@The_Dilbert 

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The_Dilbert

Dysesthesias in legs and frustration

Howdie All, Newbie here to the forum and MS. Trying to understand/cope with this situation, so hoping to "find someone like me", and try to understand how ye all deal with this, and how it impacts your lives. However re-reading it, I see its turned into a bit of a mind/emotion dump. So apologies for this lengthy post! My main symptom seems to be Dysesthesias in legs and stiff/sore hands. Dr google tells me it seems to be a common issue, tho I feel my neurologist looks at me as if I have 10 heads when I talk about it. I'm at this frustrating stage of trying to understand how I can handle this, and how its realistically going to effect my life. So I was just diagnosed at Nov of last year, with my hospital visit triggered by numbness from chest down rest of the body. Got steroid treatment as normal, but as the numbness started to fade it was replaced by this burning feeling in my feet and stiff awkward hands. My neuro thought these sympthoms would be gone in a few months, as RRMS i believe usually mean that you mostly recover from these initial flare ups. Of course over time things can get worse. However nearly 1 year on, it seems they are not going away, if anything it is changing and I presume getting worse in my feet. initially it was just burning sensation, which has now evolved to now being a mixture of burning/acid drops/ electric surges to a heavy/lethargic feeling with sometimes pain in legs too (which I understand not good when it starts moving up). We tried Gabapentin, but it didn't seem to help and are now trying Lyrica, but it doesn't seem to be helping either. So a bit scared but also trying to figure out what realistically the future probably holds for me, my family and my career. Initially I ignored this MS diagnoisis, thinking it was a longer term problem, and I just need to push through it. Surely I can ignore a bit of pain, I've a family to provide for. I don't have time for distractions like MS. A start I'm guessing alot of us did. Oh stubborness my old friend! However over time its worn me down, and the last week or two I just feel broken, and just feel like giving up. For whatever reason I'm also feel my emotions are just out of control last two weeks. Tears unwillingly coming often whenever I think of this. These emotions bubbling up I guess are just down to me not really accepting & dealing with this, and I guess we can only surpress our feelings for so long. So above is mainly my post, but below is some additional info. Partly to find others that can relate, but also for myself to try to express the situation in words. Work: The pain itself is not the main issue for me, sure I hate it, but its the effects that it has on me that really bugs me. My career is as a Software developer. A key part of my job is trying to figure out a solution, break it into parts and create the software to do it. I'm going to try to describe the issue below, in the hopes others can relate: - seems the harder I think, the more the pain flare up in response. It often feels as if the idea I'm trying to get to is just out of reach beyond that curtain of pain. and if I can just push through that curtain I can get to the idea. However the effort is tough and very exhausting. - its soooo distracting. I'm reading up on something, listening in a meeting. Suddenly realise I'm focusing on my pain or some other random thing, and have just missed the last 10 mins of the meeting, or need to re-read that section again. This seems to be happening more and more. - "getting into the Zone". The idea where I am so engrossed in my work that time/distractions loose all meaning. You are entirely focused on the issue at hand. I seem to have lost this, as I feel the pain distraction is stopping me from doing this. One of the most frustrating aspects! - often forget what I was just thinking off. have figured out a part. i'm trying to see how it would connect with next part, and by which stage I've forgotten the first part. Sure you can write things down, but that would be alot slower (and as you are writing things down, forgetting other aspects of that part) traditionally I would keep these in my head, and as I looked at the other part I could see if it needed a change to the first part. effectively iterating over & changing the solution in my mind. - hands issues mean I cann't type like I could, which slows me down and frustrates me. Obviously the issues are causing problems for work too. They need a fully functioning employee, and at this stage I feel crap going in there. I'm seriously wondering whether its time to call time on this job, but if so what will I do. how will I provide. My partner is working too, so we would survive, we would not be on the bread-line. But its so frustrating to have worked towards goals all your life and feel like they are just being snapped away from you. and there is nothing you can do about it. I want to have something I can give my kids as inheritance. family: Timing itself is also pretty bad. I've young children, with latest child being born weeks after my diagnosis. Rather than loving them as they deserve, I feel I'm constantly on edge, with anger constantly bubbling below the surface. Often I snap when I really shouldn't. I know common parenting issue, but I feel I am much more intolerant than usual. To be fair I've been an impatient person in the past, and I feel MS has simply magnified this issue. To keep a positive spin on it, I keep telling myself that MS has highlighted this issue for me to show me it needs to be addressed, and the anger/impatience is something I'm trying very hard to control/work on. ok, better stop. this is getting too emotional for me to handle. I'm sure I'm probably over-reacting or something. And they say to keep positive, but I've done that so far, but I guess some sort of floodgate inside me opened to cause the way I'm currently feeling, and to trigger actually writting a post.
@ItsMewithMS

