@Lozwo

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Lozwo

Numbness

Hi all ! Just sitting on the couch tonight I realised most of my leg was pretty much numb when I was touching it. It's been like it for some time but I suppose I'm so used to sensory issues it never really concerned me. Just wanting to know if most of us live with numb areas of our bodies like it's the norm ? Interested to know!

Stumbler

@Stumbler

Hi @lozwo and happy new year. Unfortunately, we can get left with sensory problems as residual damage when relapses don't heal fully. These problems can also be a warning sign if we're over-doing it too. If these sensory issues are causing you a problem, there are medications available to minimise their impact.

Fi1909

@Fi1909

Happy New Year. For me it is my right hand - keeps coming and going after a recent relapse. I am right handed so can be entertaining at times ! I also get it originally in the toes on my right foot . I find it so frustrating at times. Fi X

Monica2015

@Monica2015

Hi @lozwo, on each of my 70 rele

Monica2015

@Monica2015

Each of my 70 relapses commence with increased bladder urgency, thereafter followed by numbness of usually my lower extremities, followed swiftly by heaviness and then anything else that might rear its ugly hear, inc Optic neuritis, ms hug, l'Hermittes sign, blindness in one eye, patalud

Monica2015

@Monica2015

Oops, fingers v cold and pressed "submit" early.. Paralysis,vertigo, tinnitus etc., immobility etc.. However, generally at some point they dissipate and the issues/feelings return to normal, albeit for too short a period of time prior to the next episode. Until this year, but that's another tale. I do think numbness is very common indeed.

Monica2015

@Monica2015

Hi @orlando27, you appear to be correct! Since Sunday , upon my return from my holidays, I too experienced horrific, violent spasms and acute, excuciating back ache, all over my body, primarily back and legs, at night time. I've discussed with my GP( doctor), ms nurse and chemist. I've finally succumbed to your suggestion of the "hard core" drug of baclofen (started yesterday), along with diazepam (as advised by chemist!). However, they are having no impact. Last night was horrendous regardless. Coincidentally, I requested today results for a lower back MRI undertaken on Xmas eve. Apparently, I have "deterioration at L4/5 and L5/F1 with annulus fibrous tears". However, today, I've also experienced numb legs, increased urinary frequency (if that could be possible!), plus episodes of dizziness and loss of balance. I am praying it's not a full blown relapse, but my mobility is now extremely limited due to the back ache and heavy lower limbs. . I did stop taking vesi care on Sunday after our discussion, having only consumed 3. I am not certain as to whether it is a back issue or a relapse, but the pain, stiffness, numbness, horrendous spasms appear to point to the latter... Any thoughts?

Monica2015

@Monica2015

Hi @orlando27, thank you. Well, I'm extremely disappointed that I'm now on so many drugs, when prior to lemtrada, I rarely took anything! Currently, I possess at home the choice of Gabapentin, diazepam, clonezepam, pregablin, baclofen and vesicare. All the professionals are contradicting themselves as to what might be appropriate for my current situation, hence my request for your views. Last night I attempted the baclofen (half a 10mg tab, having taken 2 x half during the day), 1 x 5 mg diazepam upon first violent spasm and then another upon the next. However, did not take any more obviously given the high dosage already. The rest I just took herbal meds for. Is lyrica another name for pregablin, as I have not attempted that again after my first attempt, although it did work I think previously. I really detest taking all these meds, and am still uncertain that I'm taking the most appropriate ones in any event. Do any of them act as an actual anti inflammatory in your opinion, as that would seem most sensible an option given that I am taking them in any event? I received 4 doses of steroids last year (having taken only one in the preceding 10 years when first dx), so steroids are not a viable option to stop this in its tracks. However, it is what it is. I suppose I was expecting the relapses would stop post lemtrada, but it was wishful thinking on my part. I'm sure, that I will hopefully recover quicker than usual. I will employ my usual post relapse strategies and hope for the best. Are you still consistently well? Do you estimate that this happened at 17 weeks for you?

