Tag Archives: neurologist

Going to Mayo

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We just found out today that Michele’s neurologist has made an appointment for her to be seen by a team of specialists at Mayo Clinic in a few weeks. This is something we had thought about pursuing eventually if we didn’t get answers, but it comes as a bit of a surprise that a.) her doctor recommended it without prompting from us and b.) an appointment was available so soon for her to go to Mayo.

It’s good news, so why do I feel somewhat upset? One reason is that Michele and I had really hoped, and prayed, that we would have something more solid to go on after today’s appointment. The appointment at Mayo Clinic means that we aren’t much further along in terms of a complete picture of what is wrong with her body. It is almost like starting over again and that is discouraging. Another reason for concern is how we will manage it in terms of someone babysitting the children while we are gone for several days, and the additional cost of the treatment at Mayo.

Discouraging illness

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I haven’t mentioned much about this but Michele is sick again with the same condition she had when we lived in Indiana about 1 1/2 years ago. Her symptoms have reappeared in force and most days she isn’t able to do a whole lot. She has to walk around most of the time with a cane in order to keep her balance. Sometimes the only thing she can do is lie down and wait for the shaking/twitching/jerking symptoms to subside.

This is discouraging for a number of reasons and we are uncertain about how we’re going to cope. The main thing about this that’s discouraging is that last time, Michele’s symptoms, which lasted for several months, gradually disappeared. We hoped they had disappeared for good. Obviously, that’s not the case. It’s also discouraging because as yet we have no more information about what is causing her symptoms than we had previously. Her symptoms closely match common symptoms for Multiple Sclerosis, but it doesn’t mean that’s what she has. She is basically in a period of re-taking all the same kinds of tests she had before (e.g., EEGs, MRIs, blood tests, urine tests, etc.). She has a further appointment with her neurologist this week and we hope to have something more definite to go on in terms of diagnosis after that. We feel good about her doctor and his approach to her condition.

And then there is the fact that yesterday we discovered red spots all over Brinley’s body. Yep, she has chicken pox. So far she hasn’t been acting all that sick, which is good. Yesterday we also learned that my father-in-law has chicken pox, too, at 60 years of age!

No answers, yet

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Michele writes the following about yesterday’s visit to the neurologist:

I went to the doctor today and there is not a lot of new information. My blood tests are elevated but only
slightly. This is good and bad, if they were drastically off then it would be clear what the problem is but because they are only slight it is hard to determine a specific cause.

The dr. ordered a Lyme Disease Titer and I had that drawn today so hopefully in a few days we will have a better idea if it is Lyme Disease.

The dr. feels that there is a possibilty that it is Wilson’s. She wants me to see an opthamologist to have a slit-lamp test (from searching the web, it looks like the regular eye exam light they use to check the interior of your eye, the thing you rest your chin in and press your forehead forward) to check for Kayser-Fleischer rings around my corneas. These are rusty brownish green deposits around the colored part of your eye that are indicators of Wilson’s Disease. As soon as I am able to get the tests done
we may be able to eliminate a few diseases!

So, no answers, yet, but we feel like we may know more soon.

Latest news about Michele (Updated)

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Our saga continues…Michele is still not improving and I am still at home just about every day to help with the little ones. We got a call from her neurologist’s office earlier today, requesting that we come in for another office visit next Wednesday morning (May 11). We’re not sure what this will be about. We were told that they had blood test results, but we weren’t told what those results were. We used this opportunity to specifically request a blood test for Lyme Disease. We don’t know if/when that will take place.

So in short, we’re still waiting for answers. It is really, really discouraging to wait weeks and weeks without any answers and more questions all the time. Such as, how long can we do this? How on earth am I going to be able to do my job? Will I even have a job at this rate?

We also feel intensely alone and isolated because of Michele’s ill health. We are very appreciative of the meals that some have made for us and the prayers of many, but we are struggling with deep depression and anxiety right now. Every day is a huge struggle. I know that may sound overly dramatic, but it is true. I have never felt more uncertain about [and disappointed by] so many things in my life: faith, health, finances, job, relationships, church, emotions, you name it.

We have confidence that God is working through our circumstances for our good…somehow. It is very hard to not feel doubt and hurt, though.

[I neglected to mention that all three of our younger children have had colds for over a week now, which makes them even more crabby and needy for attention than they usually are. All four of them know something is wrong, that we are upset, and they "act out" without really knowing the cause. E.g. Brinley has temper tantrums several times a day, Tristan listens and obeys even less than before, and Cohen has turned into a very aggressive (hitting, kicking) little boy. Keegan is also struggling. Michele and I feel a lot of guilt about all of this.]

Lyme Disease is a possibility

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Last week Michele was doing a lot better for several days, and we got our hopes up that there was healing taking place. However, her symptoms returned on Friday. Saturday she had a fairly good day, yesterday, not so good. Today, also, she is somewhat weak and shaky.

