Last reply 6 years ago
concerned???

Hi everyone my name is Jessie. I was suspected of having ms 3 years ago, and only had a new lesion appear in October last year-i started copaxone immediately and am still taking it. But have started getting pins and needles in my feet, which has progressed to when im tired up the back of my legs. As well as this, there is also the buzzing feeling when i move my feet. Does this mean it is progressing? Or there just new symptoms and not too much to worry about? The only attack i have had was optic neuritis, which again was three years ago when they first picked it up. I have RRMS.

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Lillylilly
6 years ago

You should speak to your MS nurse but the pins and needles is just a lovely side effect of the MS. My tingly hands and feet have just started again, after having about a year free of them. It’s more of an inconvenience than anything else.


jessie
6 years ago

Thanks Lillylilly. Its funny because prior to October when I got my official diagnosis, I had no symptoms really, other than fatigue etc. (but I try not to put everything down to ms). But about a week after my diagnosis, I started getting the pins and needles in my feet, and now it has progressed to my legs. I really havent had a bad run with the whole MS thing-other than the optic neuritis, I’ve not had any other attacks (touch wood). So i’m blessed for the time being, i just didnt know if it was a sign that things were progressing. I’m only just starting to deal with the diagnosis now. We lost 5 family members last year, two of which were in the same day and 3 of them were to cancer, so I didn’t have time to deal with this. The nurse thinks its remarkable that last year alone didnt send me into a relapse! It must be uncomfortable having pins and needles in your hands though right? Nice to talk to you :)xx


Lillylilly
6 years ago

Oh my God, you’ve had a really tough year.
Usually a relapse is considered as such if you have the same symptom for over 24 hours, but it doesn’t mean your MS is progressing.
I think it’s only deemed to be progressing if the time between relapses is shorter, and if you take longer to recover.

Having the hand pins and needles is a nightmare. It goes numb too sometimes! If I walk for longer than ten mins I get pins and needles all up my legs too. Fun and games!!!!


tracy
6 years ago

i was told i had blood clots in my legs, thats why i had so much pain and numbness. they couldn’t find the blood clots though! then Optic Neuritis set in, well it is MS! so i take meds so i can walk and i take copaxone. the buzzing in my legs never goes away, but i can walk and that is all that matters to me.


Pulpculture
6 years ago

Hi Jessie
Keep your MS nurse up dated. It might be a simple solution of moving you onto another DMD (i.e. Betaferon.) I was on Copaxone for a year and a half and it was great for me. Then I had a couple of minor attacks and they moved me onto Betaferon. I have been on this for a couple of years and it is working well. The general rule of thumb is more than a couple of attacks (not related to a bad cold / flu etc) means it might be better to try another drug.

Take care.

Matthew


jessie
6 years ago

Tough year. my god. well, my mother in law died on the 16th of April (she had bowel/liver cancer but died from pneumonia with us by her bed.), on the 16th of August we got a phone call at 4am saying her father had passed away (so my fiances grandfather, again bowel cancer). We spent all day with his wife etc. That night we came home, and had to call the vet around to put to sleep our german shepherd (again, cancer), in september, a very good family friend (dad figure to me) who was a truck driver, was away with work, and was phone dead by a rescue team when he wasn’t answering his phone (heart attack.) My grandfather fought for his life in ICu after his 1st, 2nd, and 3rd bowel ops went wrong (these were all within the space of one week, and he is 80 and SURVIVED), and then i was officially diagnosed with MS at the beginning of October (i think!!! i cant keep up with all the dates). In amongst this, my fiance broke his foot, our budgie died, they suspected my brother had a brain tumour (which was not the case), the vet that i work with ( i am a veterinary nurse) had a massive heart attack (he was actually in the herald sun last week). He died, but managed to be resucitated, and has fully recovered, two days ago we found out my fiances grandmothers (his mothers mother) cancer has returned, so she is living on borrowed time. Oh, and did anyone hear about Brides of Melbourne going bust??? Well, I’m getting married in October, and I got my dress from there. Im jinxed!


jessie
6 years ago

But I was wanting to ask, how do you know the difference between symptoms. Is an attack, a constant symptom, and a symptom something that comes and goes? i cant get my head around it all!!!


natalie86cc
6 years ago

Hey Jessie,

Gees! What a rough year – but you survived it, so things can only get better from now on. My partner Paul also suffered with constant pins and needles. Started in his toes, and spread upwards towards to his thighs. Really uncomfortable, and meant he wasn’t able to exercise because he couldn’t feel his feet touching the ground.

The paresthesia (numbness & tingling) was his second attack, and led to his diagnosis (ahh…yes, the ‘incredible’ medical practice of two, different MS attacks having to happen before a diagnosis can be made) – his first attack was also optic neuritis, and we knew it was MS then!

