Progress Update: Still Getting Worse…

It seems like I have been getting steadily worse for a while now but at this point it’s starting to dip into the “effecting my functionality” zone… My left side is getting so much weaker… I remember waking up in the middle of the night the other night and I could hardly lift my arm as the weight of my blanket was just “too much”… My left leg was so weak the other day at the store that it was starting to shake just because I was standing on it. I am noticing today that my right leg is getting a little shaky as well which scares me… I don’t want to be back in a wheel chair… I don’t know what I’ll do with myself if I loose the ability to walk again…

Noticing a lot more pins and needles in my left hand, not as bad as it once was but enough that I actually notice it… My Lhermites Sign has popped up here and there as well but very faintly… After a few of my recent walks I have gotten pins and needles in my legs for a while before it dissipated. I can’t say I am going numb on the right side of my body but I can say that I am having trouble identifying temperature as quickly as I should be able to… Cold still hurts really bad but now I am noticing that I can endure hot water on my right side much longer then on my left side so I have to be even MORE careful in the shower now… Can’t be too hot and can’t be too cold… I hate it!

Vision has not changed too much, still not great but not the worst which goes for my depth perception as well. Oh yeah, balance… Probably the most effected symptoms so far… This is upsetting me above all else… As soon as I stop focusing on my balance I loose it. I turn around to quick and I find myself leaning into the wall or falling back onto the couch… I feel like I am in my 90’s… That goes for my cognitive function as well… My memory is also getting worse and my ability to concentrate is going out the window as well… MIght have to look into Adderall or something…

All this is making me pretty depressed despite my efforts to remain positive. My depression then aids my fatigue in killing my motivation which in turn deepens my depression… A vicious cycle… Especially considering fatigue can cause depresseion and depression can cause fatigue… I am not sure how to brake the cycle just yet… I was however sent an article about MS fatigue and I found it very interesting.

You can VIEW IT HERE on Page 7

Today I woke up with a horrible headache… HORRIBLE. Here is my problem… I have almost never been able to sleep more then 7 or 8 hours without waking up with a headache… Before I was diagnosed with MS I was seeing my doctor about chronic headaches and was on a medication called “Epidrin” which worked REALLY well if you didn’t have to go to work, school, or do ANYTHING besides sit on the couch. For a while my headaches went away, not sure if it was the Prednisone or some other medication I was put on after the MS, but it was great while it lasted. Now my headaches are coming back… I have been trying my best to keep myself up late so that I don’t oversleep but it’s been so hard with the fatigue.

So my plan is this: I am going to try taking my Prednisone more towards the afternoon because typically Prednisone keeps you wired, it gives you energy, so if I take it late in the day maybe it will keep me up just long enough to let me fall asleep at a time that will allow me to wake up around 8 without getting a headache. Not sure how likely this is to work but I figure it’s worth a try! After being on Prednisone for almost a year it has pretty much stopped benefiting me and seems to be providing me with more side effects then help so I’m not so sure it will even give me ANY energy at this point… Guess I’ll find out tonight.

I am going to try to get an appointment with my new primary care doctor… My neurologist still ha snot emailed me back… Not surprised… I am also going to try to set up an appointment with any neurologist available at Loma Lind awhile my referral is still good. I’m sure even if they don’t specialize in MS they will at least specialize in actually helping  people unlike my previous neurologists. Hopefully I can get everything under control soon because I’m obviously not getting better….

5 thoughts on “Progress Update: Still Getting Worse…

  • May 20, 2011 at 10:47 am

    As a fellow RRMSer, I understand concerns such as am I becoming Secondary Progressive? Am I having a relapse? Why am I not getting back to how I was before my last relapse?

    I am not sure we can always get answers to these questions.

    We have to live with what MS throws at us each day and overcome each hurdle however we can.

    I hope you rise above the depression and fatigue, both of which I have endured and, in the case of depression, hopefully conquered.

    PS I apologise if you get this comment more than once, I am having technology issues!

  • May 20, 2011 at 1:55 pm

    Hshs well it's like I said in another article, there really is only one kind of MS if you ask me, and that's the kind that SUCKS! So your right, just have to take it one day at a time!

  • May 20, 2011 at 6:50 pm

    Same here – I have somewhat different symptoms, obviously, but I'm forever getting worse and feeling pretty helpless. But there's not much we can do, right? Just gotta work with what we have… :/

  • May 20, 2011 at 7:30 pm

    For Now** For now we just gotta' work with it but I don't think that will always be the case. All good things to those who wait.


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