Numb thigh :(

[Papillon1kk1]

Hello all, I'm here to find people who make choices other than treatment to cope with their MS... I've been symptom free for a decade since my diagnosis. But 4 days ago, i felt the front of my thigh go numb. Scared :/

[lbenmaor]

I understand why you're scared. You should call your Dr.

Leslie

[Papillon1kk1 in reply to lbenmaor]

Thanks Leslie, i don't have any particular doctor anymore but maybe I'll try if I have the guts to do it

[Helpmeup]

Hi Papillon1kk1. Welcome to our group. M.S. is very unpredictable. Ten years with no symptoms or relapses is a good thing. If your new leg numbness symptom lasts more than a day or two, it's a good idea to let your neurologist know. Fear is completely understandable. As far as going on a disease modifying therapy, it is a difficult choice that we each have to make. Many go on therapy forever, some stop after a period of time, some never start. M.S. is so different in each person, and we all have to choose what we feel is best for us. Having a good Neurologist to work with to give you advice and guidance and monitor your disease is so important. Take care. 😊

[Papillon1kk1 in reply to Helpmeup]

Thank you so much for your response. I think I've been stupid and let go of my precautions that's why my body's warning me. Numbness was my first symptom and it was in my hands and feet and spread eventually. This time, I'm on top of it and it's on one thigh. I am dying to know that someone on here has dealt with numbness that comes and goes. Because I believe I'm okay otherwise, I just want to know that I can sit this out ..

[starlight5 in reply to Papillon1kk1]

I think most pwms have had numbness that comes and goes. You say you believe you are okay otherwise and want to know if you can sit this out... No one can answer that. Without an mri you have no way of knowing if new lesions are the cause. Even if you do have new lesions, you do not have to take steroids which may only shorten the duration of symptoms and come with a host of possible side effects.

I also agree with you that the recent stress and poor food choices you mentioned can cause inflammation which can exacerbate symptoms....

Perhaps it is time to look for a new neuro. All decisions regarding dmt and steroids are still yours to make, but you would be making them armed with recent information, not guesswork.

[Papillon1kk1 in reply to starlight5]

Hi... Thank you for your response. I've had a heavy few hours after I got back to one of my older Neurologists who happened to remember me (probably because I was so hell bent on not getting on treatment when I met her in 2016, 3 years post diagnosis). The call was positive in so much that she told me that I need to get an MRI done ASAP. But it's got me shaken up because I haven't had an MRI after 2016 and I'm quite terrified of what might come out. However, given that I've been okay and have lived my best life like a normal person since 2016, I'm hoping it's not too bad.

I would only be keen on steroids given that the last time I took them, they suppressed the inflammation and did the job... My feeling slowly returned. I'm not sure if that was the cause though... Anyhow.. if the doctors tell me to wait it out and not take steroids, I'm okay with that too... To get on DMT just isn't something I see myself doing.. God is kind, and I understand I'm among the very few, the minority that says things like this. But i believe I can heal my body by understanding my triggers.

Guess it's just a crossroads.

I'm to be married soon.. my partner is in the UK and he's being so gentle about it, so loving and patient too. I'm blessed, I'm loved, But I'm scared. And of what? For what? I don't know....

[starlight5 in reply to Papillon1kk1]

Congratulations on your upcoming wedding!🎉 Enjoy your special day and try not to let yourself stress over the little things. My mother always said everything happens for a reason, it just may not be for us to know why or what that reason is. Blessings to you and your partner💕

[CatsandCars]

I'm sorry to hear that you're having new, scary symptoms. It's up to you if you want to use medication to treat your MS or not. There are people who are lucky and have no real disability from MS. My sister in law is one of them, but the lucky ones probably only represent 10% of overall MS patients, according to a neurologist at Bart's in London. You should see a doctor and hopefully get some MRIs to find out what's going on, then take it from there. I wish you the best. ❤️

[Papillon1kk1 in reply to CatsandCars]

Thank you for your reply.. i went through a few MRIs in 2013, and then in 2016 and finally in 2018 I decided I was done and wasn't going to go back to the doctor to hear the same thing. I'm desperate though so maybe I will look for a neurologist. I want to know that I'll be okay without corticosteroids. My precious symptoms took their own sweet time disappearing despite the corticosteroids. I'm besides myself with grief. I've been a little stupid with my health and left all care to the wind and maybe I'm paying for it now.

[Papillon1kk1 in reply to CatsandCars]

Also happy to know your sister in law is doing okay without treatment. That's been me so far. And I hope to God it'll be me going ahead.

[CatsandCars in reply to Papillon1kk1]

Yes, she is. Although she is definitely in the minority. And she is married to a neurologist, so she was carefully monitored. Also, when she was diagnosed there weren't any DMTs in existence. By the time those came out, she'd had MS a long time and was doing well, so she never took any. I think that the monitoring part is really important. Had she had new lesions, I'm sure she would have gone on a DMT once they became available. And her sister also had MS, and she was not as lucky.

[Papillon1kk1 in reply to CatsandCars]

Sometimes I really wonder if it all comes down to stress and triggers... It's been a major thing, at least for me. I've had some stress in my life of late and It all clicks together.. sigh. Both sisters have MS? Thats a terribly mystery.. what a strange unpredictable disease. There's literally no history of neurodegenerative disease in my family.. Scares me about the babies I want to make some day.