However, this being said, he’s not on any DMD’s, we follow a vegan diet, with Vitamin D & B supplements. He went for CCSVI treatment last December…and at present he is symptom free! So to answer your question…yes, the numbness and tingling can go away, it’s just a matter of time.

I may be wrong here, but this is how we think of an attack & a symptom. An attack is when something happens for the first time i.e. the morning he woke up and couldn’t feel his feet – the attack continued for months (at least 3 months), and sometimes if he was more tired than usual, or stressed from work, the symptoms (tingling & numbness)of the MS attack would flare up – this is not a NEW attack, just a flare-up.

With MS there are some symptoms that are more prolonged than others – optic neuritis fixed up within 3 days after steroid transfusions, the numbness & tingling continued constantly for 3 months, sometimes flares-up in heat, fatigue is constant (and alleviated with daily naps), and his MS Hug comes and goes also with tiredness and stress.

We consider Paul to be in remission though – because his symptoms are NOT constant, and only flare-up ever so slightly in times of tiredness, stress, hunger, etc etc!


jessie
6 years ago

oh my curse isnt over…coming home from work yesterday i was driving behind a truck, when a ute pulled out infront of him. massive smash…i was first on scene…running to the ute thought the driver was dead…this was not the case. all passengers survived. its gotta end soon right! oh ok so that makes sense. well my pins in needles in the feet are pretty constant, sometimes they disappear, but never for more than hours. but the rest only comes when im tired. ive only had one attack, and that was the optic neuritis three years ago. i was given option of treatment when a new lesion appeared, that was shown in my MRI in september last year. but thats it.i take copaxone, vitamin d, fish oil tablets and try to maintain a healthy diet. so u and ur partner both have ms????


jessie
6 years ago

how did u find the ccsvi treatment?? are there any risks?? this interests me.


natalie86cc
6 years ago

Oh my word, shame Jessie, that’s hectic!

I don’t have MS, but I am the one who researches everything/joins the forums/etc – I don’t like the really negative comments that I sometimes read in articles, and forums, and would rather Paul doesn’t have to read things like that…

So I have asked him if I can take control of the research side of things, and I relay all the information back to him – send links to positive stories etc etc.


natalie86cc
6 years ago

Found out about CCSVI through another forum that I belong to – The SWANK DIET forum (really supportive & helpful). A man on the forum underwent the procedure, and his results were amazing…so we did our research, and went for it too!

Had to have it done in Belgium – fantastic hospital & staff – one of the best decisions we have ever made, although very pricey, and will be going back again for checks/precedures every 5 years.


jessie
6 years ago

oh ok cool. well done 😀


jessie
6 years ago

yeah, there running clinical trials here soon i think. im a little scared of treatments lately, my neurologist tells me certain things are fine, and then my nurse wards me away from them. so now im terrified to change from copaxone. i was just curious as to whether they told you about risks involved etc? and what the procedure involved for him?


natalie86cc
6 years ago

Urgh, don’t even get me started on Neurologists & MS nurses – nothing against the people personally, but in terms of their advice – no thanks!

We were told to ‘carry on as normal, take the drugs, and live a normal life’. How unrealistic and talk about a taking nonchalant approach to such a life-changing disease. They don’t care about our ‘diet changes’, they aren’t against them, but they don’t exactly support them either…regardless of the positive changes we have seen, they simply put it down to ‘remission’ i.e. it will come back!

CCSVI is INCREDIBLY SAFE!!! The risks are mimimal. Have a look at this blog, it’s written by Dave, and he’s the one who helped us when we were making the decision about CCSVI.

http://www.liberatedave.com/

http://mylifewms.blogspot.co.uk/


jessie
6 years ago

thankyou so much…i will check it out.


DJDsouza
6 years ago

Am not convinced by the effectiveness of CCSVI as I have met people that haven’t had any benefit from it, so reluctant to spend tens of thousands of pounds to have a treatment that’s not guarantee to work.

I prefer to rely on vitamins, minerals, turmeric and meditation (Buddhist or Qi Gong – was relapse free while doing Qi Gong, but shortly after stopping, I relapsed! Need to get started again :))


abbie1982
6 years ago

Hi Jessie,

I am really sorry to read what an awful year you had last year. I am not surprised that the MS took a back seat in all that was going on.

I was diagnosed just under a year ago, and from the moment of the first attack in October 2010 (paralysis up the right hand side of my body and in my jaw), which came as a complete bolt out of the blue, I have suffered from pins and needles. Some days it drives me crazy. It is there for the best part of the day, whether in my left leg or right hand or one thigh…wherever. It is worse in my hands and feet and has gotten progressively worse in the months that have passed.

My understanding however is that pins and needles are very common in people with MS and do not mean that the condition is progressing, in fact it is one of the early symptoms people often suffer.

