@mrspoffy

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mrspoffy

Daily Symptoms :/

Hey guys. I'm coming up on the worst first anniversary of my life, the day i was diagnosed with RRMS. Feb 16 and I currently take Gilenya daily along with a host of other meds for different things but the reason I'm here, is since the relapse that initially got me diagnosed last year, I've had pain, burning, and sometimes numbness in my legs. I've had 3 relapses in a year if you can call them "re"lapses. I've had active lesions for almost a year, up until November. The one very large lesion showed improvement and no new lesions. My left leg HURTS constantly all the way up into my hip. It makes it difficult to walk. I've spoken to my neuro about it, but his response is that because I don't have active lesions, so the damage is likely permanent. This is difficult to hear, because I have 2 kids, one 5 year old girl and a 13 month old boy. :'( I can't help but feel dread and doubt when I look into the future. There were talks in October of switching me to Tysabri from Gilenya but since that MRI showed some improvement, they opted against it. I honestly don't really know that I'm asking anything at all, just needed to vent I suppose.

Stumbler

@Stumbler

@mrspoffy , Unfortunately, there are a lot of us that have to manage "residual damage" from relapses, caused by the remission not being complete. Burning, numbness, pins &needles are all types of sensory pain that we try and manage with specific medications. If your left leg is physically hurting, then this may have been caused by you naturally compensating for another weakness, putting unnatural strain on another joint. It might be worthwhile consulting a Neuro-Physio to assess your posture and gait. They can suggest exercises to address any problems. As far as relapses are concerned, the following website has a good definition of what is and isn't a relapse, https://www.mssociety.org.uk/what-is-ms/types-of-ms/relapsing-remitting-rrms . This may question whether you did have three relapses in a year. Our MS symptoms can be suddenly noticeable for a variety of reasons, e.g. being over-tired, fighting a normal infection etc. Use this as a warning to check for infections and/or rest up a bit. Not easy with a young family, but you need to schedule in a break for yourself too, possibly when your young one has a nap. Try not to worry too much about the future. No-one knows what the future holds, so don't start spending al your time worrying about things that may never happen. Enjoy the present. :wink:

MsHackney

@MsHackney

Can you try to get referral to a neuro physio? I saw one in the summer and they have really changed the pain I was in. Worth a go? Your ms nurse or GP should be able to refer you. Seriously I went from being in constant pain to now running in not really any pain.

jennifer76

@jennifer76

Hi. I can highly recommend Tysabri. if you can get it go for it. Unfortunately i am JC positive so could only stay on it for 2 years. I am now on G. I wish i could go back to T. To me its the drug to end all drugs. ????

salinawee

@salinawee

Hi Mrspoffy, did your walking & imbalance got better once you start on Gilenya and how long did it take to see the improvement? Reason I'm asking is because I've had MS for almost 5 years with no medication because I refused to believe medication can help. Unfortunately my condition is getting worse and I am having the worst symptoms that one can have, particularly walking. My legs are a lot weaker now and my neurologist insisted that I should start on the meds asap before it gets worse. I won't do needles so he suggested that I try with Gilenya. So I hope you and others here would be able to share your experience with me before I take the plunge. Thanks in advance all.

salinawee

@salinawee

Hi Orlando27, thanks for the advice! I've not heard of Lemtrada and I am going to find out more about it. I'm not sure if the drug is approved here in Asia but I will bring this up with my neurologist the next time I see him :) Thank you for your invaluable advice.

Monica2015

@Monica2015

Hi @salinawee, I've also taken lemtrada, early days but the science behind it is impressive. Would recommend you investigate and research further. Hi @orlando27, how are things?

salinawee

@salinawee

@monica2015 thank you for sharing. I'm more determined to find out about it :)

Monica2015

@Monica2015

@orlando27, glad I've managed to locate this thread again and respond! It's heartening to hear you are stable, I hope that is indicative of internal improvements. I've had the usual ups and downs esp with the spasms, so I'll refrain from commenting too much. Well done on your tireless crusade to spread the word, no matter how futile at times it appears to be, I'm certain that being educated as to its benefits will slowly take effect!

