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New diagnosis

Posted: Sun Jul 28, 2024 8:29 am
by Johanna
New Joiner Here. Have had minor RLS symptoms for about 20 years but no diagnosis. 4 Months ago ended up in hospital with stroke-like symptoms of numbness in left arm, part of torso, face and tongue. Was told I had the best “bloods” for an 85 year-old they had seen for a long time. Discharged myself as we were having a really bad winter with flu’s and after severe RSV last year did not want a recurrence. Two months ago had a severe attack of what was then diagnosed by my GP as RLS. Meds subscribed is Pregabalin 75mg. Fantastic nights’ sleep and after trialling meds times, sleep 6 hours without waking/symptoms. Wake at 6am with severe symptoms which abate somewhat when moving around. I’m in very good health for my age, good “bloods” taken again 2 weeks ago. Walk the dog twice a day for approx. 40 mins. The last week or so suffering from depression and dull headaches and can’t seem to lift out of it. GP tells me these are side effects which will lessen over time. Hope this makes sense. Would be very grateful for any suggestions. Thank you.

Re: New diagnosis

Posted: Sun Jul 28, 2024 5:22 pm
by Polar Bear
My understanding is that although you have had minor RLS for 20 years, you were officially diagnosed 2 months ago and prescribed Pregabalin 75mg. You are now getting 6 hours sleep without waking. This is pretty good sleep for an RLS sufferer though we would always hope for more.
To awaken at 6am with severe RLS symptoms it is possible that the benefit of the Pregabalin has worn off.

Your 'GP is more that happy with your blood results. However, has your GP checked your Ferritin Serum level, This is very important and is not part of a standard blood check. It needs to be specifically requested. Us RLS sufferers need our FS to be up around 100 and we should know our number. Not just accept being told that it is 'normal' which can be anything from 20+.
One of the most common causes of restless leg syndrome is low iron in the brain. This can be estimated, to a fair degree, through ferritin serum level testing in the blood. Low levels of ferritin indicate a state of iron deficiency and iron supplements (or infusions) may be needed to increase the brain iron

You say your GP advises that your depression and dull headaches are side effects as a result of taking Pregabalin, but you do say that this has only been for the last week or so. Therefore you were taking the Pregabalin for nearly 2 months before these side effects showed themselves. Is your GP easy to talk to. Take a look at the document linked in my signature. This has been prepared by the most esteemed of RLS Experts with regard to treatment. It is easy to read and can be very useful for discussion.