I have RRMS, but between relapses (I’ve had three so far) the pins and needles have never cleared up.

I too have recently started Copaxone. I didn’t get on with interferons – never got over the flu like symptoms. So far it is working well.

Interesting to read about Natalie’s partner’s experience with CCSVI, that is not something I have really researched. 😎


madmaz1
6 years ago

Hi all , Just joined today and find this all very interesting but not understanding it all at the same time … i havent been diagnosed yet and had been suffering symptoms for years , i used to have pins and needles now and again in my hands , now i have it in my hand ,arm foot,leg and face , i also have more symptoms and its so frustrating going to the doctor so often and being told so many different things … im going into hospital in 2 weeks for the mri scan and lumber puncture :S not looking forward to that at all , its all very scary but i think i will be more relieved than upset as this has gone on so long .. i will just be glad to have some answers x


lottie
6 years ago

OMGosh that sounds awful!I hope the bad luck will come to an end soon!I recognise th thing you say in your post it.

I had a bout of pins and needles together with other unexplainable symptoms after i had my little girl that was 5 years ago. Back than I did not know that i had MS but i did know that something was seriously wrong. When I walk up the stairs I nearly dropped my daughter her dad was behind me on the stairs and i could give het to him as my legs just went. I could not plan or think straight,I struggled trough my days barely able to stand up long enough to change her nappy. I was so tired so so so tired felt absolutely worthless. People kept telling me how it was prop just the Baby blues and the lack of sleep. I came to a point wherebyI did not know if I was depressed because i was so tired or so tired cause i was depressed. Went to my osteopath and he did not understand how pins and needles could go up from my feet to my legs. Te cognitive problems were blamed on Pregnancy brain by my GP.

Symptoms went and apart from being really tired did ok with the odd bit here and there but took no notice.

It took another 2,5 3 yrs before I took a tumble down the stairs. After a dodgy episode where I use to wake up emotionally unstable and confused very dizzy just not right really. I had to call my husband to come home as I just could not care for my little one as I could not move my whole body felt like it was made of led. I thought I had serious issues but I thought it was all just in my head….turned out it was… just not the way I expected Than I had a black out cut my head open badly and ended up in a scanner what was suppose to be a stich up turned in to a 4 day stay in hospital where lumbar etc were done…diagnoses MS. I’ve been in and out of scanners more than I can count but every half year there seemed to be no progress lesion wise. And relatively symptom free….however

At the moment i’m experiencing pins and needles in my right foot and in my hands. annoying but no biggy. how ever last friday I had my results of my two new scans and they show active lesions meaning i’ll be on meds soon. currently awaiting trial entry for ocrelizumab.

@madmaz MRI are painless just noisy 🙂

I can only speak of my own experience but My Lumbar puncture was painless (it was the first time for the girl who did it and she was more nervous than I was. DO however lie flat for AS LONG as possible! The procedure was painless and due to me lying completely flat afterwards for what seemed a lifetime I had no headache at all. I could see I hope your diagnoses is not MS but at the same time for me it was a relieve to know what was going on ad most of all was not crazy or lazy!

X lot


madmaz1
6 years ago

@ lottie , thank you .. i used to only ave the pins and needles occasionally , it started around 6 years ago , but recently i have them all the time .. its more frustrating not knowing whats wrong .. i suffer bad dizzy spells also , and a few other symptoms .. i have had lots of blood tests done which i hate but M.S doesnt show up on them , so i was pleased they came back clear .. ive had multiple heart ecg,s as they thought thats what the problem was .. gladly it wasnt , but now im starting to struggle to walk and my hand is becoming less useful 🙁 i have young kids and have no idea how this will affect them if i get worse with still no diagnosis xx


jessie
6 years ago

Thanks abbie1982. I know most people get them, just went from being symptom free, to feet tingling and now this. They suspected I had MS 3 years ago, and I have been going for regular MRI’s since so they could keep an eye on me. Alot of you have gone through so much trying to get diagnosed, I really take my hat off to you. Like I said, i have only had one new lesion in 2 years, and my only attack has been the optic neuritis, which was back when it all began. When my neurologist was writing the referral for my last MRI (the one that showed the new lesion) he said, I don’t think you have MS, and if this scan is clear, you will only need to come back in 5 years for one more. After this time, you should be pretty safe….unfortunately i was not. But I didn’t go through test after test, I didn’t even have to have a lumbar puncture. You guys are all amazing. 🙂


jessie
6 years ago

Sorry I correct myself one new lesion in 3 years!!!


madmaz1
6 years ago

sorry folks this is gonna sound like a stupid question , but i have pins and needles all the time it never goes away , most people here sound like they get them every so often , so why do i have them 24 hrs a day 7 days a week ? i dont know much about this yet so im learning as i go x


Gem
6 years ago

Hello. I had pins and needles/numbness/pain in my feet for 5 months. It did eventually go though and I’m now symptom free again and back in my precious heels! Fingers crossed it remains that way! The pain/pins and needles etc does come back when I’m tired or too hot but generally it’s not there. I had optic neuritis too 2 years ago. Vision is fine now but again if I’m stressed/tired I can get a bit blurred vision/colour gets washed out.

