Wow, this might have been the longest break I have taken from blogging so far! Where have I been? Sick! I now know the difference first hand between simple flareups or pseudo-exacerbations and acute exacerbations or as I call it: catastrophic failure! Okay that might be a little dramatic but that sure is how it felt! This time around was different than my initial exacerbation that brought about my diagnosis but it was still pretty debilitating which is why I disappeared from my blog and Facebook but now I’m feeling a little bit better and so it’s time to catch up!
So here’s the problem, about a year ago when I was stuck in bed experiencing all these new wacky symptoms I had a digital voice recorder at hand to keep track of my progress as it happened. Doing this allowed me to keep track of the exact date and time I experienced something simply by pushing a button and mumbling into the microphone. This time around I did not do that because at first I did not think I was experiencing a quote unquote exacerbation but then overnight it became clear that I was… But I felt so sick that I never thought to bust out the tape recorder again. I obviously don’t have the greatest memory so I’m afraid most the juicy details have been lost but here is basically what happened.
I woke up one morning with an all too familiar sensation along the right side my body: Pins and needles and/or numbness… No easing up on me this time… Just attacked me full-blown out of nowhere from my foot, along my leg, up my side, and into my shoulder. It was also in both hands and creeping up my right forearm.
“No, no, no! Why is this happening??? Okay hold on, maybe it’s nothing, maybe I just got a little stressed out and a little too hot.”
The next day: The numbness was not gone, in fact, it was spreading across to my left side a bit, mostly in my abdominal area. I was also noticing a growing weakness in my legs… The intensity of my numbness was growing in my hands… Still I tried to play it cool and even knocked out a photo job I had about half an hour away although, by time I got there I felt completely drained so I popped my head in the bar, snapped a few pictures of people watching the Women’s World Cup, and I was gone. After submitting my photos I pretty much just laid around for the rest of the day trying to rest.
Day three: This is where I knew for a fact that I was having an exacerbation… The denial card was no longer playable… My legs were getting so weak that I could hardly stand and the numbness was not getting any better. My vision was starting to go again, the fatigue was horrific, I was even battling my crazy hiccups again, and I was experiencing something new:
The MS hug.
It started in my chest making it rather uncomfortable to breathe. I had heard about this symptom before but never experienced it and as the so-called hug made its way into my abdominal muscles I began to understand why many people found the given name of this symptom to be rather cruel. I don’t know who coined the phrase but they either never experienced it them self or never experienced an actual hug from someone that was not secretly trying to kill them. This has been one of the worst symptoms I have ever experienced!
My stomach was so tight that I could not eat! Just one cracker made me want to throw up! I was constantly nauseous and it hurt to bend or twist into any position besides the upright sitting position. Sleeping was even difficult as I could not lay on my stomach for obvious reasons, I could not lay on my side as it hurt equally, and I could not lay flat on my back because my stomach could not stretch out that flat so I had to try to lay on my back will with my legs propped up as high as I could keep them so that I was as close to a sitting position as I could be only on my back. It was very uncomfortable!
At this point of course I was not “sleeping” in my own bed because a while ago I had bought a loft bed to try to give myself a little bit more room in the 10×10 bedroom I shared with my brother and I was now too weak to climb into it. So at first I slept on the couch and then when we realized this was going to last a while we brought in my full size mattress from my previous bed which is way more comfortable than anything else I have to sleep on. So that helped quite a bit but sleeping was still a task in it’s own even with all my medication.
So now that I knew that I was having an exacerbation I was calling everyone I could to get some kind of help or advice. My LDN doctor told me to stop taking my LDN until my exacerbation had come to an end and my neurologist wanted me to come in to make sure this MS hug was not some kind of cardiovascular failure…
“Ummm… Yeeeeah… How about you just set up my IV steroid treatment like you were supposed to do several weeks ago instead of trying to steal another co-pay from me?”
Well I got in contact with the infusion center and set everything up on my own. We decided it might be a good idea to simply stop by my neurologist’s office just to see what he had to say. At this point I was determined to get my plasmapheresis treatment. Pain killers killers did nothing nor did the muscle relaxers I got from a friend of mine. I wanted relief! I had done much research on the procedure and based on my experience with steroids in the past it seemed like it would be of great help to me in particular. Now previously this Neurologist had told me that plasmapheresis would not affect the overall progression of the disease and I was already well aware of that but at the time I did not see it necessary to argue the point because I did not entirely need it at the time. Now that I was relapsing I was ready to fight for it because I did not want things to get worse than they already were.
I had my list of what I wanted and a copy of a report from the American Academy of Neurology regarding the use of plasmapheresis.
“Plasmapheresis is established as effective and should be offered in severe acute inflammatory demyelinating polyneuropathy (AIDP)/Guillain-Barré syndrome (GBS) and in the short-term management of chronic inflammatory demyelinating polyneuropathy (Class I studies, Level A).”
Long story short he told me that plasmapheresis was too dangerous to use in a situation like mine especially because he thought it was completely useless. He told me he didn’t care that I had “some papers from the Internet” because he had experience and plasmapheresis would be of no use to me. I told him that I did not pull this information off of Wikipedia, this was a report from a relatively reliable source of information (the American Academy of Neurology). He then flat-out challenged me to show him a patient whose neurologist actually used plasmapheresis along with a steroid treatment as a casual means of treatment for an exacerbation. I told him I would and that I would also send member services a formal complaint. I can’t remember exactly what he said next but he had also told me I was not experiencing an exacerbation so I had completely had it with this joke and his condescending attitude. I stood up, told him he was wasting my time, and I left the room.
