We Talking Side Effects…Again

We sick people can only yearn for the day that a drug manufacturer makes and distributes a drug with good or no side effects.  Before I get into the side effects situation, lemme say that the results of the MRI done in December came back clean. One can reasonably state that Lemtrada is clinically doing what it’s supposed to – slowing the progression of the disease.  I have no additional scarring, no additional lesions on my brain or spine and I haven’t experienced any new symptoms so YEA! I’ll take that and keep it moving.  Leh we talk side effects…

when I first told you about Lemtrada, I mentioned that it could potentially cause my thyroid to overact or underact.  That just seems so stupid to me; just pick one or the other, not both! Overactive thyroid causes (among other things) weight loss and under active causes weight gain.

Disclaimer: please know that I am not making light of either situation. The weight loss/gain and everything else that comes along with each is nothing to joke about.

I just knew with my luck, my thyroid would decide to stop working and I’d gain weight.  I mean can a gal jes lose weight without actually trying??? My thyroid-stimulating hormone (TSH) levels are tested monthly as part of the routine monitoring done by the Lemtrada manufacturer. Everyone knows that a call from ur doctor’s office after a test was performed is not good news, so when my caller ID displayed the MSCA 2 weeks prior to my regular scheduled appointment, I braced myself. I didn’t know what was wrong but something had to be. Turns out that between August and November my TSH level results were erratic at best. Let’s say the normal levels are 1-4, the last test came in at 37.5! I won’t bore u with additional details but suffice it to say that the test had to be redone but the results still came back at 13.8.  High TSH levels indicate what? U guessed it – an underactive thyroid. I am in year 3 of having Lemtrada and apparently it is “normal” for this to occur in year 3. Would have been nice not to be normal but wha yuh go do?

Good news is that this is treatable and, all things considered it is probably the “best” side effect that one can ask to be exposed to. Bad news is that I have to add another pill to my regimen…steups.  More good news too is that I can continue to indulge in my poisons of choice with this new drug – u know I cleared that up right out the gate. It’s a daily pill and it’s already on order and should be on its way to me soon. As with everything I’ve dealt with over the years with this disease, I’m going to have to determine over time what dosage will work for me.  The doctor (I now have an Endocrinologist on my list) said to me “it’s a small dose but if u find that u start feeling anxious, ur heart races, u start sweating a lot or experience rapid weight loss, call me cuz that means it’s too much and I’ll have to adjust the dosage”  Great! More things to look out for over the next few months. One thing that MS has taught me over time is how to “listen” to my body and really be in tune with it, so additional monitoring to be done over the next few months.

Time will really tell how this goes.

That’s it For Now

so therapy’s over. They were 9 well spent hours each of PT and OT. The Shepherd Center and those who work there are amazing (I say this from my personal experience and I’ve heard stories from other people). Anyone out there reading this who is living with MS in the Atlanta area, if you can afford to wait the 2 month waiting period to get in, do it. U won’t regret it and it’s well worth the wait.  There’s also an MS Wellness program that I’d love to join but alas all the sessions/classes offered happen during the day so I can’t join. I was discharged 2 weeks ago but both therapists told me to do things on my own for a couple months and then come back. So that’s what I’ll continue to do until my insurance company puts their foot down.

The very first PT visit started with an evaluation that included a 6 minute walking test and at the end of those 6 minutes, I’d taken 153 steps. During the last session, we reevaluated and in those same 6 minutes, I took 225 steps. I also tested better in some of the strength tests that Ian had done before. Yay!! Improvement is great although i eh go lie, a little part of me was thinking that maybe it was just a better day for me plus the day before had been leg day in the gym – hmmmm…there’s that “glass half empty” person I know. At the end of the reevaluations Ian said, “well. U have 20 more minutes…anything special u want to do?” I eyed the Alter G…it was calling my name. Admittedly, I did much better in it too. The first time, I could only walk at a speed of .3 with some issues and on the last day I was at .4 with no issues. So it’s over for now, back in it sometime in 2018.

the last day…all zippered in

ive never been part of an MS support group or attended any meetings/support sessions. One time years ago, I enrolled in a 6 week wellness class that had been sponsored by the MS society and it just so happened that every single person in the class had MS. I must say it was good to be around people who knew and understood what I was going thru. Some of us tried to keep in touch after but that eventually fizzled to nothing. Rebecca (OT) suggested that I become a part of the support group that meets at Shepherd. They meet on the 2nd Saturday of every month so I went last Sat morning. Two interesting things happened.

