We believe I’m having a multiple sclerosis flare-up/exacerbation/relapse caused by another demyelinating lesion in my brain. I am not a happy camper about this, but then no one who has to deal with MS (or any other lifelong disease) would wish this on themselves or others either. I hate writing “downer” posts but I think it’s important to document what is happening for myself and for any others who may be going through the same thing.
To be clear, the “we” in this post is my husband and myself. He now has to handle all of my medical scheduling and documentation because it is too much for me – too much stress, to much for my memory and too much work – and I just flat cannot deal with it.
My daily Copaxone syringes ran out in April. We had an appointment with the MS neurologist to renew the script and thought everything we were supposed to do was taken care of. We even received a courtesy call two working days before my appointment reminding us of the appointment. THEN, the DAY BEFORE my appointment, the neurologist’s office called and said we had to have a referral from Medicaid. What? This neurology office doesn’t even accept Medicaid payments, so why do I need a referral??? They said if we didn’t have a referral, we had to pay cash for the visit. THAT made no sense either, since we were already placed on the “cannot pay” (due to low income) list by this doctor, who found out that her low income patients were using their funds to pay for her expertise and not for their medications. We thought that this was convoluted, but called our primary care physician (PCP) for the referral – which they told us would NOT happen overnight and we needed to cancel our appointment.
My husband called the neurologist’s nurse daily, sometimes two to three times daily, to get the prescription renewed. Throughout the last year, that nurse ALWAYS returned our calls – but for the two weeks prior to my medications running out, she refused to call us back. Nothing. Nada. Even his pleas for help went unanswered – and if you know my husband, you would know that pleas are not his norm.
Finally, the wonderful caseworker at Shared Solutions, who had been following my first year of taking the Copaxone very closely, called. My husband explained the problem and although there was obvious concern in her voice, she said for him not to worry about it, she would take care of it. WOW, someone who actually listened, returned telephone calls and followed through with her statements was a welcome relief. And the case worker made it all happen – she jumped through the doctor’s hoops for renewal, she jumped through the Medicaid hoops for renewal and she got my meds renewed.
But, not before I had been out of them for two weeks.
Two weeks is a lifetime when you have a disease that you know is a ticking timb bomb in your brain.
And what chapped my hiney more than anything was when we finally did get our referral to the neurologist, she pushed us off on her physician’s assistant (PA)! Mind you, we really like the PA – she is like us insofar that she pulls no punches with what she says, she answers all of our questions and thus far, has returned all of my telephone calls. But, when you’ve drivin 80 miles to see a specialist, you darned well EXPECT to see the specialist. We told her we had been out of the Copaxone for two continuous weeks and she immediately jumped up and went and got me a three-week supply from their office. IF the neurologist’s nurse had called us back, perhaps they could have done the same BEFORE my script ran out instead of after!!! And before you ask, we did not know if the PA could renew my prescription – hence the reason we didn’t call her in the first place!
This is our first year of dealing with all of these medications and doctors – if they do not tell you what you need to do, then how do you know???
(As an aside, we recently found out that at some point, the neurologist had put in my chart that I was not to be prescribed any triptans for my migraines, because of the family vascular disease on my dad’s side – brain aneurysms took both his life and my older brother’s lives while they were in their 30s. The neurologist made NOTE of it in the chart, but NEVER told us that. Here I had my PCP, the neurologist and her PA trying to medicate the migraines away and I could have, frankly, caused my own aneurysm if the PA had not told us of this VERY. IMPORTANT. NOTE. that was made at some point in the past but the neurologist did not inform us of her chart notation.)
Also of note is that this medication can take up to six months to do its thing. I don’t know (or cannot remember) all of the ins-and-outs of the medicine, but it can take six months to work as it is supposed to – and what it is supposed to do is to lower the rate of your recurring brain lesions. So, I didn’t just have two weeks without the medication, my six month countdown also returns. For example, we know I had three new non-demyelinating lesions in my brain over the past year per a January 2012 MRI. These probably occurred before I was placed on the medication or in that six-month grace period before the medication can actually begin working. Since they were non-demyelinating, the neurologist was not concerned with them. In MS, most of the time you are treating the symptoms of active demyelinating lesions on a regular basis while trying to find a medication that works to slow down the lesion process. Unlike some cancers, MS is not curable. I will live with it for the rest of my life….and pray that on a long-term basis, we keep the number of demyelinating lesions at bay.
Anyway, back to the original issue – the relapse in my MS. It started with foot cramps, which frankly were just weird because I have no feeling in my feet from the ankles down, but I could definitely feel these painful muscle spasms in my feet. Then, after about a week, they moved up to the muscles in my legs. Luckily, this is a common occurrance in MS patients (so we found out from our own research) so we have been working with the PA to medicate them away. As of Monday, they had disappeared from my legs but I had them nearly daily in my feet. The PA was happy in that she felt we had the spasms “moving south” and we just needed to up the dosage to stop them in my feet. She increased my dosage of meds on Monday and I will try that for the week. I had a foot cramp (not a full blown spasm) yesterday and this morning I woke up having a very hurty muscle spasm in my calf muscle. I cannot say for sure that these were not caused by the stress of going to the doctor yesterday or not, so I will just document them and continue monitoring to see if the meds are working as they are supposed to.
I have had a migraine for 11 or 12 days – two days in the past two weeks I got a reprieve, but it returned with a vengence thereafter. A “turn off the lights and be quiet” migraine. NOT easy to deal with when you have four children at home! I can “feel” the migraine in the left hemisphere of my brain – my right side feels normal, but if I could just cut off the left hemisphere, I’d feel great! 🙂
Last night, the entire lower half of my face went numb and was tingly all over – feeling like your hand when it falls asleep and slowly wakes up. The numbness on the right side of my face, after a stabbing migraine, was what sent me to the hospital in December 2010 and the MS was diagnosed, so I *know* that this is also MS related.
I am also back to running into things when I walk, unable to keep my balance or move through a space without bumping into things. Again, this was a symptom I had before my initial diagnosis. I am currently sporting a lovely baseball-sized bruise on one thigh because my husband had cleaned under our dining room table and did not put it back where exactly sat and I misjudged its placement one evening and plowed right into it. OWWW.
This is the “face” of an MS relapse in my world. These can be different for each MS patient, but the symptoms that are common are well-documented on various websites, so researching them after they start has been rather simple. AND, with each new symptom, I call the PA and have received a call-back from her within an hour – so, you can bet we are DONE trying to get the neurologist’s nurse to help us.
My next step in this venture is to get a referral and make an appointment with another neurologist in the same office I already go to, as she specifically handles migraines. We will see if perhaps she can help me with this head of mine!!!