Hey all,
Am totally new to the this group. I hope I have posted this in the right place???
Been having symptoms that suddenly came on! My toes and feet have pins and needles, and my hands and arms and now more recently my face!
It’s pins and needles and a burning sensation too. Went to the docs today I have been referred for blood tests first. But, the GP did some tests today in terms of reflexes and my leg strength. My right leg is weaker than my left which I had noticed when I was playing football. I also tire really easily and my legs feel weak.
Am really worried but won’t know anything until my bloods come back, is this how the symptoms of MS start? As the doctor said she wasn’t ruling out. Although I know she can’t say much because I have to wait for the bloods to come back and then she said if nothing shows up there she will refer me to a neulogist.
I had my eyes checked today and they said they were good and compared it to my last sight test and looked in detail on the images of my optic nerve.
does the optic nerve always get damaged with MS.
sorry for the essay just wanted some advice x
Hi,
Your symptoms sound very similar to mine when they started. I’m currently waiting for an MRI and blood tests. My neurologist feels it sounds more like anxiety with me, however I should say that I really disagree with him on that one (but then what would I know compared to him I guess!)
My eyes have hurt recently but weren’t an original symptom. From what I’ve read everyone’s ms symptoms are different so you don’t need to necessarily have eye symptoms to have ms although they are common among people with the condition.
I know it’s easier said than done but I’d try not to worry too much at this point, there are so many things that can cause the pins and needles you describe. Could it be you have had a sporting injury of some sort that could have caused a trapped nerve or the weakness?
Good luck with the blood tests and fingers crossed it’s a simple answer like a vitamin deficiency in your case.
Charlotte xx
Hey Charlotte,
Thanks for responding, I appreciate it.
I literally can’t stop worrying. I have been back and forth to the doctors quite a bit last year with my stomach which all resolved itself, then my hair started thinning a bit and breaking. I saw a Trichologist for that and it started sort of getting better. Then I saw a chiro for my back which seems okay now. Weirdly the other day my hand went really cold and numb a bit like Raynauds but never had that before! Then started googling everything!
I am 37 now and feel like I can’t even do what I used to do, Football ruins me I feel so weak playing it. And going to the gym I can’t last very long in there. I also get really hot I can’t control my temp. That’s been the case for years. It’s been know to snow and I am in my vest top!
how long have you had your symptoms for? I know what you mean we know our own bodies in terms of how we feel.
I just want the tingling to stop and it’s so weird that it has spread to my face.
How long is the wait for your MRI?
how have you been feeling since you spoke to the doc? Xx
You sound so similar to me! I have also had lots of stomach issues which I’ve still never been given an explanation for but have near enough settled on their own. Exercise still makes it hurt again and I have no idea why. I end up just running through the pain when I go for a run as I can’t stand being inactive but I have no idea whether it’s a sensible thing to be doing or not!
i haven’t had any weakness yet touchwood but can relate to the cold feeling. For a while in January my hands were overly sensitive to cold it seemed, like whenever they were wet they felt freezing and even the air felt cold when I breathed in, a bit like the feeling you get when you breath in after having a strong mint. It was really weird and so hard to explain to anyone else.
i also had tingling in my face but it’s mostly over my head which is a very disturbing feeling!
i actually had my eyes checked again today at the hospital as I was so worried about the pain but the doc there laughed at the idea of ON and said definitely not but dry eyes. So left with a prescription for eye drops feeling even more confused. Never been told my eyes were dry when they’ve checked them before but I guess better to be told they don’t think it’s ON than be told they do!
my mri is in 10 days time. I’m so nervous it’s unbearable!
my neurological symptoms started late October. But i did have some pins and needles in my feet four years ago that lasted a few weeks but it was brushed off as nothing by the GP, then I forgot all about it until this!
How about you? How long have you had tingling for? X
Hi to both of you.
MS usually begins quite slowly…but not always.
It is the strangest of conditions in how vastly it varies from person to person.
I`ve had PPMS for going on 22 years and NEVER had any eye issues at all.
My first symptom was a heavy left leg, closely followed by foot drop. Foot drop is really common.