Monica2015

@Monica2015

@orlando27, I have all of these drugs as my GP has been at one point or another prescribed all of them as he simply does not know which might work best for me. Previously, pre Lemtrada, I took half of a 500 mg Clonezepam tablet very occasionally if the spasms were very difficult to handle at night. The rest was herbal. I did not take any other meds for pain, spasticity, burning, heaviness or numbness. Post Lem, after the spasms went through the roof, I was advised by my Neuro to take Epilem (anti epilepsy) med. I was reluctant to do so, but he asked me to. I took 2 doses only before I decided they were too strong for me. I was then prescribed diazepam 5mg X 2 by my GP which my chemist recommended I actually take regularly to calm my over reactive nervous system down. I still took them extremely rarely and sporadically. After Lem, when the spasms went into overdrive, differing opinions were given , my GP again recommended diazepam, then another colleague dantrine, another pregabalin, and ms nurse gabapebtin. I have them all but only taken preg and gabapebtin once or twice each, before discarding as having had no impact. I'm guessing I was too rash and expecting too much. The last few days, when I appear to be having a relapse, my GP this time suggested gabapebtin but advised me it took time to build up in my system. Instead, I decided to request baclofen upon your recommendation, which he duly prescribed ( they know how much of a control freak I am and that I could be trusted with this vast array of drugs). It was the chemist who recommended bac plus the Diaz if I was woken by a sudden spasm (up to twice per night). I advised my GP who concurred. I cannot see my Neuro until April, despite requests for my appointment to be brought forward. I'm just rather concerned to be on these "hard core" drugs. Thus far, other than the one preg tablet, I've had no SEs despite being predisposed to over sensitivity. I understand re the herbal meds, but they have helped me significantly when I did not use any allopathic meds. So that is what I'm currently taking: 3 X half 10 mg baclofen and 5mg Diaz if and when required. My symptoms are severe, violent nightly spasms, pain, numbness, heaviness and excruciating back ache. I'm hoping that the 2 meds I'm taking cover these? I'm not taking any of the other meds languishing in my med cabinet. My GP advised I take pain meds in addition but I'm hoping that the above will suffice. I'm reluctant to take even more meds.

Monica2015

@Monica2015

Thank you and best wishes to you, ?

Monica2015

@Monica2015

Thank you. Just to clarify, despite all the choices given, I'm only taking baclofen as you suggested tog with Diaz as and when required... Re anti inflammatories, I think I'll take natural supplements instead..

Monica2015

@Monica2015

Thank you for your wishes, I'm sure I will too. This is a temporary, albeit frustrating blip...I was just somewhat unprepared for it!

Monica2015

@Monica2015

@orlando27, thank you. I've been through this and significantly worse, but just without the meds, so in itself not a "big deal". Just rather out of my depth now that taking meds, with all their SEs... Re preg, I was prescribed 75mg x 2 per day. I recall you saying that was inordinately high! As previously mentioned, the SEs of being "high" were intolerable. Hence my reticence to attempt them again. What dose would you recommend and what would it's exact purpose be for pls? Why one month continuously? Are they dual purpose at all? Would it be acceptable to combine two such strong drugs together?

Bellas1

@Bellas1

I prefer the type of numbness where I don't notice it 'till something brings it to my attention, to the type where I feel like fingers, toes or whatever feel like they are swollen up like a bunch of sausages when of course they look perfectly normal.

Monica2015

@Monica2015

Thank you @orlando27, I may try one half of the 75mg as that's all I have, and really cannot handle the feeling to which you refer and I experienced. Especially, as I'm already taking such a strong drug in baclofen 1/3 X 3 of the lowest dose. Will reassess thereafter.

Sonia1984

@Sonia1984

@Lozwo I am like you and probably many others when it comes to sensory issues, we tend to dismiss them. Everyone is sick with some sort of cold in my house right now and I get hit with a lack of feeling from the ankle down on my left side. Unless I physically look down and tell my brain my foot is still there my brain is telling me otherwise so I am trying a little mind over matter. Have to love when everyone is sick with a cold and I am over here with a numb left foot wondering when my cold symptoms might hit but maybe they already have in a what do they call it? Oh yeah a "pseudo excaberation"....

sfcrane

@sfcrane

I'm feeling annoyed at myself since I missed the time to call neuro-direct so I can't speak to a nurse until tomorrow. I took a sickie because I can't feel my bum, legs (much), ankles or feet. (ankles feel like heavy weights are wrapped round them). It's been like this for a week but I kept hoping it will go away - my favourite treatment is denial. I'm lucky that I don't get many symptoms most of the time- so I don't know if steroids would help this and/or, if I don't go on steroids, if the myelin damage will get worse. Ugh. So fed up. Just moaning, sorry. But any advice about what you've done in similar circumstances would be great. tx, Susan (UK)