MULTIPLE SCLEROSIS ATTACKS: Exacerbations, attacks, and flare-ups, oh my!
What is MS?
Multiple sclerosis (MS) is a chronic disease that affects an estimated 2.3 million people around the world, for which there is currently no cure.3,4 MS occurs when the immune system abnormally attacks the insulation and support around nerve cells (myelin sheath) in the brain, spinal cord and optic nerves, causing inflammation and consequent damage. Damage to these nerves can cause a wide range of symptoms, including muscle weakness, fatigue and difficulty seeing, and may eventually lead to progressive disability.
My MS exacerbations (attacks/flare-ups)
What is it like to have Multiple Sclerosis and Fibromyalgia (in other words, how will it affect a person physically)?
When I think of topics to add to this writing, I try to remember what things I wanted information on when I first got my MS diagnosis. Even though every patient is different, and even though medications affect different patients in different ways, I thought that reading about what I go through may be helpful. I apologize to you in advance if it is not and I urge you to consult with a physician if you need medical advice (because I am a patient and not a medical professional).
By the way, I am aware of the repetition of/varied forms of the adjective “different” in the previous paragraph and elsewhere in this book. It is no wonder to me that there is no cure for MS yet when there is so much variety with it (patient-to-patient, day-to-day).
I think I am going to try the “short list” first. I want to go over the exacerbations (also called attacks and flare-ups or flares) that I have had and that were “visible” to me. It is possible to have an MS attack without knowing it’s happening. I will start with my first health issues that I believe led and/or contributed to the first MS Attack that I had in 94.
From the moment I was born and during my early childhood I was sick practically all the time. I also had very bad allergies that led me to getting shots at a hospital about two times a week. This was while I was still very young (it would have been prior to me being in the sixth grade.) I have spoken to others with “Invisible Disabilities” and we have discovered that quite a large number of us had similar problems with regards to allergies and medications during our childhoods. Not every single one, but many.
Skipping on to my “young adult” years: It was the middle of 1994 and I was dating someone who didn’t appear (at the time, to me) to care about me the way I cared about him. Adam and I had been together for almost two years and after all that time we still were only seeing each other on the weekends. We would meet at a dance club on Saturday nights and would go back to where he lived in the evenings afterward. He was approximately forty minutes away by car and about 90 minutes by train.
I started getting Urinary Tract Infections (UTIs) while I was dating Adam. I won’t go into a lot of detail about that here as I cover it under the section, How Did this Start and Where Did Things Go? but I will say that I started getting them regularly in a short period of time. After a while, I was getting them monthly. I joined a yearlong study involving drinking Cranberry juice to see if it helped (it did.) The reason behind the UTIs remained a mystery until I found out about having MS.
Later in my relationship with Adam, I started having trouble breathing. I was wheezing when I inhaled and at times it felt like the oxygen wasn’t going into my lungs. I was with Adam and had to take an early train to get to the hospital (Adam had a truck, but he made me take the train). I had to get to the ER on my own. I didn’t feel that Adam was being the most caring and supportive boyfriend he could have been, but I believe he had to get to work that day. I took the train into the city and went to the Hospital. I got to the Emergency Room (ER) and was put on an oxygen tank almost immediately. I was eventually given an inhaler and told I had bronchitis and that it would go chronic if I didn’t quit smoking cigarettes.
This seemed (at the time) like an isolated incident but I wonder if it contributed to what happened next. A few months after this happened I started having my first bout of “optic neuritis”. I did not know that is what I had because I had never had any eye problems before (I had perfect vision at this point) and I had no idea that I had Multiple Sclerosis. As I said in another section (under My MS & Fibro Journey), I didn’t know what was wrong. I thought I had an odd form of pinkeye or something. I went to the hospital and found out I had something far more serious, but nobody appeared to know exactly what was wrong.
My pupils were two different sizes and when I looked diagonally at anything it doubled and or tripled in my vision. I was told I might have a brain tumor. Apparently our attacks can easily be mistaken for other things (I also found out I could have been given tests to make sure I wasn’t a “stroke victim”). I didn’t get a diagnosis after all this. I was told I might have MS or Lupus, but nobody knew precisely what was wrong. I mentally blew it off completely. Looking back I’m kind of glad I did this. It was almost a full year before I had health problems again and that year of not thinking I had medical problems was a pretty good year. It was easier to put this out of my mind because I also did not feel that I had anyone I could confide in about it. I certainly didn’t feel I could tell my boyfriend Adam what was happening.
Approximately a year later (towards the end of 1994) I had another odd vision problem. The hardest part about this “eye problem” was that I couldn’t come up with a way to describe what was happening. Thankfully, I was working at a place that had healthcare benefits and I was working in a medical area. It turned out this was another “bout” of optic neuritis. I went to see my PCP who sent me to a Neuro-Ophthalmologist (an eye doctor who specializes in people with Neurological disorders). I was given a visual field test that showed I had a blind spot in the same spot in both eyes. I was then sent to have my second MRI and a “visual evoked potential” exam after my doctor told me he suspected MS based off of the MRI results. I was assigned to a Neurologist.