There are so many conditions which mimic MS…I got wrongly diagnosed with one of them.
Neurologists are the folk to do MRIs, LPs etc…GP`s cant diagnosse MS.
Even if you do get diagnosed with it, try not to panic (I know, easier said than done) but there is still a good life to be had with it. There are thousands of people who are proof it that.
With good support, lots of rest and this forum…you`ll find your way through.
Love Boudsxxx
Hey Charlotte,
How have you been doing today? Is your stomach all settled now? Was it like gastritis or anything?
Fair play to you going running how far do you go? I am going to start doing more exercise just find it hard with these symptoms. But then is it worse if you don’t exercise?
That’s good about your eyes. Have you still got the tingling feeling in your head?
Have you already had blood tests? Good about the MRI although can appreciate it’s really nerve wracking,
For a few weeks. It’s just really worrying as it’s scary isn’t it. I had my blood tests today the receptionist was really sweet she moved it to Monday but then called me back and said they had a cancellation today. Just got to wait now.
I just wish the symptoms would go away and just get better. It’s not like we can even take anything that really helps. Would exercise help I want to just go for a run but worried it will make the pain worse and my legs too x
Hey,
Thanks for replying.
Can it take years to diagnose it’s just such a scary time. Is yours really debilating or with the right support is it okay. I think it’s just with all the symptoms coming on so suddenly it just feels so worrying.
is foot drop the same as a heavy leg. Is it still possible to play sport, exercise and run?
I know that you said everyone is different but is the tingling in the face dangerous!l? An early diagnosis is surely better than waiting ages as wont the condition potentially get worse depending on what type it is?
Apologies with all the questions xx
Thank you Bouds for your reply.
I’ve read some of your posts in other threads too. I can’t believe how long it took to diagnose in your case, it it such a variable condition as you say. but it’s good to know that a happy life can be led even if it does turn out to be MS. A friend of mine’s mum actually has it too. It took 7 years for her to be diagnosed and she manages to live well with it. She said she found her diagnosis a relief more than anything and it was the answer to so many questions.
Thanks again for the positivity and support.
love Charlotte xx
1 Like
Hi,
My stomach always flares up a bit when I’m anxious about something - so now! But it’s so much better than it used to be. I had an endoscopy about a year ago but it didn’t show anything like gastritis. The pain happened for the first time suddenly after taking ibuprofen one time so I avoid that now. But that was strange even at the time as the GP said it was very unusual for a normal dosage to cause problems and it wouldn’t explain why it’s been ongoing. My next step with all that is to see a dietician which isn’t until July! So a bit of a wait with that one.
When I say I run it’s probably a bit misleading! I do a slow 5k, so no records being set here! I also do Pilates each week and always find I feel so refreshed after some exercise. For me personally I feel worse if I don’t. When doing Pilates i have to concentrate so hard (far from a natural) that it kind of takes my mind off it for a bit which is a welcome bit of respite. I think it would really depend on the symptoms. Maybe try going really slow/gentle and then if that feels ok build up from there? Are you still managing your football at the moment? Or is it too much right now?
As far as tingling goes I’ve think I’ve read pretty much all there is to about it and haven’t seen anywhere that it’s dangerous in anyway, so long as it’s not with chest pain or anything like that. It’s also nearly always temporary so it will pass sooner or later so keep hold of that.
For a few weeks mine was constant but now it just seems to get set off by certain movements like tipping my head forward, like when I’m cooking in the kitchen for example. Xx
Hey Charlotte,
Its good that your stomach is better than it used to be also good that the endoscopy didn’t show anything too.
Ibuprofen can cause tummy upset I think. I can’t take it and because I have Asthma too always been advised not too. A dietician may help. I can’t eat dairy anymore as it makes my tummy really bad. I sometimes have it but in really small doses and I gave up milk ages ago. So basically I hardly have any calcium so wondered if that contribute towards some of my symptoms? Maybe certain foods aggravate your stomach?
