Alzheimer's plus Severe Neuropathy?

[faithgoeson2]

My husband has early onset Alzheimer's, symptoms beginning 10 years ago, and it is progressing very slowly.  2.5 years ago, he was hospitalized with Guillain-Barre Syndrome.  After 5 days in ICU, he was released to my care unable to even ambulate to the toilet.  He has received zero healthcare, no meds, no therapy, just told he'd eventually get better.  And, he did for a few months.  About 9 months post Guillain-Barre onset, he began having severe neuropathy issues.  He is in constant, severe pain all over his body.  His toes never did wake up, but he randomly has a numb feeling anywhere from his legs to his arms to even his brain.  If he dares to do some work around the house or play with our little girl, his body will completely shut down for days.  He will sleep and be extremely cold, unable to warm up (he rarely a cold person).  You can feel with your fingers that the skin on various parts of his body will be ice cold as if he is dead.  He struggles with severe weakness and even wheezing every day of his life.  The pain is at least a 5, often way more, every single day of his life.  Neurologists here have told him that they have no idea what is causing this.  It is not a typical Alzheimer's thing.  And, it's not typical GBS either.  The fact that he has the two issues suggests a link, but nobody knows what it is.  They all want him to go to another state to get diagnosis, but we cannot afford to go.  He has been left with no help at all.  No meds, no therapy, just suffer until you die.  That's their plan because we can't afford to travel.  All we need to know is WHAT THIS IS.  If someone can tell us what it is, we'll tell them.  Then, maybe they will treat him.  Maybe someone here can help, who knows?  

[heartfluttersflyawayplz]

How's your dad today, yes sad to say it's a very slow progress and sad, they call it the long goodby, is he on any meds for it, that will also slow it down

[slaytheday]

Hello.

  I have pain all over'. I am diagnosed with  Multiple Sclerosis.  I have Fibromyalgia and Degenerative Disc Disease.  Those are just the highlights.

  Do you know what all your husband was tested for?

  The only answer I have is to not give up and another question (I'm so sorry) what expectation by way of diagnosis do your other doctors have from this out of state doctor?  What is her/his specialty?  Have you done a search on this doc on the internet?

  Is there any chance that whomever recommended that doc could have a call and/or send records to them, in other words a consult?  

  I feel terrible for you and your husband.  This is a nightmare.  I wish that i could hellp.

Blessings,

  Melinda