Wednesday, July 17, 2013

Here's what is it like to have Multiple Sclerosis & Fibromyalgia and how it effects me physically

(Yvonne Decellis, Columnist, MS News Channel)
This is from my upcoming book, It Isn't as Bad as it Sounds (my life with MS & Fibro) My exacerbations (MS attacks/flare-ups, etc.)

What is it like to have Multiple Sclerosis and Fibromyalgia (in other words, how will it effect me 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, once again, 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 MS Attacks and Flare-ups) 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 for the evenings. He was about 40 minutes away by car (about 90 minutes by train.)

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. Real caring boyfriend, eh? That alone 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 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 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 pink-eye 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. As I stated in a different section, I was told I might have a brain tumor. Apparently our attacks can 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 very 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. After seeing my PCP and then being sent to an eye doctor who specialized in people with Neurological disorders, I was told 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 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 me and my mother, and then made himself 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 Neuro (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 both me and my mother 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 would 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 first Neurologist coming to terms with it was much harder than it needed to be.

Thankfully, I found a very good Neurologist next (unlike any time when I speak negatively about someone, if I have a positive experience to report I will use their real name. My first good Neurologist was Timothy Vartanian.). 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. The Neurologist I went to was in the same hospital, and when our appointment came to a close he told me I could come back to him or go back to the first Neuro I saw. 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” that something like this attack happening would be too “far fetched” to offer as an example of what I should expect to face.

Dr. Timothy Vartanian remained my Neurologist for a few years. I absolutely loved having him as my specialist. Unfortunately, he became very popular (and he was also very involved in doing research work 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 the hospital and I followed his progress. What impressed me about him most was how he used exercise to help him 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 exercising and healthy diet. It definitely didn’t cure me but eventually made me feel much better both physically and psychologically. I am going to include a section about ways we make our quality of life (QOL) better so I will go more into my exercise/diet regiment later.

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 - another doctor I wasn’t wild 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. I soon disagreed with them both on behalf of myself and my husband.)

I should have gone to see my Neurologist or at least tried to contact him first but 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 started 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 Neuro. I eventually decided to take matters into my own hands and I made an appointment to see my neurologist. Thankfully, Dr. Vartanian 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 couldn’t understand why the doctor refused to consider that I was having an exacerbation.) 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 – that’s a pretty hopeless sensation.)

For my next attack the Dizziness came back with a vengeance and I couldn’t hold anything down (liquid or solid). I was at the new hospital with another good MS Neurologist. I was put on a steroid treatment for the flare-up – it was called “Prednisone”. Unfortunately, it didn’t help me much at all. The only thing that helped with the vomiting was the Meclizine pills and time (and learning that drinking water just makes things worse when nausea is a problem. This was something I did not know.) This “bout” lasted about 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 – 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. (although I find the biggest problem is having to deal with the way others view me. The way other people are towards people with invisible disabilities is a battle that never goes away.)

As with every attack I have had, I had left over side effects 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 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.