Hey. a run is a run! So that’s still good and great that you do Pilates too. I have never tried that is it better than yoga? I do like yoga am not the most flexible though! It’s goos that it takes your mind off stuff.
i am going to start trying to exercise then. Do you think that’s a good shout? I played Footie the other day. It was a match (15 mins each way) we we had rolling subs. But, my feet were sort of already tingling before I played. But, it was freezing. I did run quite a bit I hadnt played in a while mind but is it a good sign I could run? My feet tingled for a week after.
So there may be some respite from this tingling? That last comment I’ll as made me feel a bit better. When it comes on it feels overwhelming as normally if you get pins and needles you move your arm and it goes. The thing is not exercising can’t be good either as muscles will get weaker and there will be less tone.
i hope you have had a good day today. Xxx
Hi,
I’ve only ever tried yoga at home with DVDs and didn’t get on too well with it, I think I lack the patience! That’s great you managed football the other day. I can imagine it’s quite an intense workout so if you’re worried maybe try something lower impact for now and see if that helps with the symptoms afterwards? I really don’t think you’ll be doing yourself any harm though even if it does set off the tingling. I’m sure the consequences of not doing exercise would be worse for overall health like you say.
It’s interesting you don’t eat dairy. Vitamin D deficiency can cause neurological symptoms so you may be lucky and it could be as simple as taking a supplement in your case. Wouldn’t that be amazing?! Maybe speak to a pharmacist as they’ll be able to advise on the best one - I’m no expert but I know not all supplements are created equal so would be worth getting whatever they recommend.
when will you get your blood test results? X
Hey,
I really like yoga it’s good but have to find the right ones. I watch it on you tube sometimes it’s a bit hard to get in the zone. Is Pilates better than yoga as I have always wanted to give that a try!
do you try and run most days? I have been trying different exercises on my legs for a few days. I have been balancing on one leg and doing jumps on the stairs just to see how my legs respond. Also been doing short runs with my dog. But my weaker leg is just aching. You know a bit like when you have done too much exercise only I haven’t!
I eat hardly any dairy I cut it out like 5 months ago as when I was having it my stomach bloated. That would be so amazing if it was just a deficiency but I just keep thinking it’s more than that. Especially with the tingling and the weaker leg. I even thought about trying the gym and just lifting weights on it. But, then I had a better thought I spoke to one of my mates and she said I should contact my chiro again he is really good. He said about my leg a while back but he did a manipulation and it was okay again. I thought maybe he could assess my leg strength and see what it’s like.
How have you been feeling? How are your eyes and have you been using those drops? Not long until your MRI so hopefully you will know more. How has your breathing been in the cold weather?
I should get them back next week. It’s the not knowing that’s scary isn’t it? I keep overthinking! I haven’t been to Cardio tennis in ages and my legs felt weird then. But I thought it was because I was tired and hadn’t eaten enough.
Do you find it hard to regulate your body temp? Also do you get a really dry mouth? I get sooooo thirsty in the night and in the day I reckon I must drink about 6 pints of squash a day and then one through the night too.
Sorry for the essay xx
Hi. I haver never had any major problems with my eyes except from dry eyes and a bit of itching. It took 7 yrs for me to be diagnosed. It takes so long to be diagnosed because a lot of other things have to be eliminated first! The diagnosis is definatley a relief. You finally understand what causes all those weird symptoms. I have never had tingling in my face but i do get neuralgia. The tingling is in my hands and feet. I go for walks everyday with my dog I think this definatley helps even though it can be hard to do sometimes. I get so many of the symptoms that everyone has already talked about.
Hi Sarah, it`s ok re asking questions…I was like you back last century!
A heavy leg isnt quite the same as drop foot…because you could still lift your foot. There are things which can help a dropped foot…orthotics they are called…needs a referral from GP to access them. I tried buying a gadget off ebay, but it didnt help at all. Best get professional advice.
Playing sports will depend how this does or doesnt affect you.
It doesnt always take years to get a diagnosis…depends what your MRI and LP show.
I wouldnt automatically think tingling in the face is dangerous per se…but it needs checking out by a GP…it may be a sign of something else.
