My wife has recently been diagnosed.

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LeeTR

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After some suspicions that my wife, Karin, may have ALS, the neurologist dealing with her case has now confirmed he thinks she does. However, she has had these symptoms for more than a year and not shown much sign of deterioration, thankfully. The neurologist also thinks this will most likely continue, with only small changes over years.

Karin started taking Riluzol today and she will be put forward to take part in Danish trials of new, experimental drugs, if/when the opportunity is presented.

I’ve had a couple of days to come to terms with the diagnosis. Now I want to prepare for whatever comes next.
 

Nikki J

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I am sorry it turned out this way after all. It sounds like she is in good hands. I am a slow progressing person as well. My diagnosis came quicker but after 6 months my neurologist predicted a slow course and she was correct. Hoping for the same for Karin

should she care to set up an account and join us she would be most welcome
 

LeeTR

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Learn about ALS
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Thanks, Nikki. I’ve mentioned to Karin that she would be welcome on the forums and she replied that she doesn’t feel ready yet, but she will consider it in future. She is currently in the process of informing those who should know, which is emotionally draining.

Please can I ask more about your experience? At this stage, it sounds as if Karin may have a similar case. How did the disease initially present and how has it progressed? I know it will be different for everyone, but there may also be similarities. Also, please don’t feel obliged to answer; I will understand.
 

Nikki J

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Best wishes to Karin. Telling people is hard. Often you end up supporting them instead of vice versa.

I started with leg weakness. It remained in one leg for several years. Then went to the other leg and arm within months and the second arm a year or so later. I have had extended plateaus I should say that my neurologist considers me highly unusual. I was also told by a neurogeneticist that he believed there is an ultraslow variant of my genetic mutation.

speaking pf genetic mutations has Karin been tested? My mutation is commonly seen in northern European populations. I believe about 40% of Finnish PALS have it. The rates are lower as you get further away from there but still high in the UK for example. I don’t know Denmark but suspect also high. The working theory is it was spread by the Vikings. Knowing might not change anything for her but good for family to know
 
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