Hoping for the best, while preparing for the worst.

LeeTR

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Hello!
My wife, Karin, began undergoing medical tests almost 2 months ago because it was noticed that she occasionally slurred her words. Initially, these included blood tests and an examination of her lung capacity. Then, several weeks ago, she had an MRI scan, requested on the understanding that it would be the first of several tests to either eliminate or confirm Motor Neurone Disease. This written request was sent digitally (something I remain unhappy about, given its psychological impact). Anyway, I’m sure I don’t have to tell anyone here what effect that request had. My wife didn’t really know what MND was, so she was knocked sideways when she began to read about it online. (I previously had scraps of knowledge, based on a few well-known cases.)

The MRI scan seems to have ruled out some possible causes of Karin’s symptoms, such as a stroke or Parkinson’s Disease, but she will have this confirmed at her next appointment with the neurologist. While she awaits the next test - an EMG - her psychological wellbeing is assaulted on a constant basis by stress that will no doubt be familiar to many of you. She needs my support more than ever before. And, that’s why I’m here.

In order to remain strong, while facing the prospect of losing the love of my life within a short period of time, I need to hope for the best while preparing (as best I can) for the worst. To this end, I’m trying to learn everything there is to know about this insidious disease.

Over the course of the next 6 weeks or so, Karin will undergo the necessary tests and interviews that should give us a clearer picture of the situation. During this time I would like to be able to communicate with people who have been through what Karin is going through, so I am better equipped to support her. While she may not, in the end, be diagnosed with MND/ALS, the testing and waiting is almost unbearable.

A little background info, as part of my introduction:
Karin is 54 years old and we have two daughters, (ages 13 & 16). Their nationality is Danish, while mine is British. We also live in Denmark, where I work as a schoolteacher at an international school.
 

LeeTR

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P.S. I have left out some details in my account, e.g. some of Karin’s other symptoms. I’ve done this partly for conciseness and partly because I completely agree with those who advise consulting with medical professionals. As I won’t be asking members of this forum for a diagnosis, some details are less relevant at present. Suffice to say, the medical professionals have initiated tests used in the diagnosis of MND and felt it necessary to inform Karin of the purpose.
 

lgelb

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Hi, Lee, sorry to welcome you here. It is a stressful time for both of you, and learning that MND was a possibility via a digital notice is certainly not the best way. Others will chime in, but as for supporting Karin, continuing to communicate to her that you will face whatever comes as a couple and a family is probably the most important. MND can seem like not only a death sentence but banishment.

Best,
Laurie
 

LeeTR

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Thank you, Laurie. I count myself lucky to love and feel loved. Karin and I have always tried to walk the walk as a couple. We tell each other how much we love each other and try our best to show it too. It will always be the case, no matter what happens.

Right now, I feel she is suffering from stress. Some of it caused by the way she was asked to go for this series of tests, but also because she had a difficult year at work, implementing huge changes that required everything she had. She has also been experiencing menopause and all the joys that brings. Furthermore, her symptoms haven’t progressed as I would have thought, were it MND - though I’m only a schoolteacher, not a neurologist! Karin relaxes somewhat when I tell her these things. I’m not trying to give her false hope; I really do believe it. But, am I guilty of wishful thinking? Only time, that seems to drag of late, will tell.

Karin will undergo a spinal fluid test and EMG on August 11th. She’s already had blood tests, a CT scan and various other tests. The result of all this will be discussed in a meeting with the neurologist on September 7th - a date I will remember, with either relief or dread, for the rest of my life.
 

Dot Nichols

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Hello Lee: I am very sorry you and your wife (and family) are having to undergo this process of resting, testing and waiting. That seems to be how this begins, but I hope in the end, you find it is not a degenerative disease. I think what helped us through the diagnosis was staying active and in close touch with family and friends.
 

KimT

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Hi Lee,

Being in the process of finding out what's wrong is scary and very stressful. I had more than one EMG before I got the diagnosis. It certainly was an up and down emotional rollercoaster.

I was a teacher. I taught business at the local college.

I've had some great experiences since my diagnosis, so life isn't over if she is diagnosed with a motor neuron disease. Having you by her side will mean everything.
 

LeeTR

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Thank you for your thoughts, Dot and Kim.

Karin was examined on the 11th August. It took two hours to complete, mainly due to the EMG, which was thorough. The results haven’t been made available yet.

A sample of spinal fluid will be taken at the end of the month. A meeting with the neurologist, to discuss the results of all completed tests, will be held on the 7th September. While I’m still fairly sure it isn’t MND, the waiting obviously remains stressful.

I’ll update if and when there are any developments. Thank you for reading this.
 

andrewf

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Hi Lee, this must be a very trying time. My father in law was diagnosed in June, nearly 2 years after he started slowly dragging a foot. He is 78. And while its considered an incurable disease, I told him of a man who was about 61 at work.....had a stroke and died and that was it. No time to get to enjoy, lights out. He reflected and said at least that didnt happen to him. And it beats dementia. I guess maybe the point is as lots of people on here point out, there's living left to do with ALS, not just hopping on the next iceberg. I wish you well, and, honestly, hope they simply find a treatable autoimmune or genetic basis, or other, for the ailments described.
 

LeeTR

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Thanks for the best wishes, Andrew.

Karin got the results of the EMG today. While there are still some unexplained symptoms that need to be re-examined, it looks as though it isn’t MND! The report is in Danish, but I’ve translated the conclusion (bold and underline is mine, to draw attention to the crucial sentence):

“Conclusion: during the nerve conduction study of UE, signs of axonal loss of the motor fibers in nn were found. n. peronei (most left) and left n. tibialis, while there are normal sensory conditions. In the EMG of the left m. tibialis anterior, acute and chronic neurogenic changes are registered, non-specific changes in the right m. extensor digitorum communis. Normal conditions in the right m. gastrocnemius and m. glossus.
The finding does not support the suspicion of motor neuron disease.
The patient is recommended to be clinically and paraclinically reassessed, including a review of the MRI examination and assessment by a speech therapist and an ENT doctor.”

We will obviously wait for the meeting with the neurologist, but it seems that there’s more than a glimmer of hope. Any happiness is tempered by the knowledge that there are many who aren’t as fortunate. My thoughts go out to everyone affected.
 

LeeTR

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So, the MND specialists at our local hospital want to keep an eye on Karin. She has to go back in 3 months for another appointment. She has mild "drop-foot" (it doesn’t look like it when she walks, but she struggles to lift her left foot) and she occasionally slurs her words a bit, so they think there might be a small chance of Primary Lateral Sclerosis (PLS). We'll just have to see how things go in the months ahead. She completes daily exercise routines, including her tongue, reporting some small improvements as a result. She also attends massage therapy and has started some new thing at the gym (can’t remember the name! 😊) Other than that, we continue and we hope. I’ll update again if/when there are any further developments.
Thinking of everyone in this community and sending my love.
Thank you for reading this.
 
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