Bouds x
Hey Bouds,
Thanks for the reply xx
This is literally stressing me out so much. My whole face and lips are tingling today and my legs a bit too. I have to wait for my bloods to come back now agonising wait, I am also mega lightheaded today. You know when you feel like you are not in the room?
dk you think having all these symptoms sounds similar to MS. My leg just feels weak on one side,
just really worried as I don’t know what is it and I can’t even take any meds to help xx
with an MRI do you know how much that is privately as an just going to pay for it I think. Or is it likely that I will need loads of tests xx
Hey,
Hope you’ve been ok today.
I can’t really compare yoga to Pilates much as never stuck with yoga long enough. I just found all the breathing wasn’t for me and Pilates feels more like exercise, but just my opinion, many of my friends love yoga so think it’s just personal preference. They’re both great for health so either one a great thing to do.
I try to run twice a week but recently it’s been more like once if I’m honest. Just been crazy busy and with all this going on sometimes I really just don’t feel like it. Need to get back in the habit!
That’s good you’ve tried some different exercise as at least it’ll be giving you a better picture of what’s going on with your leg, like if certain movements aggravate it etc. I think it’d be good to see your chiro again too as they should be able to hopefully put your mind at ease and give you some answers. It’s all just so worrying isn’t it?!
my breathing is fine now, that symptom’s gone but my eyes are still bad and the drops have literally done nothing (no surprises there!) I knew it wasn’t just dry eyes. So annoying when they don’t listen/believe you! I’ll keep going with them as don’t suppose they can do any harm. So frustrating though.
I’m getting more anxious as the MRI gets closer. Part of me thinks maybe ignorance is bliss. I’m convinced it’s MS as I have no idea what else it could realistically be but nevertheless not sure I’m really ready to be told that in black and white.
Haven’t had any changes with thirst but before Xmas had a week or so when the symptoms started of being absolutely freezing, I was wearing leggings, socks and a jumper in bed! Like I was cold right to my bones. I remember one day at work contemplating whether or not I could ask to go home because I was too cold! Managed to refrain from that though!
I do wonder with your symptoms whether it could all be a diet thing. The fact you’ve had stomach issues, are intolerant to dairy and now the thirst does seem to point in that direction. So without meaning to take on the role of a dr I think you can be very hopeful that it’s something simple like that. I really hope so for you. Xx
Me again! I just looked back at your first message and something else sprung to mind. A friend of a friend had lots of hair fall out and it was getting really thin and breaking easily. She was a vegan at the time (I don’t know anything else about her diet like whether she was careful to get enough protein etc) but her GP said just eat a normal diet and it should start growing back…and it did. Just thought I’d mention in case it seemed relevant to you. Try not to worry too much, easier said than done I know!
Sarah…sweetheart…you gotta chill a bit …all this is getting to you too much…that could be causing extra symptoms…stress can do all kinds of stuff…so be careful. Maybe stop reading so much about the whole subject. I know when I overthink, I can feel light headed…dizzy…it`s too much thinking.
Having an MRI priivately used to cost around £600 - £800…so hold back on that. Having an MRI right now isnt going to change whats affected you already. Unless you have private medical insurance, dont go spending so much on something that isnt that urgent.
Dont mean to upset you Sarah…just trying to calm you a bit. Been where you are and understand completely.
Boudsxx
Hey Bouds,
It’s okay, I get what you mean. It all just seems so stressful. My pins and needles are back again and now both of my legs few weak. So when I get the symptoms back it causes me to panic again.
Just so scared. I feel exhausted just walking and really want to play some sport but just don’t feel up to it.
I have my appointment coming up in June now. I guess it’s always the fear of the unknown. If I lie in a certain position I get pins and needles so maybe it’s a nerve wishful thinking!
I just want this pain to stop with my pins and needles and for my legs to be strong again. Will exercising like cycling help a bit to try and strengthen them?
So worried all of the time and I don’t know how to distract myself. Scared I won’t be able to do things I used to.
Sorry for the essay x
Hi Sarah and Charl, youre both welcome. If my own experiences can help anyone, then thats good.
Take care both.
love Boudsx