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Voltage gated potassium channel antibody associated limbic Encephalitis

Basti
  • By Basti
  • Posted May 17, 2009 at 6:52 am · 5 replies
  • In Introduce yourself
  • Shared with the public
  • Edited May 17, 2009 at 6:54 am
0 Recommendations

Hi,

My 63 year old stepfather has just recently been diagnosed wth having Voltage gated potassium channel antibody associated limbic Encephalitis. This started in November last year when he complained of a strange metallic taste in his mouth, strange smells which were not there, a feeling of a draught up the back of his neck and, in his own words, “blips”. These were electrical type pulses which he felt in his head. He would have up to a hundred a day. His memory was very bad, and the 3 hour journey by train from Derby to London on Christmas eve was anightmare, completely unaware of his surroundings and where he was going or even travelled from. He saw a specialist on January 2nd 2009, who immediately prescribed Phenytoin (originally 600mg reverting down to 450mg daily). Within days, he had completely changed personalities to an aggressive, controlling bully. This has been a living hell for the last five months, and just last week, they took him off it. (He has been hospitalised for most of this time, and still is) Within 2 days the change has been astounding, slowly reverting back to the same person he was 6 months ago. The "blips" and original symptons started also returning, but are being controlled by other drugs. I know it may be plausible that it is not related, but upon googleing the side effects of phenytoin, it says you can get phenytoin encephalopathy which have all the attributes of my stepfathers condition. Help! - has anyone else had or knows of this problem? Ian

Explore topics in this discussion:

Depakote Dilantin Memory Encephalitis Phenytoin Limbic encephalitis

5 replies

Joey_sMom

Paraneoplastic LE was a consideration for my son's encephalitis so I've heard about VGKC-Ab-related LE, but I know next to nothing about it.

Is your father being treated with IVIG therapy and steroids? Did they try a plasma exchange? To the best of my recollection, nobody else on this site has been diagnosed with this type of encephalitis.

Keep us updated on his progress please! It is helpful to hear about all the different kinds and their treatments.

Vicky
Caregiver

Basti

Hi Vicky,

I am unsure of the IVIG therapy, but yes he has had a plasma exchange and is also being treated with steriods and 20+ other tablets on a daily basis as well. We have been told my stepfather has an extremely rare case of E.
He is in Milton Keynes gerneral at the moment, after being transfered form the John Radcliffe at Oxford, And The QMC at Nottingham before.
I have spoke with him this morning, and he is still showing great signs of recovery, I am trying not to get too optimistic, just in case, but it is looking better.

Ian

IngridGuerci

Encephalitis itself is a rare disease and most doctors have never treated anyone with it but I have never heard of a case of VGKC-Ab-related LE. It's amazing that the doctors were able to diagnose him so fast. I see you live in England. You might want to contact The Encephalitis Society: http://www.encephalitis.info/

Ingrid/NYS
HSE 12/95 (I was 45 years old)

txvo

My dad at 70 was diagnosed the same thing as your stepfather--VGKC. His story was exactly like his- behaviors, then the anger, lashing out, bullying. It was a complete nightmare. He went on dilantin, which is phenytoin, because his levels were too low. But for a while, his levels got too high and his neurologist got him on Depakote. He has been well for over 2 years now. If you are ever in the US, you might want to inquire neurologists at the Baylor Medical Center and neurologists at the University Colorado Health Center who together helped identify my dad's condition and treated it. I wouldn't say he's cured but he's about 90% back to himself again. Good luck!

MyPatagonia

My father was also diagnosed with Voltage Gated Potassium Channel Autoimmunity with associated Limbic Encephalopathy (VGKC-LE) this year. The diagnosis has evolved to be Morvan's Syndrome - a very closely related, but even more rare, condition. I would like to know more about your father's story and I will be more than happy to share with you anything I know.

I imagine at Radcliffe you received optimal care? The Oxford people there successfully treated the first patients. We were treated by the Mayo Clinic, but they felt strongly that he should not be hospitalized for optimal care and to avoid infections.

Here is the good news: It is very likely that in time and with optimal treatment, the VGKC-Ab will disappear completely and that most, if not all, of his symptoms will also vanish. (This may already be the case for you.) At that point, your neurologist or medical team can taper him off of his immunosuppressants and likely a number of other medications as well. Proceed with extreme caution when tapering off of anti-seizure meds.

Here is the bad news: Every time your step-father gets an infection in the future, be it a cold, or flu, or such, his immune response will bring some or all of his symptoms back - depending on the severity of the infection. You will know when he is getting an infection based on his mental baseline.

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