There is a book that I would read to my daughter when she was young about how some days just wouldn't be that great. Alexander and the horrible, no good day... now it is out there animated so mommies don't even need to read it to kids ;-0 but you still should. If you haven't read it this is a link https://www.youtube.com/watch?v=h6rp0SZX7lg Basically some days suck...and then they are over and can get better. I think that treatment protocols are different in the varied countries represented here but in the US when I was having an active flare up I was put into an MRI tube ASAP. If they could see an active lesion (MRI with contrast) I would be given a massive dose of prednisone over like a 10 day protocol. The first 5 days would be given from an infusion ball so I had an IV placed in my arm and could dose it in myself. Then there was taildown pack for the last days that were just pills. My husband also got prednisone for his UC at times and he hated it and did very poorly while taking it. Sounds like others on this site had similar poor reactions to taking it. For me it was a wonder drug. My symptoms disappeared within two days, I could sleep, had no unusual reactions, etc. Do you have an active lesion they can see? have you had an MRI to check? If it is active can they help you get it shut down? Again- things are different in the regions around the world and even over time. I described what they did for me when having flare-ups in my recent trip to Mayo and they made it sound like what I had done isn't standard practice in my area anymore...not sure why as it surely helped me...at least in that moment to get through the flare. I understood that it may not have changed disease course in the long run but I just wanted the symptoms to go away NOW and the prednisone did that for me. You say that you had some steroids that seemed to help initially? They certainly can't be used long term. Now that I don't have an active lesion and have issues they say I am moving into SPMS so am being started on Ocrevus next Wednesday. At the moment I am pulled from Rebif and taking Gralise (like an extended release of Gabapentin) to help manage "nerve pain". I think it helps but am looking forward to trying Ocrevus. I am also trying to eat better and make sure I get enough sleep. From what I see the #1 and #2 things that impact flares is sleep and stress...like it is easy to manage either of them in an active flare ;-0 but do your best. Try to step back a bit and give yourself a break for your long-term health.When I know I am being snippy I try to avoid getting into situations where I will damage relationships. In my mind I just say that I should step away. That seems to help. I may make a note on a post-it to manage the situation later...and by then and with a bit more thought may have found a better approach or resolution. Good luck, trust me, we've all been there!

@Rivka

Wow, @the_dilbert, you may feel you can’t hold a thought but you did a great job verbalizing what many of us feel/hear inside our heads. I, too, have the horrid burning, tingling, numb, hot, sharp, vibrating, sensations in my legs, and those are just my latest words for trying to explain the sensations. I have no active lesions but they continue to worsen, and no, says my neuro, it’s not SPMS (yet). It’s just the old burnt out spots smoldering. In terms of helpful advice just on the legs, not on the excellent career issues, I do the following, some of which may or not, help. I eat very well, high protein low carb, no dairy or gluten, works for me, not everyone. I stretch daily. PT once a week. Walk three times a week. With a cane. Massage once a month. Acupuncture every three weeks. I tried medical hypnosis, did nothing for me, but helps many others. Hope something here helps.