[bookish]

Hi, I just wondered what your diet was like, any other medications that you might take etc - Vit B12 deficiency neuropathy is not always length-dependent and can be non-length-dependent, testing is often poor and can be misleading. B12 metabolism issues have links to MS and occasionally they are confused at diagnosis. I think it would be worth making sure that a B12 or folate issue (they work closely together) is not exacerbating your problem. Serum testing is a good place to start but cannot rule out a deficiency, which can occur at any serum level. Best wishes

[Papillon1kk1 in reply to bookish]

Hi, so I think what I've done is I've messed up with my diet and lifestyle. I got carried away and went on a carefree meat-eating holiday with my boyfriend. He's from the UK, I'm indian. I wasn't keeping a watch on my diet and post that I neglected conscious veggie intake more (the last 6 months) and I was drinking as if I was never diagnosed (terrible idea). I think I'm paying for it.

I started a new job and there's been stress there, and with my parents. I let it all get to me nad here I am, no other issues, just a thigh thtas randomly decided to go numb. I'm not sure if they do serum tests in India.. maybe they do. I just loathe the idea of going to a doctor again and being told to get on disease modifying drugs. They scare you to death here. I'm on vitamin B12 again. I'm eating fruits and veggies and lentils everyday. I've cut out sugar, alcohol, bread, rice, wheat.

And I've gotten back to my yoga. I think I was fine all these years because I'm a trained classical dancer. I stopped with that a year ago, what with all this money making business and chasing s career. I feel so stupid.

[bookish in reply to Papillon1kk1]

Please don't feel stupid. You are doing your best to live a life in difficult circumstances. The meat-eating might even have helped, if you are able to absorb the B12! But the lack of veg not so good and stress can be tricky. Brilliant that you have made some changes and are back to the yoga, but don't beat yourself up. What B12 do you use and how long on/off? Not much point testing if you are on high dose, but oral may not be enough, I had to have injections. Magnesium might be helpful. Numbness can improve or vanish if you get the right treatment for the cause of the problem. Mine is changing but the cause most likely was gluten and lack of B12/folate (not MS) so would be reversible if caught early. Best wishes

[starlight5 in reply to Papillon1kk1]

A healthy diet and lifestyle, managing stress are all great and perhaps helped keep symptoms at bay, but many can tell you it is not enough. Without an MRI the last 6 years, you have no way of knowing if lesions were accumulating. The decision whether to take a DMT will always be yours but perhaps it is time for another MRI to see if there are any changes since your last in 2O18, and unfortunately progression can happen without MRI changes.

I myself went over 2O years with only a few episodes of minor symptoms that went undiagnosed, then seemingly out of nowhere, spms set in with a vengeance, an array of symptoms that remained and steadily worsened. Ocrevus seems to have slowed progression somewhat. Best wishes to you.

[CatsandCars]

It's wonderful that you took such care with diet and exercise. It definitely takes part of the burden off your body. But diet and exercise can't prevent MS progression, unfortunately. You aren't stupid. There's nothing wrong with pursuing a career with MS if you are able!

[Papillon1kk1 in reply to CatsandCars]

Thank you, I tend to need that encouragement. I worked very hard to keep all at bay, and as time goes forward one tends to get laid-back. I'll be back on my A-game. The last neurologist i ever spoke to when I almost gave up and went on disease modifying drugs told me that if I'd been okay for so long... The odds were that I'd do okay but well he did ask me not to hold him to it.I'm a psychotherapist by the way 😂

I love my work. And I hope to be able to do it a long long time. We all need gentle, listening ears and a little analysis never hurts!

[CatsandCars in reply to Papillon1kk1]

MS is such an insidious disease. I know that DMTs are very scary, especially because you take them in the now. Whereas progression is something happens later. But many people take DMTs without a problem, or change to a different one if they have side effects. The risk of serious adverse events is real, I get that, but it's a low risk. The risk of progression is pretty high. The sensation in your thigh will probably go away, which is the nature of MS. But it doesn't mean everything is good. If you want to have a long career, and be healthy enough to raise children someday, I hope that you will, at the very least, get a yearly exam and MRI. You can't make good decisions without the right information. I hope that you'll feel comfortable coming back to this forum if you ever have any questions or concerns. Good luck.

[Humbrd]

I get that too with my thigh becoming numb. Happens every once in a while for years. The side of my face too. It used to scare me, but now I know it will go away.

[Papillon1kk1 in reply to Humbrd]

Yep... I can't use my left hand or left foot effectively now so definitely getting an Mri... Steroids for 5 days but.... I am not going in for DMT simply because I never have and it's a choice... Quality of life over quantity as someone of the same choice reminded me this morning. Besides, it's so expensive. No one's paying for me haha. In India, insurance companies don't really cover MS. to be on the safer side I will obviously enquire more (I'm currently covered under my dad's military health scheme. He's a retired officer. Cover for life for mum and dad, I am so happy for them. For me, as a daughter, I'm eligible for cover up till the time I'm married.. and soon... I will be.Wonder what my partner I decide about the wedding now... We wanted to do it by end of next year. Oh well.

Here I go... Step by step.

Thanks for your message. To know that it does go away is something that eases my mind. 🙏❤️

[Papillon1kk1 in reply to Papillon1kk1]

Wishing you health,strength and love!

[Humbrd in reply to Papillon1kk1]

That's right, step by step or day by day. We can only do our best. Best wishes for your upcoming wedding next year.

Sorry to hear in your country medications for Ms are not covered. That's not good. Lucky you can be covered under your parents. And then I suppose under your husband after that.