We are going later today to have more blood taken for additional tests ordered by her neurologist. Michele also has a 48-hr. EEG scheduled for May 23, which will require an in-hospital stay. We will be talking to her neurologist again later this week.

One thing that a number of people have told us to do is to verify with the doctor whether they have tested Michele for Lyme Disease (see http://www.cdc.gov/ncidod/dvbid/lyme/). Apparently Michele’s symptoms mirror those of people who have had this disease. One website we have consulted lists dozens of symptoms and says that if someone has at least 20 of the symptoms listed, there is a high probability that that person has the disease. Michele identified 39 symptoms from the list that she has experienced. It gives us some hope that this might be the answer, but we really don’t know until/unless tests are done.

Most days I am staying home and trying to do work remotely when I can. We continue to appreciate the inquiries and prayers of many.

More good days for Michele

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Michele has felt almost normal for several days now. (This afternoon I came home from work at her request because she wasn’t doing very well, but she’s better this evening.) This is great! We really feel the effect of many prayers on her behalf and hope this better situation will continue.

Earlier today we heard from her neurologist’s office that the blood tests she had last week came back as “borderline,” whatever that means. They are ordering more blood work to be done.

Adventure to Carmel

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We just got back from our trip to the neurologist in Carmel (a northern suburb of Indianapolis). It was quite an “adventure.” We left the house in plenty of time but with an almost empty tank of gas and no real clue as to the exact location of the doctor’s office. The appointment was scheduled for 10a but we had arranged to meet my mother and Britta, my eldest niece, between 9:30a and 9:45a so that they could take the kids to a park while we were at the doctor’s office.

We got to the general vicinity in plenty of time but for the life of us could not locate the doctor’s office. We spent 40 minutes driving around looking for it and tried several times to reach the office by cell phone. There was a constant busy signal so we couldn’t get through. This whole time, the van was driving on fumes and I was anxious that we would be stuck by the side of the road somewhere. Plus, we were worried about my mother and Britta waiting for us, wondering where we were.

Sigh. Such is our life. We were quite stressed out by the time we were found by Britta, who guided us to the right location. We were told by the attendant that since we were a half hour late for our appointment, the doctor could only see Michele for a short time.

In spite of apprehension about going to all this trouble for nothing, we were pleased with the doctor’s visit. She seems to be genuinely concerned about Michele’s condition and asked lots of questions and did a quick examination.

One mystery that she cleared up for us related to our understanding from Michele’s regular doctor’s receptionist that the MRI showed nothing. Fact is, it confirmed what the CT scan showed, which was described as a dark or obscure area in Michele’s brain. I have no idea why we were told that the MRI showed nothing. The neurologist believes it is a cyst or dead area that Michele may have had since birth or at least, for a long time. She doesn’t feel it is dangerous. She didn’t rule out the possibility that it may be growing and may play a part, but she thinks it’s doubtful. It is located in the basal ganglia on the right side of Michele’s brain. She will monitor it over time.

The neurologist ordered some more blood tests and also scheduled a 48-hour in hospital test that is basically an EEG given over a long period of time, including during her sleep. She also scheduled Michele to be seen by a neuropsychologist since Michele mentioned some memory problems as one of the symptoms she’s experiencing. This person will help determine which area of the brain might be affected.

The upshot is that we do not have any significant answers yet, but we weren’t expecting to have any. The doctor told us that Michele’s symptoms could be caused by a wide variety of things, even something as weird as a particular kind of virus or an undiagnosed strep infection. We just have to wait and see what these further tests will tell us.

After the doctor visit, we met up again with my mother and Britta and went to a nearby park to have a picnic lunch. It was in a beautiful location overlooking a little stream in a wooded area. Britta is getting ready for her upcoming wedding in about a month. It was great to see them.

MRI results for Michele

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A few minutes ago we learned that the MRI results from last Friday are negative. That is, nothing concrete showed up to explain the “dark or abnormal area” shown by the CT scan. This is good and bad. It is good because maybe it rules out something significantly wrong in Michele’s brain. It is bad because it leaves us uninformed, still, about the cause(s) of her condition. She and I have mixed feelings right now. Next up is her appointment on Tuesday with a neurologist.

Neurologist appointment for Michele

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We just got a call telling us that the earliest Michele could see a neurologist is April 19. That’s almost two weeks away! Disappointing.

Michele’s dad left earlier today to go back home. Mom will stay through the weekend. Fortunately the weather is beautiful right now and the kids are loving it. They are playing outside under Grandma’s supervision while Michele rests and I try to catch up on some work things, paying bills, helping to clean up — all the daily things that have had to be set aside. I’m feeling a lot better and am now able to eat things.