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Do I have MS?

I am 48 and have had problems with my left leg since my 20’s after contracting glandular fever and later diagnosed with restless leg syndrome. I have got used to experiencing involuntary twitches and pain in left leg and I am frequently woken up from sleep due to dull, ache pain, but I have just got on with it. These symptoms have come and gone in intensity over the years.

More recently I have been experiencing chronic fatigue, brain fog, aches and pains all over and dizzy spells with blurred vision especially when walking quickly. This has led me to consider what is going on ?MS ?menopause or ?sciatica as I do suffer with lower back pain as well. I have disc problems in my neck and had a trapped nerve several years ago which affected my left arm/hand. The MRI showed that I have degenerative changes to my c-spine, so I must assume my lower back is also affected as well. Last week I had extensive blood tests which have come back normal for thyroid, RA, inflammatory markers and B12 to name a few. My blood pressure is high at 150/100 and I waiting to get fitted with a 24hr monitor. For the last 3 weeks I have been waking up in the morning with a numb left big toe, sometimes this radiates to my whole foot, and I can get pins and needles as well which normally goes away after I have got up and walked around. It can return though if I have been sitting for long periods too. My question is would the numbness stay in my toe/foot all the time if it is MS or is this possibly caused by sciatica and linked more to positional changes? My GP has asked me to return so he can conduct a full neurological exam and I’m getting worried.

Thank you in advance.

Hello Pink Lily

sorry to hear about your back pain.

your GP sounds very thorough and if he suspects ms will refer you to neurology.

easy for me to say but don’t get fixated on the notion that you have ms.

it takes forever to get a diagnosis, which is good in a way.

i did a course on Breathworks Mindfulness Medication for Pain relief, which uses deep breathing to help with pain.

it really helps, the pain remains but you cope with it much better.

look into it and give it a go.

wishing you well

carole x

in 1980 i would wake up every morning with a dead arm and hand. it drove me nuts. the doctor said stop smoking as he said it was the reason. i smoked less the 5 a day.

1981 had awful what i thought was sciatica pain i had to fly to kenya with this pain six months it lasted but xrays were clear.

in 2016 after 10 years after going blind in 2006 i was finally diagnosed with MS. Primary progressive.

I often wonder if the left side numbness was a sign of it but will never know.

I do think you need a full neuro exam it probably wont be MS but could be something else similar.

I found ot by accident from a blood test i had which i paid for privately that i had 2 viruses, one was epstein barr virus and it was showing it was reacting to something even though it was latent it was at >95 when it should have been <5. the other virus i cant rember but it was a common one.

I have since read that they are connecting EBV with onset of MS.

Thank you both so much for your comments. I will look into mindfulness medication Carole, hopefully it will de-stress me during this long waiting game. Crazy Chic, wow you have been living with this for a long time. Do you still have the left sided numbness and blindness?

I have also read read there is a link between EBV and onset of MS which is worrying as I had glandular fever in my late teens. However I am also trying to rationalise the leg/foot problems could be down to sciatica. The not knowing is the worse as I am now overthinking all my symptoms…old/new! I can’t get a GP appointment until the 12th December to have my 24 hr blood pressure monitor and Neuro assessment repeated. The practice locum did my last assessment and she wanted to run blood tests before referring me. The practice doctor now wants to see me, hence the wait.

I am now experiencing numbness to the left side of my cheek/corner of mouth, with my top molar teeth feeling weird. Should I be worried? Do I need to try and get in sooner?

If it’s not MS what could it be? Wish I knew.

just saw my typo.

should read meditation not medication

just one letter but it makes a lot of difference.

Hello Pink Lily

One of the most infuriating things about MS is that symptoms of other diagnoses often resemble MS.

CC is right that there is indeed a link between EVB (aka Glandular Fever) and MS. But that doesn’t mean that because you have the antibodies for EBV that what you are experiencing is indeed MS.

Your GP sounds great. Exactly what’s called for, an initial neurological exam, then a referral to a neurologist if your exam warrants it. Just be aware that even if your GP suspects MS, s/he can’t diagnose it, only a neurologist can, and only then after an MRI scan at the least, possibly a lumbar puncture too.

And as far as what else it could be, there are too many things to point to.

Just keep in your mind that regardless of the wait, nothing will change the outcome of the tests. So try not to worry. I know it’s easy to say, but difficult to do. Just try.

