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PNHE Site is up and running RicktSydney Australia

MomoMy Neuro has avoided giving me Phenytoin he said because of the side effects Have been taking Gabapentin for about 18 months dose is 3 X 400 mg 3 times per day.No noticeable side effects other tan some weird dreams.Rick Sydney Australia

Hello NewbieYour description is also in keeping with Isaacs Syndrome this is a normally a benign Autoimmune Disease it would be worth while searching Neuromytonia and Peripheral Nerve Hyperexcitability as well all used to describe this Syndrome.RicktSydney Australia

G'day CAM 1516Firstly, I agree with your comments about the Creators and Administrators of this site - it's very informativeI was diagnosed with Isaacs Syndrome / Neuromytonia you could also call it Peripheral Nerve HyperexcitabilityOn the subject of Botox - I have been treated with Injections...

Greetings Medical studentWhile you were searching I am supprised you did not come across anything about Isaac Syndrome/Neuromytonia .RicktSydney Australla

I get cramps too. But I usually forget to hydrate myself since I am breastfeeding. I do feel slightly better after I drink more water ordrink vitamin water or gatorade. And one of the nurses told me even if my electrolytes blood tests shows normal range... you could still have...

I want second Krackersoness comments about the site his words reflect my thoughts completely.Great work to all involved.ricktSydney Australia

KrackersonesNo the Plasma Exchange is not painful no more than the needles going in. Yes I am considering trying it again. I am lucky with the cost because it is covered by our Medicare System and was free.An Autoimmune Condition was indicated in my Lumbar Puncture.Rick Sydney Australia.

Duke 11Yes, I am back. Since I have returned I have been going down hill for the past few weeks.Fasciculations everywhere cause lots of stiffness all over. Like a dog with a hundred fleas and don't know where to scratch maybe my medication is wearing off. Just don't know.Anyway, the Plasma...

PrayMantuslI am taking Neurontin ( Gabapentin) 1200 mg three times a day = ( 3600 mg) maximum dosage I have been taking this since last February. The only side effect I can notice is some strange mixed up dreams and some memory loss - not enough to effect my life and functions. I also take...

Duke 11What's next ? I would give plasma exchange a go - it's not that uncomfortable - it's well worth a try. Your 80% sounds good - can you tell me your current medication regimeI am still looking for that silver bullet that will give me some more reliefI wish I could work out 5 times a week -...

JroYes, Diagnosis makes all the difference plus having a Doctor that does understand and sees more than what is just on the surface. He certainly does know what's going on - he is a Guru as I have said before. You certainly need a reasoned response. Because your Doctor can't see it he does not...

KrackersonesI had the buzzing and vibrating you refer to however - I would describe it more like electricity running through my body mainly at the base of my skull my wife could feel it by placing her hand about and inch above my spine in my neck but it could be in other places in my body and I...

Krackersones - Greetings again.When our small group of Isaacs Suffers got together on the weekend we discussed Tegretol.One had a bad skin reactions the other had very quick pain relief but stopped taking it after about a week and a half because of tiredness and mood change.He is thinking of...

Krackersones Hello againI am more inclined to think my first first EMG readings were miss read which I understand can be common with Isaacs/Neuromytonia.Not sure about the variation in Lumbar Puncture/ Spinal Tap.I'm sure teaching 11/12 year olds keeps you on your toes.My research on Tegretol...

KrackersonesHello again, your medication Klonopin I think I would be concerned about the long sedation and long term addiction even though you seem to have a decent lifestyle how long can it last on this? You are pretty you so you have to look at the long run.I am going to stick my neck out here...

KrackersonesGreetings from Australia. I started on Tegretol in May last year - first with Normal release - this gave me pretty quick relief from the the severe pain in my calvesIt was so bad the pain would bring me to tears. I changed to Controlled release about September - No side effects from...

G'day Duke11/TerryBefore I was admitted to Prince of Wales Hospital in Sydney I had no life and was suffering extreme muscle spasms & fasciculations in my calves - they were quivering like jelly and I was going downhill fast. My neck and abdomen were also in spasm and no one seemed to have any...

Gday ShannyeekaYour symptoms sound exactly same as mine so I am thinking it may be Isaac Syndrome or NeuromytoniaI had the run around before I was diagnosed .Had 3 EMGs and a lot of stress before It was found. If you want to send me a Private Message with you email I can send you a linkto a...

LindaWe have not discussed progression. The Doctor is very positive about regression and remission so am I most of the time. He said it will not kill me so thats a good start. I have improved since treatment.Diagnosis EMG, Lumbar Puncture, Physical Presentation(stiffness fasciculation...