Luckily my mom stayed behind as I made my way up to the infusion center because it seems that after I left he had a slight change of attitude. All of a sudden the spinal MRI that I wanted that until that moment was previously completely unnecessary to him was now a good idea. The extra two days of IV steroids was also not such a bad idea anymore. Disability? Well that was out of the question! Not anymore! Three months! Why so generous Dr.? The only thing he didn’t completely cave in on was the plasmapheresis, for that he gave me a referral to a doctor in LA for a second opinion. Pft! I’m not going to waste my time. A Kaiser doctor is a Kaiser doctor and something’s telling me the reason they are so reluctant to set me up with plasmapheresis is that plasmapheresis cost about $2000 where Solu-Medrol cost about $50 and someone might get in troooouble for using something so anti-profitable!
I mean, you can’t tell me they are concerned about my health and possible side effects when they are so willing to throw around all these prescription medications and addictive narcotics at me. Let’s look at the last medication this very neurologists prescribed me versus plasmapheresis.
Gabapentin side effects
Get emergency medical help if you have any of these signs of an allergic reaction to gabapentin: hives; fever; swollen glands; painful sores in or around your eyes or mouth; difficulty breathing; swelling of your face, lips, tongue, or throat.
Report any new or worsening symptoms to your doctor, such as: mood or behavior changes, anxiety, depression, or if you feel agitated, hostile, restless, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.
Call your doctor at once if you have a serious side effect such as:
fever, chills, body aches, flu symptoms;
swelling of your ankles or feet;
rapid back and forth movement of your eyes;
Some side effects are more likely in children taking gabapentin. Contact your doctor if the child taking this medication has any of the following side effects:
changes in behavior;
trouble concentrating; or
acting restless, hostile, or aggressive.
Less serious gabapentin side effects may include:
dizziness, drowsiness, weakness, tired feeling;
nausea, diarrhea, constipation;
dry mouth; or
loss of balance or coordination.
This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
The most common problem is a drop in blood pressure, which can be experienced as faintness, dizziness, blurred vision, coldness, sweating or abdominal cramps. A drop in blood pressure is remedied by lowering the patient’s head, raising the legs and giving intravenous fluid.
Bleeding can occasionally occur because of the medications used to keep the blood from clotting during the procedure. Some of these medications can cause other adverse reactions, which begin with tingling around the mouth or in the limbs, muscle cramps or a metallic taste in the mouth. If allowed to progress, these reactions can lead to an irregular heartbeat or seizures.
An allergic reaction to the solutions used to replace the plasma or to the sterilizing agents used for the tubing can be a true emergency. This type of reaction usually begins with itching, wheezing or a rash. The plasma exchange must be stopped and the person treated with intravenous medications.
Excessive suppression of the immune system can temporarily occur with plasmapheresis, since the procedure isn’t selective about which antibodies it removes. In time, the body can replenish its supply of needed antibodies, but some physicians give these intravenously after each plasmapheresis treatment. Outpatients may have to take special precautions against infection.
Now yes, a lot of people are on Gabapentin and have no issues but that is my point. Just because it’s possible does not mean it’s likely and the very few side effects of the plasmapheresis procedure are all pretty much, in my opinion, are related to human error with the exception of a few things but anything that works is going to have its risks and side effects. The only difference between this procedure and most prescription medications is that you can’t tell if the medication is bad for you until you have a bad reaction to it and you can’t tell if plasmapheresis is bad for you unless a doctor messes up. So unless you have a really bad doctor who doesn’t know what they’re doing you probably have more of a chance of reacting poorly to a prescription medication then you do having a bad experience with this simple procedure. But who knows, I could be completely wrong, I’m basing all of this off of information from the Internet and other people’s experience.
So before I move on from this rant I just want to say, if you have had any experience with plasmapheresis please let me know and if your doctor has in fact used it along with steroids for the treatment of an exacerbation I would love to get an e-mail from you with your doctor’s info so that I can send it to my neurologist and let him know that yes, doctors do in fact use this procedure for treating an acute exacerbation.
Moving on: So I finished my steroids, had a bit of an episode of low body temperature (a steady 95 degrees for about 3 days), and have been battling nausea from the MS hug on and off. I’m feeling a little bit better today but still don’t have all my energy back or full control of my hands. The pins and needles are not as bad nor is the grip of the MS hug but my balance is still pretty screwed up and my strength is still pretty low. So I have got a little bit better but still nowhere near my so called 100%.
Oh yeah, one more thing, my family decided to try to compromise a little bit to help with my health. If you ask me though it’s not entirely a small compromise… My brother agreed to move out of the bedroom so that I can have a room to myself to allow me to relax and sleep when I need it for as long as I need it. To allow me to have some space to myself to hopefully reduce my stress and aggravation. He’s sleeping on the couch bed we have and set up a space for himself in the garage like I have previously done for so many years. I have to admit I still have not gotten used to having my own room, it feels kind of wrong, I feel somewhat selfish… I’m going to do my best to make good use of this time and space though especially for school.
Well that’s the basics of what has been going on. I know I kind of rushed through it all but I couldn’t possibly include all the details of my absence, not even all the ones that I remember. I’ll try to get back on track with the blogging and let everyone know how I’m doing. If anyone has any questions just post them below and I’ll definitely answer them. Thanks for reading!