Sue

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Thanks Sue, very wise words indeed and much needed to reassure me at the moment. I’m a half-glass full person so I know whatever the outcome is, it will be ok. Apologies to all as I’m not normally a panicky person! Just don’t know enough about neurological conditions.

I now have a GP appointment next week with the sudden onset of the new symptoms, so that has helped me a lot today.

‘Meditation’ is much better than medication…thanks Carole.

I wish you all well on your journeys.

Karen x

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Karen all i can tell you is this. Its the way i dealt with it. I gave up with google and i decided if it is MS then it will present itself properly one day and i will get diagnosed.

I had no idea what it was. I never thought i had MS, it was my neuro who mentioned that to me.

After two positive VEP tests 10 years apart and several confirmed lesions on my spine my neuro told me i had progressive MS in 2016.

My left eye still aches and hurts at times. I gave up totally worrying about everything that was going on with me. All I know is this. I went from walking normally and taking dog for a walk, to now reclining most days for hours as i am exhausted, have pain 247 in my waist down to my feet, spasms, burning, tingling, prickling, it never ever stops. My bladder has been a nightmare for years its so bad now suddenly without warning i just will pee myself. (still that could be age related lol).

I dont bother with the doctors anymore, i have been ill since 2006 and still here. still sort of a sense of humour lol.

I just think you have to wait and see what it is. the more you stress the worse it gets. I just felt if i stopped worrying about it well it would present itself and it did.

BUT being young its important to get diagnosed early so you can get DMD. It could be anything even high blood pressure can cause some odd symptoms. so try and relax a bit ok. I have high BP its in my family.

if you have a full neuro exam your GP will know if it points to neurological issues.

My left side is always weak and numb and gotten worse. My initial symptoms are still there albeit a lot worse and i am slowly progressing into an electric wheelchair but fighting hard to keep on my legs.

xxxxxxxxxxxxx the guys are on here are brilliant and knowledgeable so stick with them we are all sisters and brothers in the same boat. xxx

Hi Crazy Chick,

Thank you for your kind words. You just know when things are not right with your body don’t you? It is a matter of time waiting and seeing what happens and you are right…worrying about things won’t help!

I am still experiencing the same symptoms, but hope there is a simple explanation…high BP, reaction to the flu jab I had recently for work…who knows??

I have found this forum really helpful though.

Karen x

Morning karen, when do you see the GP for your neuro exam?

Yes this forum is lovely some great guys on here. I hope it isnt MS and sure it will turn out to be something that can be sorted easily. Its all so frightening our bodies are weird i had no idea the brain could do so much stuff to us lol. I also have another thing rare then MS called Transient Epileptic Amensia, so having MS is like a walk in the park for me lol. If i have an attack of TEA at least my brain switches of for minutes, or an hour or two where it doesnt make new memories.

could be the flu injection, you know everyone so far i know who have had that one this year has been ill. not sure why.

Let us know how you get on. Remember no more googling. what will be will be. xxxx

Ha! Crazy Chic, yes I promise no more googling for myself! However I may need to do a little research into what TEA is as this is new to me, but it doesn’t sounds nice :frowning:

What came first for you the MS or TEA?

I see my GP on Friday xxxx

well good question. I started really getting ill 2006 although for several years and the onset in 2000 of blindness twice etc so i think MS. in jan 2007 i lost my memory completely i had no idea where my husband was kept ringing my daughter constantly all i could remember before this is dying my hair. My daughter came round and found me sat on my sofa totally with no memory and confused fully dressed with smart new hair. i have no memory of doing it. slowly my memory from previous came forward. the doctor said i hadnt had a stroke and i was made to rest. slowly over the day my normal memory came back. i was told it was an episode of transient amensia something or other. it freaked me out i can tell you.

over the years i had very may small episodes. no memory of something also odd smells burning and onion horrible. until again i think it was 2015 a biggy and i ended up in hospital and saw a neuro specilising in transient epileptic amnesia. he was convinced i had it. he let it out that my records showed i had MS but he felt it was this disease which is very rare running alongside my MS I would point out he didnt know i wasnt told i had MS oops. I take a tablet every night now and touch wood only had tiny little things. it did take some of my autobiographical memory and i struggle to remember much of my past or childhood. MY test showed something was going on.

http://www.medlink.com/article/transient_epileptic_amnesia

I am still wondering if its to do with the MS and the eye issues but i tend to not stress too much over it as its too scary lol.