Monica2015

@Monica2015

@orlando27, I know only too well... How are you feeling now? Are you stable or improving would you say?

Monica2015

@Monica2015

@george1234, how kind of you to ask and reconnect! How are you? I'm ok thank you, my stock answer. Usual little dramas with symptoms but you know the drill well enough. May I ask if you have ever considered meds? How are you feeling day to day? Xxx

cameron

@cameron

@mrsspoffy - all I can add to @Stumbler's wisdom is that I have discovered over the years how the MS is affected by how you live your life. My neuro told me that once I'd retired, my MS might improve. I really didn't believe him. Leg pain, tingling etc. - how could that change except for the worse?? I was wrong. Friends tell me that I am better now than when first dxd (2003). Trying to analyse how and why I got improvements is something I do frequently. I guess the biggest factor is removal of stress. As many have said before me, you don't realise what stress you carry until someone takes it away. Instead of anxiety about work, I focus on me and my health. You could ask yourself: how much 'me time' do you give yourself? Probably very little. How many demands are made of you? Multiple, I'm sure. Now you may not be in a position to relax more etc at the moment, but at least stop thinking that the MS is an inexorable downward spiral. Factor no. 2 for me has been increased aerobic exercise. Its benefits have been huge for me. Greater musculo-skeletal strength has improved my balance and my gait. Fitness didn't come easily but it has been well worth it. Having these as goals and doing what you can when you can would be a positive step. Best wishes xx

Monica2015

@Monica2015

Hi george1234, I think you and cherish are the real lovers on this site, simply a dalliance with me! Re your health, I would concur with Orlando27, re Lemtrada for you. Unless it really would be fatal although I seriously struggle to see how. Both he and I were in a serious state of decline, he even worse than I from all accounts. I was relapsing continually in addition to a steep decline, so do think it may be beneficial for you. He does appear to be making inroads towards recovery, and myself too I guess, albeit with peaks and troughs. Is it something you could discuss with your Neuro as to whether potentially useful or simply disinterested? M Xxx

Monica2015

@Monica2015

Good for you @cameron, I'm abysmal at controlling my stress levels which are commonly a direct cause of my relapses. So congratulations on managing all so well! Xx

Monica2015

@Monica2015

@orlando27, had one definite relapse post Lem involving zero mobility and the prelude to ON last week, but managed to stop it from progressing to a full blown attack thankfully. Feel spasms not improved and indeed worsened. On meds for them, unhappy about how they cannot be reduced at all... However, generally feeling better overall I would say considering how horrendous I was becoming.so hopeful just as you are!

Monica2015

@Monica2015

I know Georgie! Just kidding of course, as didn't think the wife would appreciate unless it was a threesome... I'm certain that costs may play a part in his comments! I've spoken and indeed met with a girl who was w/c bound who has benefitted from it. Do feel we should all have the opportunity to attempt a treatment, should we choose to do so. A damn sight cheaper than ongoing care etc...!

Monica2015

@Monica2015

Good luck Georgie xxx

Monica2015

@Monica2015

@orlando27, thank you. I take the pregablin 75mg twice that you thankfully suggested, plus half of 10mg baclofen plus diazapam 5 mg if things particularly severe... So seriously unhappy about the level of meds I'm taking about the mo, unheard of for me!! P.S thanks for the congrats, but @George1234 and I just engage in banter, and share a love of interesting quotes from my favourite ever author Oscar Wilde! I was referring to he and Lisa (@cherish) re the threesome, but again it's just banter and all in jest. We all know deep belly ache laughter or intellectual stimulation (or even better BOTH!) is good for the soul. Georgie is a witty guy and I come from a family of 3 brothers and parents who were super sharp and witty, so it's much appreciated!

Monica2015

@Monica2015

@george1234, was referring you, Lisa and the wife!!? Your poor long suffering lady must have a hard time with you! My husband certainly complains that I'm too much for him! No innuendo now Georgie, you know how we talked about this...

Shortie

@Shortie

This is really a great source of information.

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How are everyone eyes? I keep getting blurred vision and vertigo. Please tell me what you did to sort any eye problems out