Life with MS & EDS

December 5, 2008

Finding things online and the questions they raise

Filed under: Uncategorized — by mseds @ 2:36 pm
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Things are going well. I had a blood test to make sure this isn’t Lyme Disease and am still waiting for the results. I doubt the test will show anything, but that would be an interesting explanation for this.

A friend shared an old article by someone who had just been diagnosed with MS. It was back in 2001, so some things have changed. Parts of it were funny, so I thought I’d share. My experiences have been pretty different than the author’s. I only cried once (just after the MRI results came in). I don’t feel scared or depressed. I do worry a little whenever my feet or arms get that pins-and-needles feeling, but if you know how I sit, it’s probably caused by the normal reasons limbs “fall asleep” and I just need to uncross my legs or stop leaning on my arm in a certain way and things return to normal. I’m actually pretty optimistic that whatever drug I pick will help.

The thing that jumped out in this article is that she says, “There are some things I can’t do. Ever. Give blood and donate my organs. I try not to take it personally that no one wants that stuff anymore.” I’ve always been an organ donor and really believe it in. I’ve never donated blood because I tend to black out when giving my own blood for tests (rather low blood pressure will do that!) Does anyone know if people with MS can’t donate organs? I can’t locate anything about that online and wondered how accurate that was.

The other thing is that she cautions about what you read online. Yes, I think there’s a lot of negative and inaccurate stuff out there, but there are an increasing number of positive, well informed posts and for those I am grateful. I think it’s a matter of picking and choosing what you read, just like anything else online. Some of it is garbage and some of it is very worthwhile. I’ve found worthwhile sites, but am still searching for more good information from people with a positive attitude who seem well informed and I always try to validate “facts” before believing them.


Update: I called the neuro’s office and am still waiting to hear back from them about the blood test results. I’m taking this as a sign that there’s nothing to report. The trend the past few weeks has been that doctors themselves call first thing in the morning when results show something.

December 2, 2008

Diagnosis Basically Confirmed

Filed under: Uncategorized — by mseds @ 8:48 pm
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Well, the Neurology appointment was less eventful than I expected. He looked at my records and then we started chatting about my symptoms and history. It seems to be a good sign that my only symptom is the Optic Neuritis. I did all of the standard tests every neurologist I’ve ever seen does. This includes the standard drunkard tests (walk a straight line, touch your nose and then my finger, how many fingers do you see, etc.) He also tested my reflexes and that I almost kicked him seems to be a good thing. My strength seemed good, too, as I was able to keep him from pressing down my arms, legs, and feet. My vision was 20/20 in my left eye (I could read the tiniest print) and my right eye was only 20/40. That was pretty good.

I learned that the 1.7cm white matter is on the right side of my brain and that the other smaller ones are on the left. I asked if it mattered where the spots are located and apparently it doesn’t. None of them are near the optic nerve. I figured something would be near the nerve since that is where I keep having problems, but that isn’t the case. 

My husband (still not sure what to call him here, so I guess I’ll use his blog name, NothingKnew) came with and I’m very glad he did. It was good that we got to hear things at the same time and that we could both ask questions. The doctor said I could pick from my choice of 4 medications and he sent us home with an armful of materials from the companies. NothingKnew asked if I could switch medications after I’ve chosen one and apparently I can. We’ll go through the materials together and I imagine there’s a blog post or two to follow on them. I can’t wait to see how each one tries to win me over. Apparently there are no studies that pit one drug against the other. They’ve all be tested against placebos and none of the studies have exceeded 3 years. Three years seems to be the magical number beyond which it becomes unethical to keep someone on a placebo. 

My next steps are to get blood work done on the extremely off chance this is Lyme. I’ll schedule that tomorrow. I go back to the dr. next month to let him know which medication I want to use. He also recommended that I see a neurologist that specializes in MS since he’s only a generalist. He gave me the names of doctors at Jefferson and Penn. I chose the Penn practice and have an appointment there in MARCH! I guess it shouldn’t surprise me that they book that far out. 

Tips I picked up today:

  • Do moderate exercise, but stop at first sign of fatigue. Working through fatigue is good when you are healthy, but apparently a stupid thing to do when you have MS.
  • Get an MRI once a year.
  • The IV steroids only really help if started right away. If you want 6 weeks or so like I did and your symptoms have already plateau, it’s too late and there’s not evidence they are useful.
  • Waiting another month before starting treatment isn’t a problem, especially since I’ve already gone 7 years without medication.