Unfortunately, the Neurologist my PCP referred me to did not specialize in working with people who had Multiple Sclerosis. He was definitely not a “people person” and he also wasn’t particularly helpful or responsive at all. All he did was confirm the diagnosis, unnecessarily scare my mother and me, and then become impossible to reach; he would not even return phone calls or emails.
As little as I knew about my condition, I knew I needed a different Neurologist. While my mom was with me I had asked this Neurologist to give me an example of what an attack was like. He used a very bad example (a “worst case scenario”) that got my mother and me extremely upset. He told me he had a woman who came in saying her left arm was “tingling”. He then told me her entire left side wound up paralyzed a week later.
How are we, as patients, expected to react to being told something like this? As I have mentioned in the section My MS and Fibro “Journey”, this was an incredibly bad example he used to describe an MS attack. After this, my mother would call me almost daily to make sure I was OK. If my allergies started acting up, she and I would BOTH panic about what was going to happen to me.
It took me a long time to get over what this Neurologist had told us. It took my mother twice as long - she had to meet another Neurologist who was able to reassure her. She had a VERY hard time coming to terms with the fact that I had this “MonSter” but after hearing the horrible example the first Neurologist gave us of an MS attack, coming to terms with knowing her daughter had it was much harder than it should have been.
I found a good Neurologist!
Thankfully, I found a very good Neurologist next (an MS Specialist). This was in part from working in a medical area, but it was also from speaking with my local chapter of the National Multiple Sclerosis Society (NMSS). The MS Neurologist I went to was in the same hospital as the Neuro who diagnosed me, and when our appointment came to a close he told me I could come to him or go back to the first Neurologist I saw for my next appointment. When I told him the example the first Neurologist had given me, my new Neurologist got a bit upset and told me it was crazy to give an example like that to someone who “obviously has such a mild case of this condition” and that something like this was too far fetched to offer as an example of what I should expect to face. This new MS specialist remained my Neurologist for a few years. I absolutely loved having him as my doctor. Unfortunately, he became extremely popular (he was also very involved in doing research on MS) and was, therefore, very hard to find/see so I wound up eventually changing doctors and hospitals.
Montel Williams was diagnosed with MS in 1999 and he had a Neurologist at Brigham and Women’s’ Hospital (BWH). With a little bit of research on the web and, after discussing him with people I worked with in the medical area, I found out that he had given some money to Brigham and Women’s Hospital (which helped them open an MS Center) and that he had an MS Specialist there. I decided to follow his progress since he looked like he was doing well to me. I wanted to know his “secrets” if he had any.
What impressed me about him most was how he used exercise to help with his day-to-day MS symptoms. When I got myself back into a gym “routine” I remember telling one of the faculty members I worked for what I was doing. He then asked me if I could bench press the weight level that Montel could. I laughed, said “no” and then told him I might not be strong enough to do it yet but that my goal was to become that strong. I still have arms that aren’t as strong as they should be, but I am glad I decided to follow the path of exercise and healthy eating that I had discovered when researching Montel.
The “healthful living” may not have cured me, but it eventually made me feel much better both physically and psychologically. Thankfully, I not only decided to follow in Montel’s footsteps as far as healthful living is concerned, but I also eventually switched to his hospital after my Neurologist became so hard to stay in touch with. I am getting a little bit ahead of myself here so I am now going to move on to the next attack I had.
About a year after the second bout of optic neuritis, I had another (at the time) difficult to describe attack. It happened on a bus-ride to work. I got off the bus and suddenly felt like I was being pulled, as if by magnetic force, to the left. I then became extremely dizzy. I had to let my boss know what was going on and then I had to go home. The dizziness/vertigo was horrible – I had a very hard time walking because of it. This went on for a few days and I finally went to my primary care physician (PCP). Unfortunately, my PCP was another doctor I was not too happy about. I chose him because he was my mother and stepfather’s doctor and I respected their opinion of him. They both felt he was a very good doctor (and he was, to them). He was not a good doctor to my husband, and me, however.
While this attack was going on, I should have gone to see my Neurologist or at least tried to contact him first. However, I thought my insurance company required a referral from my primary care doctor to see another specialist. Unfortunately, my PCP continued to ignore that there was anything physically wrong with me, even after I was diagnosed with Multiple Sclerosis. He once told my mother he thought I was “extremely proactive” about my healthcare which I took as a very diplomatic way of calling me a hypochondriac. When I told him what was going on with the dizziness and the vomiting it was causing he told me he was sure I was having an inner ear infection. I was also asked if there was any possibility I could be with child and experiencing morning sickness. I was tested for this and was able to verify that I was not. At some point, I had a doctor tell me I probably could no longer get pregnant. I honestly wish I could remember who it was who told me this. Years later, right before I had a supracervical hysterectomy to remove fibroids, I got my period for the fist time in years. This leads me to believe that I may have been able to get pregnant after all. I am very, very fortunate that I never did.
