Thursday, August 15, 2013

My Column today is a chapter from my upcoming book: "IT'S NOT AS BAD AS IT SOUNDS: My life with MS & Fibro"

Yvonne Decellis, Columnist,

My exacerbations & experiences

What is it like to have Multiple Sclerosis and Fibromyalgia (in other words, how will it effect 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. I am NOT a medical professional.)

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”. It is possible to have an MS attack without knowing it’s happening, I believe). I will start with my first health issues that lead (eventually) into the first attack that I had.

It was the middle of 1994 and I was dating someone who didn’t appear 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 having trouble breathing one day and had no idea why. 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. Real caring and supportive boyfriend, eh? I guess he had things to do that were more important to him than I was - I suppose that this should have made me tell him things were over between us. Then again, only seeing each other on the weekends after two full years (along with me having to meet him at a club, spending a night with him and then having to take a train home even though he had a vehicle of his own) got pretty stale too. 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, 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 that nobody appeared to know 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 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 good year.

Approximately a year later (towards the end of 1995) 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 specialized 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 another test called “visual evoked potential” after my doctor told me he suspected MS based off of the MRI results. I was then 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. I had asked this Neurologist (while my mother was with me) to give me an example of what an attack was like. He used a very bad example (kind of 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 before – 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 attack), coming to terms with knowing her daughter had it was much harder than it needed to be.

Thankfully, I found a very good Neurologist next (My first good Neurologist was an MS Specialist at the Beth Israel Medical Center in Boston). 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, 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 very popular (and he was also very involved in doing research on MS) and was, therefore, very hard to find/see so I would up eventually changing doctors and hospitals.

Montel Williams was diagnosed in 1999 and he had a Neurologist at Brigham and Womens’ Hospital (BWH). I was also told he had given some money to Brigham and Women’s Hospital and I followed his progress. 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. It definitely didn’t cure me but 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 difficult to describe attack. It happened on a bus-ride to work. I got off the bus and suddenly felt like something was dragging me off to the left side. 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 yet 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 me and my husband, 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 I had to go through my primary care doctor first to get a referral. Unfortunately, my PCP refused to believe there was anything wrong with me, even after I was diagnosed with Multiple Sclerosis. He (my PCP) acted as if he thought I was 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 asked if there was any possibility I could be pregnant. I was tested for this and was able to verify that I was not.)

My PCP refused to do anything beyond this and he also wouldn’t 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 my neurologist on my own. Thankfully, my Neuro took what I was going through very seriously. He told me I was having “classic MS attack symptoms” 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 (also known as Meclizine) to control the dizzy feeling. The phrase ‘the room is spinning” is not one I can take lightly after having gone through this experience. It was awful. When the room is spinning and all you are trying to do is lay in your bed and fall asleep it is a pretty hopeless sensation and situation.

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 a 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.

By the way, I am aware all of the “differents” in the previous sentence. It is no wonder to me that there is no “cure” yet when there is so much variety with this condition (patient to patient, day to day). 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 vomiting. This was something I did not know at the time of this attack, unfortunately. 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 completely numb (and this did bring back the memory of what that first Neurologist told me. Despite everything I had been told about having such a “mild case” of MS, I couldn’t help but wonder what would happen next.) This was a major problem for me because I am left-handed so I was unable to write. Thankfully, the numbness remained ("only") in my left arm and my left side did not become “paralyzed” as I feared it might. One of the biggest problems with having a disease like MS is not knowing what is going to happen next.

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 laid off and losing a member of my family) to find out I also had Fibromyalgia. It is possible that I did not have Fibromyalgia until much later.  What the MS and all of the medications did to me (in addition to the stress from being burned out of my home and then being laid off a year later) may have led to me developing the Fibro “syndrome”. I do not know if I will ever know what caused it or when it developed, however.

Bear in mind, however, that the biggest problem with having an “invisible disability” can often be the way others view and/or treat us. The way people act towards people with invisible disabilities is a battle that never stops. It is very frustrating and unfair that those of us who have these health problems have a constant “uphill” battle to fight to 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 book you may not need this but perhaps you can share it with anyone who does): 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 am not trying to heap a bunch of blame on you but 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.