Lesson Learned

Filed under: Uncategorized — by mseds @ 9:50 am
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My optic neuritis arrived right on schedule this year. Fall arrived and the weather got cooler and my vision got cloudier. Thankfully it was still only in my right eye. I can’t even recall exactly when it started. I was crewing at the Breast Cancer 3-Day in Philly in mid-October and I think I started to notice it then. By mid-November, things were a bit different than in the past. I had pain behind my eye. I don’t recall that happening before. Here’s where keeping a journal would have been helpful. (Lesson #1 – keep a journal or start a blog sooner!)

So, I called my regular eye doctor. The last time I saw him was 2006 when this happened soon after we moved back to the Philly area. I didn’t get an MRI back then, although I’m not sure why. I thought that the 2001 and 2003 MRIs were clean (I’ll get to that later) and I guess it didn’t occur to me that this cloudy vision problem could be something more serious than a seasonal inconvenience.

Last year I was so busy finishing grad school that I didn’t even bother to go to the dr. I’m glad I decided it was finally time to get this checked out again.

I called the eye dr. on Monday, 11/17 and got squeezed in first thing the next day. Many eye drops later the dr. confirmed that my eye looked great and that it was the nerve that was the problem. If it wasn’t for the nerve problem, I’d have better than 20/20 vision! So, he asked me to get another brain MRI. I called the MRI place and they’d have taken me that day, except my eyes were too dilated to get there. So, Wed. morning, 11/18 I went off to get pictures of my brain. Wow I had forgotten just how loud those machines are! That night my husband got me a thing of Ben and Jerry’s and Frito’s and we waited. What’s better than Phish Food when stressing?!?

The doctor’s call came around 8 something Thursday morning, 11/20. He confirmed that I have “white matter” (which I’ve decided I much prefer to “brain lesions!”) in my brain and that it is almost definitely Multiple Sclerosis. I had done some research that week and learned that optic neuritis usually (but not always!) turns into MS within 7 years or so. It also tends to affect females more so than males and comes on between 20 and 40 years old, frequently after some kind of hormonal change (within 6 months after a pregnancy, for example!) or other major event. It tends to affect those in temperate climates with Northern European ancestry. There seems to be a genetic predisposition, but it’s something else that brings it on. There’s a belief that Vitamin D deficiency (lack of sun light) plays a role. Go figure that I try to avoid skin cancer and end up with an auto-immune disease!

So, the risk factors and my symptoms all point to MS. There doesn’t seem to be anything else that this could be. I called my family doctor that morning and, just like the others, he could fit me in that morning. It seems to be a sign of something serious when everyone is willing to see you right away! (Lesson #2 – the faster doctors are willing to see you, the more serious things are.) He recommended the name of a specialist. I’m seeing a neurologist today (that’s equivalent to a right-away date for neurology) to find out what to do next. We need to decide if I want to do IV steroids to clear the eye up faster (I’ve always declined this in the past) and I also need to find out what medication(s) they want me to take. Unfortunately they are all shots!

Friends Help

Talking to my husband’s friend down in MD who was diagnosed with MS around the time I was first dealing with optic neuritis helped calm me down and put things into perspective. The amazing brownies she sent me really helped, too! She even sees the same neuro I did. It sounds like I’ll have to give myself needles every day or week (depends what the dr. prescribes), but that they can significantly slow down the progression of MS and even reduce the white matter. That was encouraging. Although the thought of needles freaks me out, I’d take that over chemo any day.

Biggest Lesson(s) Learned

Over the past week I did manage to track down my 2003 MRIs (Maryland only keeps medical records for 5 years, not 7 like PA), so I have those for comparison. I think it’s neat to look at the brain images. The white matter is definitely visible on the new images. I have no medical training, so I don’t know exactly what I am looking at, but there are white spots on the new pictures that are not on the old ones. I was showing Big Sister the brain pictures without pointing out the spots. She wasn’t as interested in them as I was and thought it was kind of creepy to see what is inside of a person’s head.