My PCP refused to do anything beyond this point and he also would not give me a referral to see my Neurologist. I eventually decided to take matters into my own hands and I made an appointment to see him (my Neuro) on my own. Thankfully he took what I was going through very seriously. He told me I was having a classic MS attack and he told me this by being very diplomatic (in other words, he did not badmouth my PCP but did say he could not understand why the doctor refused to consider that I was having an exacerbation when I was exhibiting “classic MS symptoms”). I was given Antivert to control the dizzy feeling. The phrase "the room is spinning” is not one I can take lightly, particularly not after having gone through this experience. It was awful. When the room is spinning and all you are doing is lying on your bed trying to fall asleep it is very hard to keep fighting to persevere. Even though the temptation to give up can be very strong at times it is more than worth pushing onward, in my opinion.
For my next attack, the dizziness came back with a vengeance and I couldn’t hold anything down (liquid or solid). I was now a patient at Brigham and Women’s Hospital with another good MS Neurologist. I was put on an IV steroid treatment for the flare-up. Unfortunately, it didn’t help me much at all. Bear in mind that I know of many other MS patients who have benefited from the steroid treatments but as I have stated before, different medications work differently for different people.
The only thing(s) that helped with the nausea were the Meclizine pills and time. Additionally, I have since learned that drinking water has the potential to make things much worse with regards to nausea. This was something I did not know at the time of this attack, unfortunately. One thing I have learned since is that drinking ginger ale and/or ginger tea with honey would have been a much better choice. This particular flare lasted just under two weeks.
Approximately one year later, I had the worst attack I have ever had (before or since). My left arm went numb and this brought back the memory of what my first Neurologist told me about the patient who wound up temporarily paralyzed on one side. One major problem with a disease like MS is not knowing what is going to happen next. Despite everything I had been told about having such a “mild case” of MS, I couldn’t help but wonder where the numbness in my arm and hand would lead. Thankfully the numbness remained localized in my left arm but this was still a fairly major problem for me because I am left-handed so I was unable to write.
As with every attack I have had, I had several left over side effects/symptoms from this one. I had (and continue to have) tingling and a lack of sensation in both of my hands. I also started having some significant pain problems. I thought the pain was just from the MS, initially. It took me a few years (along with getting burned out of my home, being laid off a year later, and then losing a very close family member a few years after that) to find out I also had Fibromyalgia. What the MS and the medications did to me along with all of the stressors may have been contributing factors to me developing the Fibro “syndrome”. However, I do not know that I will ever be certain what caused it or precisely when it developed.
Despite all of the physical problems having these conditions can cause, the biggest challenge with having an invisible disability is often the way others view and/or treat us. The way people act towards people with invisible disabilities is a never-ending battle (of sorts). It is frustrating and feels unfair that those of us who have these health problems have to constantly prove that something is wrong. I understand that, many times when we have to prove ourselves to others, it is because they do not understand. This does not change how hard it is on us (the patients) when we are not believed.
I just want to state as a side note to all friends, family members and loved ones of people who have these “invisible” illnesses (if you are reading this you may not need this but perhaps you can share it with anyone who might): whether you can see something is wrong with us or not is not what matters. What is relevant is that you are someone we should be able to depend on and having you call us a liar, or lazy, or any of the other horrible things that you may want to label us is incredibly unfair and hurtful. How would you feel if someone did something like that to you? Is it that hard for you to attempt to empathize with us? It should not be. Just because you cannot see what is happening does not mean it is not. If you are married to someone with an invisible illness please do not forget the vow you made to love your partner “in sickness and in health.” You made a commitment and you should stand by it.
There are support groups for caregivers to people with these medical conditions. I know that the demands of being a caregiver can be overwhelming and I am not trying to heap a bunch of blame on you. However, please understand that I have heard horror stories about parents, siblings, and/or partners who were abusive and/or unwilling to try to learn what they were doing (or not doing) wrong. I know you did not ask to be “saddled” with someone with a disability, but we did not ask to be sick either.
Below is a video by Kristie Salerno Kent about living with MS. This is, in my opinion, helpful for explaining what having MS feels like when the symptoms are not visible. I have shared it with many others. In my opinion it is wonderful.
"The Show Must Go On" by Kristie Salerno Kent
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- MS and Fibromyalgia
My "journey" with MS and Fibromyalgia is about going through the diagnosis process and living with both "invisible illnesses. I am writing this in the hopes of helping others avoid the pitfalls that I stumbled across.