Hope your feet/legs are better soon!

X


thechunkeymonk
6 years ago

@madmaz how long have you had the symptoms? Pins and needles in my feet and legs were the first symptom I had about 10 years ago, and this lasted for about 2 months before it went away.

It was initially misdiagnosed as Guilliame Barre Syndrome, but when it came back a couple of years later they quickly realised that this wasn’t the case. My pins and needles developed into a much heavier numbness over the years, which never completely disappears between relapses, but it does ease, and importantly you do start getting used to it. I’d say that my average pins and needles / numbness symptoms would last for around 3 months before they dissipated. How does this compare with you?

I started on Tysabri about 7 months ago after the numbness moved into my hands, as this severely affected my work – but so far this has really helped. My numbness and fatigue is definitely improved – I’d go so far as to say that this is the best I’ve felt in a few years. I still have minor complaints, such as little bouts of optic neuritis and occasional bladder issues, but overall things are greatly improved. I understand that it isn’t much fun, but there are things out there that can help – this website is also a great place to discuss your worries. Its amazing how many people have been through similar things, which helps you to feel like you aren’t alone in this.


madmaz1
6 years ago

@thechunkeymonk , thanks , i have had the pins an needles in my hand, foot and face constany for 5 months now , i used to only have this in my hand and it has gone on for around 6/7 years now , and over the past week im finding it difficult to walk and seem to be dragging my leg along , very frustrating as this has me stuck at home when im usually a very active person .. its really getting me down but the doctors say there is nothing they can do until i have had all tests and results , but where i live its a 14week waiting list just to get the scan so im on painkillers that dont help at all xx


thechunkeymonk
6 years ago

@madmaz I’m sorry to hear that things are moving so slowly. It does sound as though you’ve come to the right website – whether that’s good news for you or not I don’t know though!

From my own experience my diagnosis was a bit of a surprise, but that is more because I was lucky and managed to have my scans / lumber punctures done relatively quickly. The symptoms that you’re talking about sound really familiar though. Whilst my relapses in the past seemed to dissipate more quickly than what you’re experiencing, I had a lot of what you have mentioned such as pins and needles in a lot of my body (feet, legs, torso, arms, hands) and also suffered from leg drop and fatigue.

I don’t know whether you’re wanting to try DMDs and if you are, what treatment you’ll be offered, as there are big variations from one region to another. However I can only speak positively for my treatment. Beta Inteferon (rebif) seemed to help for a long time, and when it seemed to stop being as effective I changed to Tysabri, and I have been relapse free (touch wood) for the last 7 months – the longest period without a relapse I’ve had in 5 years.

Like I say, I don’t now how things will pan out for you once your scans take place, but hopefully you can take solace in the fact that if you are diagnosed with MS, there are options out there for you – with more being trialled all the time too. In the meantime I can understand your frustration – one of the things that MS has taught me is to be more patient, as there were times in the past that were very frustrating to deal with.

I think it will also help your state of mind once you’ve actually had your scans etc and been given a diagnosis, as it should hopefully give you a certain amount of closure on the uncertainty, and a focus on being proactive. It certainly helped me, but everyone is different!


madmaz1
6 years ago

@thechunkeymonk .. i do feel as if im in the right place also as when i read of how other people feel i can relate to most of it . i recently moved doctors as have suffered these feelings in my hand for a long time and i heard every excuse going and never had anything other than blood tests . as soon as i moved doctors they did a blood test and because nothing showed up they have referred me for the scans i need , im just glad i moved … and as i have said before its so frustrating not knowing . i think when they confirm my suspicions i will probably cry with relief that they finally believe i feel like this and im not crazy lol x


meg
6 years ago

I had pins and needles in my hands very badly for months not long after I was diagnosed. I typed using my fingernails because it was painful touching the keys and got a voice activated dictation machine because I was having problems pressing the record and stop buttons. It wasn’t a great success as it would either be slow starting and miss the beginning of sentences or reluctant to stop and it would keep taping the instructions ‘Cap ital bee’ rather than acting on them ‘B’.
I couldn’t hold a knife or peeler, so we left the skins on potatoes and carrots. I bought a food processor to slice onions, make pastry and crumble. It took a lot of the pressure off and meant that even if I wasn’t up to making lunch I could do pudding. I recommend buying from a shop where you can try things out rather than buying on line. I couldn’t lock the bowl in on my first choice but could on a less upmarket model

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