The bad part about having received the old medical records is that I got to see the report for the first time. It clearly said I had MS and this was back in 2003. The report was very short and didn’t specifically mention where the white matter was, but it did say things were “unchanged from 2001”, so I likely had MS back then. I don’t ever recall my old neuro saying, “you have MS.” I remember the discussion completely focusing on the optic neuritis and that the brain MRI looked “fine.” I’m pretty angry that he didn’t clearly say, “come back after you’ve had your baby and we’ll chat again,” or something like that. I never would have waited 5 years to get another MRI! (Lesson #3 – always get copies of reports for yourself!) (Lesson #4 – if you have optic neuritis, get more frequent MRIs since there is a chance it could be caused by MS and the sooner you can treat MS the better!)

Not Telling the Girls

If you are ever around our girls, please don’t mention anything in front of them since we are not telling them it’s MS. Big Sister is high strung and too emotional to begin with and wouldn’t be able to handle it and Little Sister is too young. We’ll tell them when they are a bit more mature. I know that the MS Society has some great materials for kids, but they talk about gross and fine motor problems that I don’t have and we don’t want the girls to be concerned about things that may not happen for a long time. They know something is wrong with my right eye and that I’m seeing doctors for it and we’re leaving it at that.

What’s Next?

Between the Ehlers-Danlos diagnosis and now MS, I’m feeling genetically screwed! This has been a lot of info to take in during the course of less than 6 months – too much to really digest.

I hope to get decent news from the neurologist today. Thankfully there are much worse things to have in life than MS, so things generally look very promising.

December 1, 2008

Looking Back

Filed under: Uncategorized — by mseds @ 10:36 am
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In April 2001, Big Sister was born. Being the good new mommy that I was, I got my first flu shot that October. She was too young to get one, so I did. Very soon thereafter, the vision in both of my eyes was off. Things got strangely cloudy and my peripheral vision seemed to be gone. Both eyes were affected, but things were worse in my right eye. Thankfully I still didn’t have a driver’s license at the time (I was still a city girl back then only recently having made my way into the ‘burbs), so it wasn’t a huge inconvenience, just very annoying! I went to the standard eye dr. we saw at one of those mall-type places. She sent me to an ophthalmologist that could do more tests. That guy wasn’t able to get my vision to 20/20 and seemed concerned, so he sent me off to a neuro-ophthalmologist, Dr. Katz. After traveling around Rockville, MD with my husband and 6 month-old, I seemed to have arrived at the right place.

Dr. Katz did a number of tests, including a field vision test (stare at the center of a big machine and click a button whenever you see a spot of light appear), a color vision test (there were numbers on there?), a visually evoked response test (I don’t remember this one well, but it was lots of black and white geometric shapes changing around), as well as a variety of strong eye drops that made all of the hazel around my pupil disappear for quite a while. I also had to follow around an eye drop bottle that had a red cap or was it a sharpie marker? It was 7 years ago; I suppose it is okay that the details are a bit fuzzy.

After all of that he sent me for an MRI. He said it was likely optic neuritis (ON). I saw Dr. Katz again when the results came back. He said there was “no evidence of any demyelinating disease” (whatever that meant) and that the optic neuritis was likely a less than 1% chance of a flu-shot side effect. He said to come back if it happened again.

I don’t know how long it took for my vision to improve, but I’m pretty sure I was seeing clearly by Big Sister’s first birthday. I think the ON came back that fall, but only in my right eye. I can’t remember exactly what happened that year. I was still pretty sleep deprived.

In 2003 I went back to Dr. Katz. This time he was up in Germantown, MD and I finally had my driver’s license. He did the same batch of tests. I clearly remember sitting out in his parking lot for over an hour before I could see again to drive home. I had another MRI done and saw him again after the results came in. He said the MRI still didn’t show anything and still thought it was potentially related to the flu shot. He had seen some other people from that batch of flu shots and thought perhaps there was a connection.

This time I was trying to get pregnant, so we decided not to do any treatments for the ON. I had passed on the IV steroids the last time and really didn’t want to do them this time, especially while trying to have a baby. He said that symptoms during pregnancy usually decrease anyway, so he agreed with waiting things out.

So, that was that. The words Multiple Sclerosis didn’t come up. There was no indication that I had MS. I’m glad I passed on the treatments because I became pregnant very soon after seeing him and had Little Sister in July 2004.

Every fall the optic neuritis could come and eventually go in my right eye. It never did happen again in the left eye and it never was as bad as the first time in 2001. Yes, I thought it was strange that my vision got cloudy every fall, but I could see through the clouds and wasn’t worried. Whoops….

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