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There is light at the end of the tunnel!
Hey guys!
I know I shared an article from The Mighty yesterday, but I found another one which I think many of us can also relate to!
The article “What I Found at the End of the Tunnel on My Search for a Rare Disease Diagnosis” was extremely relatable for me.
After being diagnosed with Lambert-Eaton syndrome, I felt relief to finally have a name for all the problems I had been experiencing for the last year. It was relieving to know that someone had listened to me enough, took me seriously and took the time to find out why my body was suddenly hijacked and who the hijacker was.
How did you feel after your diagnosis of Lambert-Eaton Syndrome?
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3 Replies
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My daughter has had diabetics for 45 years and now has LEMS. I have a question. Her blood pressure when laying down is 140 over 85 and standing up it is 70 over 50. Is this something that is related to LEMS and how can it be managed?
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Hey
@alexkahn
I would definitely check with the physician that manages your sister’s LEMS, however to me, that sounds like dysautonomia, a dysregulation of the autonomic nervous system. Dysautonomia is common with LEMS and diabetes and can cause neuropathy to our autonomic nervous system. I’m sure this may be new information for you, so you should check out Dysautonomia International’s page it has a lot of information on the different types of dysautonomia and the symptoms each type can cause.
Hope this helps and don’t be afraid to reach out if you have another question!
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Thanks Ashley
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