* At some point in our discussion -it was only 7 of us, 4 of whom had a neurological disease and I was the only one with MS – the leader of the group said that she could hear it in my voice. Eh? That was a first…well she was referring to the tremor that I mehself sometimes hear. She went as far as to say that had we been talking on the phone, she would have thought that I had MS. Apparently she’s heard the same tremor from multiple MS patients…go figure!
* I met someone who hooked me up with contacts to start my new medication regimen – that of the alternative kind. Ever since medicinal marijuana became legal for some diseases (MS included) in GA, I’ve been telling myself to look into it and I have but I’ve also been dragging my feet (no pun intended). Well this chick was there who strongly advocated for its uses (she herself uses some products to manage her disease) and I knew that I had to stop stickin. I’ve left messages for both my doctors so that hopefully at least one of them will be willing to put me on the registry and I will be on the way. The company to which she referred me makes CBD oil products to be ingested as well as topical massage oils and lotions. I’ve already spoken to the owner…more to come on that.

alright…well I gone so. allyuh do have a great weekend!

P.S. – One of my calls was returned.  the MSCA is not participating in anything related to medicinal marijuana so they won’t add me to the registry.  fingers crossed that my primary care doctor will or else i’ll hadda figure something out.


Lemtrada Progress

I tend to feel badly/kinda dislike (dislike is harsh wording) when I’m asked how the “new” medication is working. The reason is that I really don’t know exactly how to answer that question and I really do feel badly fumbling thru whatever answer I give. MS medication is not like ur typical Tylenol Cold, Aleve or any other OTC medication you buy – u buy them and within a couple hours, your pain/sneezes/coughs etc (should) go away. All the MS medications promise to slow down the progression of the disease and then there are one or two that claim that some disability may be reversed. So is it working? I don’t really know…I definitely hope so…I certainly can make an assumption that it is and I go with that. One thing that I can say with certainty is that I have no additional MS symptoms and no new worries…I still only have walking issues, weakness on the left side of my body and my left hand closes up.  If that is a measure of whether or not it’s working then “yup! It sure is working”. I don’t think that that is a stretch, so I usually go with that.

its weird. I’m “with myself” and see myself everyday – indulge me. Most times, I think that my disability is slowly but surely getting worse. I have good days and not so good ones – funny, the good are almost always on a weekend. On those not so good days, my movements seem much more laborious and in my mind, I move a lil slower. Well, within the past month or so, I’ve seen a number of people who are not in contact with me all that often and quite a few have remarked that “u moving very good” or “u walking better than when I last saw u” or “u moving rhell fast” and “u appear stronger than last time”. At first, I was a lil sceptical (wondering if that person really knew what they were talking about), but the more people who say it, the more I’ve started thinking that maybe I’m the crazy one. Don’t get me wrong, I still have some “not so good” days, but maybe overall I am looking better and so is the medication working? Maybe it is.

Lemtrada has a laundry list of side effects(of course) and I am constantly being monitored so that at the first detection of any of them, steps will be taken to combat (I finally finished the dose of antiviral drugs I was prescribed after the 2nd dose so I think it’s safe to assume that my immune system has completely regenerated). I do a skin check regularly so that I can report any abnormalities as soon as I notice anything. Every month, a chick comes to collect a urine sample and 4/5 vials of blood that are tested to make sure there are no changes with either. Every 3 months, she takes an extra vial so that my thyroid functions can be tested because it can cause overactive or underactive thyroid (this is just so comical to me because it just seems counterintuitive – I feel like if it must cause thyroid problems, it should jes choose one and run with it).

