder just how many of us your posts help? As for me, I really do gain so much comfort from your help and advise. Thanks Nina x

Oh thank you Nina!

Pat x

Well to begin with thought I had pulled a muscle in my leg as it kept dragging went to ciropractor and as this was part of my Health plan decided to go and get it sighed off by GP.

Spoke to gp she asked what else was going on, she then sent me to neorologist and within three weeks diagosed with MS.

Saying that took a long while for me to accept it was there

My husband was told in february 2013 and we also seen mri pictures with lesions on his brain he is waiting to see another ms specalist at another hospital in april 2013 his syptom are vision loss in both eyes for last 2 years ,weightloss, stomach pains,constipation,moods,tremors on right side of body lasting upto 15mins at time and now left hand, double vision,dizzy spells, speach problems slurring and mixing up words,confusion,forgetfulness,bladder problems,sleep problems,sweating at night,cold in day,half nose cold other warm,leg kicks leg twists inwards,leg drags, tierdness.Think thats everything lol xxx julie

Interesting timing for me to drop by… MS was suggested by my Family physician but I knew he was wrong. I come from a large family; very extended - nobody in any generation ever had MS. Besides I am too old; presently in my 60’s & very active in sports.

My Neurologist sat me down in his office two weeks ago so we could view my brain MRI. Very impressive with these little white lightning bolts heading from the sides of my skull into the middle of my brain. It was impressive until the Neurologist told me the lightning bolts were bad - they were proof of Primary Progressive MS & that no drugs had been approved in Canada to help me. He suggested I research the topic until we meet again in early March - and that I quit my 45 years of excessive smoking & drinking immediately! The beer has vanished but…

Initial symptoms over the past few years were lack of bladder control, my right foot shuffling when I walked & a lack of balance. I chalked this up to spinal arthritis for which I had surgery last July - and of course, excess drinking. Did not realise I was being hit with a double whammy.

Out of curiosity, other than staying active - any suggestions?

I’m sorry to hear of your predicament … I, too, am waiting to see a neurologist tomorrow, with increasingly frightening symptoms. I’m in my early 60’s as well and thought I’d be ratter old to start with this?

Now im not sure if this comment will post but I felt sorry that no one had replied to you when you’re obviously worried as well.

good luck to you.

Im new to all of this, so Im not well informed yet. But I think if you had an MRI and it was done properly and showed no lessions then I think you are clear. There are lots of benign things that can cause twitches eg BFS. And anxiety can certainly make twitching worse.

I know if I was you then I would now focus on addressing the anxiety, which I know is a big battle in itself.

best wishres

Rupert

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