Hello. My name is Lisa. I am 40 years old. 2 years ago I was diagnosed with Hypokalemic Periodic Paralysis and my symptoms were under control.
I started 6 months ago with new symptoms, the mda dismissed me. I went from walking to cane to walker to wheelchair in 4 months of that time. My emgs/ncvs showed benign fascillations. Negative for ALS. I am getting worse. I can no longer stand at all anymore, take steps and I am getting weaker. I am having more and more trouble taking care of myself because I am so weak and I can barely push my wheelchair anymore. I all the typical symptoms for als,swallowing problems, end gaze nystagmus(for 2 years now) and all my other tests for ms, myasthenis gravis, autoimmune,cancer,graves,etc. have come up negative. I am having a terrible time with this process. My family has abandoned me because they think Im crazy and I have been so depressed I have tried to take my life 3 times. They have me in intensive psychotherapy. 3 times in my life i have almost died from misdiagnosis. once from a freak pancreatitis attack, once from my thyroid shutting down and also from the missing the initial HOKPP diagnosis and my potassium dipping ( i had a heart attack). I am frustrated I have gone through 2 neuros who didnt understand whats wrong with me and stopped wanting to deal with me. I dont know what to do. I have lost my children and my husband in divorce and custody. I am running out of patience. How long does als diagnosis take?

Hi Lisa and welcome to NeuroTalk. I'm so sorry for all the health problems you've had with no dx. I don't have any answers for you but wanted to give you a hug.

I'm so sorry for all of the health problems you've been dealing with for the last while...I know how it feels to be left with scary symptoms and no diagnosis...But with time, comes answers...Please know that you deserve to be in this world just as much as anyone else. It's not your fault that you are sick. I hope that your family will come around and be more supportive during your time of need.

This site has many supportive individuals going through the same feelings as you, and you can find comfort, comraderie and maybe some answers amongst us.

I've read that Hypokalemic periodic paralysis is a genetic disorder...I've also read about pancreatitis being a symptom of some genetic disorders as well...Maybe you can contact your local MDA and they can help you figure things out. You deserve answers and to be feeling better soon!

I wish you all the best!
Nicky

Thank you so much for your support. im so lonely and sad. I was a member/patient with the mda but my last neuro managed to yank that support out from under me by a differential diagnosis. I no longer have the mda supporting me. I am lucky though because I am/was a soldier. I served 13 years in the military and I am now under VA care. They have are not giving up on me. They still have no definative reason as to why I cant walk,carry or take care of daily needs anymore.They called it "cramp fasicullation" with "benign fascillations". The increased my baclofen dosage to increase my mobility and put me in intensive psychotherapy to "build up my willpower". They said they have to wait until october to check me again.The mda has failed me and I felt betrayed but I have heard from a cleveland clinic doctor and what she said did help explain somewhat. She did say that the baclofen helps spascicty because of possible spinal cord origin. I am so exhausted with every effort now and its very frustrating not being able to be independant anymore. I hope that it wont be too late by the time they diagnose me because I want my family back.The weakness makes no sense for "cramp fasciullation" diagnosis. Thank you

hi lisa just try to hang in there. it can be tuff but you have to be strong for every one else still have in your life . and i am sorry for your lost .take care and hang in there

Welcome to NT Cherie.

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Have you eliminated gluten and sweets from your diet? If not, then do so. It stands an excellent chance of eliminating your symptoms and reversing your decline. There's no risk.

After a couple months test other ag proteins like milk casein, legumes and nightshades.

Good luck.
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