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First Name
Folkert

Last Name
Veenstra

City
Welshpool

Country of Residence
United Kingdom

Health Interests
Hormonal and metabolic disorders, Kidney and urinary tract disorders, Mental health disorders, Neurology (brain and nervous system), Palliative and end-of-life care

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Posts (7)

Sun, Jan 6 3:40am · Chronic Fatigue Syndrome and Temporary Paralysis? in Just Want to Talk

Chronic fatigue and temporary paralysis sounds really like a muscle disease called primary periodic paralysis. There are unfortunately only a few neuromuscular specialists who are very interested in this disease. You can find a lot of information on http://www.hkpp.org and www,periodicparalysis.org. There is a lady called Jaya Trivedi in Dallas, TX who has excellent knowledge about it. Although Mayo has got an excellent reputation in general, I have not heard any great experiences of other patients with primary periodic paralysis.

There are multiple Facebook groups out there about this condition too,

Oct 3, 2018 · Possible Ehlers-Danlos Syndrome with craniocervical instability in Bones, Joints & Muscles

Paolo Bolognese, neurosurgeon in New York, has got a specialist interest in this area and is highly recommended for people with CCI and hypermobility.

Sep 26, 2018 · Periodic Paralysis or Hypokalemic Periodic Paralysis? in Brain & Nervous System

Hello Teresa,

It goes really up and down. Without the medicine Keveyis (dichlorphenamide) I get very unstable and it is not a condition wherefor you can go to each hospital either. I know from many others their experiences that Mayo Clinics are for example not specialised enough to treat this condition.

In the USA there are for example specialists in Dallas, TX, Rochester, NY, Boston, MA and Baltimore, MD. The problem is if you don’t go to one of the top specialists, that it gets easy misdiagnosed.

Mar 7, 2018 · Periodic Paralysis or Hypokalemic Periodic Paralysis? in Brain & Nervous System

My first symptoms were very minor, as in problems with handwriting after writing 1 or 2 pages and sometimes some unexplainable falls due to muscle weakness.

Mar 7, 2018 · Periodic Paralysis or Hypokalemic Periodic Paralysis? in Brain & Nervous System

The whole process of getting a diagnosis after my first symptoms took more as 30 years. It is important to see the right neurologists. You might be at one of the best hospitals, but that won’t mean anything when you don’t see that neuromuscular neurologist with a special interest in Periodic Paralysis.

I am for example active member of the following Facebook groups: Hypokalemic Periodic Paralysis Network, Periodic Paralysis Network Support Group, Periodic Paralysis NUT-works and there are quite a few other ones. Each group is slightly different.

Mar 6, 2018 · Periodic Paralysis or Hypokalemic Periodic Paralysis? in Brain & Nervous System

I have got hypokalemic periodic paralysis myself, because of that I read a lot about muscle channelopathies and I share my knowledge through Facebook groups together with other people with periodic paralysis.

Mar 6, 2018 · Periodic Paralysis or Hypokalemic Periodic Paralysis? in Brain & Nervous System

Dear Amber, I would suggest to get in touch with the Periodic Paralysis Association and ask their experts for advice where to go. There are plenty Facebook support groups for patients with primary periodic paralysis.