I will be remiss, if I don’t mention here that my veins always cooperate with her…they muhbe get tired of playing hide and seek all the damn time – no need for celebration every time she comes over and she’s usually done in a few minutes or so.

I have no more doses to take – there are only 2, so at this point, it’s just to wait and see what happens. The last time I went to the MSCA, my doctor talked about sending me for an MRI in a few months, so at that point I guess I’ll have a clinical answer to “are the meds working?” If I have no new lesions on the brain or spine, then I’ll definitely be able to say, “yes, it is!”…I think 🙂

MS in the News and Some Ole Talk

So last week the FDA approved a drug that is the first of its kind.  In addition to showing promise in terms of disease progression for sufferers of the relapsing remitting strain of MS (RRMS: relapse when “shit goes crazy” for a while and then things settle down and u go back to normal), promising results were also observed in patients suffering from the primary progressive form (PPMS: things just get progressively worse over time and there’s no “back to normal” period). This is GREAT news for PPMS folk because until now, their options were nil as far as MS specific drugs.  It appears that it will be administered via infusion and supposedly, it’ll be a relatively “safe” drug wrt its side effects.  The drug works by targeting specific cells of the immune system that are thought to be those that damage the myelin sheath and wreak havoc (the “problem” cells if you will).  The medical research field has made progress in leaps and bounds in the past 12 years with respect to available drugs – this is good to see and may be promising for a cure?(a gal can dream).  I remember wanting to say, “lady u mad?” when she told me I had to choose from injecting myself 1,3 or 7 times a week.

Read more in this article

I’ll bet my last dollar that many people have been waiting (patiently or not) for this day so it really is exciting news.

A couple days ago, it occurred to me that I didn’t share one of the most important things about the new scooter, that from now on will be referred to as Bumblebee – of course…how did I take this long to think of that? (it really is a lil transformer…most people can’t believe how he folds up). Anyhoo, it’s actually a most embarrassing feature. When I reverse, he makes the loud (very loud) beeping noise. One day I was in a bank, a quiet bank, with about 7 customers in line – everyone was focused on what they needed to accomplish; u could hear a pin drop – and I was done with my teller transaction and couldn’t just drive away.  “GREAT!” I had to back up…BEEP! BEEP!! BEEP!!! smh..it’s bordering on obnoxious. 
ugh! but I love Bumblebee still 🙂

i also thought I’d share that I originally stopped blogging (on Blogspot) at the end of 2014 because my physical disability was in a downward spiral and it became more depressing to write than not (looking back, I realise that I’d probably been in a lil funk too).  As I came to grips with my worsened state, the writing bug bit me and I really wanted to write again, so I started back last year June.  I stopped again in October last year but that wasn’t my decision – I was forced to stop.

Remember I have issues with my left hand too, so I always use an iPad app to type the majority of the posts and then clean up, add links etc on my laptop before I publish.

Well last year, the Blogspot app I was using kept crashing so I had to make some changes and so, here we are. I say all that to say that I have no plans to stop again.

This time, I’m here to stay.

New Site

I’m here on a new site.  New site, new look but we limin the same old way.

Thanks to M, my prior posts were migrated (in fact, thank you Michael for helping me launch this new site!) so to pick up where I left off, the 2nd round of Lemtrada went off without a hitch, so to speak. there were no problems with the administration of the drug, no side effects (short or long term (thus far)), no problems…until I went back to work and got the news that my short term disability claim was denied -they said that they didn’t have enough proof to substantiate my being out (guess I should have taken my laptop in for some juice from the IV too). Allyuh eh serious – steups!!!

When it was all said and done though, I was able to use sick time (I hardly ever call in sick) to get paid so everything worked out.

Back to the new site.  Even tho the old posts were migrated, the links to my Trini dictionary are broken so don’t be alarmed if u’re trolling thru old posts and u aren’t able to get there.  Good news is that the dictionary is here so you can still get the definition if you’re totally confused.  Also, looks like some of the fonts are skewed but doh hold it against me – those posts were on a different platform.

This is going to be a short post – just wanted you to know I’m back up and running so we’ll resume shortly.