Do any of you have autonomic neuropathy?

[Billydude]

Jonell,  I rarely go into a swimming pool but when I do it is indeed cooling.  Its just that the sun here is so strong it feels like it is searing my face.
Steve

[kimbo]

J & J

I love the hat. Soooooo cute.

Janna,  Your son looks like quite the gentleman. Very handsome, what kind of uniform. Does he want to be a pilot.

kimbo

[JannaLee]

Thank you Kimbo!

His uniform is (University Of Minn.) Air Force ROTC, in the photo he's wearing the "color guard" white ascot.

He has indeed been selected for an Air Force pilot position.  My husband (his father) is a retired fighter pilot and is about to bust with pride.  I'm torn between worry and pride...pride being the bigger part....

[seren]

Hi Jonnell,

your daughter is gorgeous and so young to have this awful illness   I do sweat, but I am convinced my thermostat is faulty as I can get hot & cold at the same time.  Similarly, like some of the other members, I cannot be in draughts cos I hurt, but I can't sit in the sun for more than a few minutes, this is such a strange illness..I sincerely hope your daughter gets some relief from all her symptoms I'm sending up my prayers for her.   

[Kimi]

Jenna, I wanted to say too how handsome your son looks in his picture!!! There is just something about a man in uniform!!! Ahhhh, I remember when my hubby was in the Navy reserves and how handsome he looked!

Kimi

[jonnell]

Seren,  Thank you for your compliments and prayers.   Lots of love.   Jonnell and Jenna

[jonnell]

Kimi,  I know you made a honest mistake but it made me laugh,  if my daughter jenna has a son something is wrong. lol.  I know you meant janna.  Lots of Love   Jonnell and Jenna

[JannaLee]

Thanks Kimi!  I agree about the uniform being so handsome!

[navydad]

I believe I;m on the verge of losing my mind, tis neuropathy is getting worse,, lots of phone calls to Neuro and no reply,, I cant go outside,, my body temp shoots up to 103, then come inside and have to wear a flannel shirt,, I almost could put up with this if there wasent so much pain involved,, it never stops, my rheummy said after the steroid treatment failed that he wants to try rituxin,, i dont kow whats going on with my body,, but its not good,, for as long as I have been on here,, I have complained that my stomach was slowing down,, well its finnal just about stopped, and my GP gave me a letter to go back to work with so many restrictions that I wonder if i can even go back,, he said I suffer from bous of lethargy and Malaise,, now why did he have to say that,, did say that I should not drive or operate any mavhinery,, this should beinteresting, I see a new neuro on monday,, maybe he has some other answers,, they better get on the ball before I end up in a wheelchair,, it jst seems like everything is happeneing so fast
  I even went so far as to go to Indiana with my friend,, actually was admitted to a hospital out there,, but we made no progress, least my friend tried to get me some more help,, and I never heard of a doctor making rounds at 4am,, but this one did,, I took the train home,, 11 hours of torture,, legs going nu,b,, try going to the bathroom on a moving train while yo try to will your legs to hold up
yesterday a new sympton started,, arm burning,, literally a burning sensation on both arms,, I just am about of patiencemm abd tired of fighting,, its getting just to hard,, I akost feel like my family is letting me just hang around while my life has gone to pot, m short term memory is shot,, but I can remember things that happened 20 years ago,, its getting weirder,, sometimes I wonder if I do have SS,, and nto advanced Lymes,, although I have been checked for it,, but its hard to Dx,, I wish they couldl ive day in my body,, and with summer coming, I have no idea how I will survive it,, id I can

[jonnell]

Navydad,  Im sorry you are having it so rough.  But it sounds to me like more then sjs is going on have u been tested for ms.  You need to get them to admit you to the hosital and tell them you are not leaving untill u get some answers.  I dont know how you stand it they himhauled around at first with my daughter and I was livid.  I cant imagine your frustration.  Know that we are all here for you and understand what u r going thru.  Hugs and Kissess   Jonnell and Jenna

[navydad]

I am livid too, so is my friend that took me to Indiana,, my family just doesnt understand any of this,, actually how can they,, they dont have the symptoms,, as for gettinginto a hospital,, forget that,, going to a ER or begging to get admitted has only reslued in a hpone call from a Mental health (expert),, saying that depression can be playing a big part of this,,,, I hung up on her,, this isnt depression,, its just nothing but pain,, a few weeks ago I went to the er for bloddy stool,, I got percot,, why in the world would they give me percot,, I swear its midevil medicine around here,, or you heear buck up,, lots of people have aches and pains,, LOL,, ok,, its just aches and pain that make me not feel where i;m walking or feeling hot and cold at the same time,, go from putting two flannel shirts on or ripping them off,, I give up,, there not going to do anymore,, didnt even mention the sinus thing,, its gotten so thick I cant clear it from my throat,, not to be graphic,, but there are times I have to drag it out of the back of my throat,, nights are worse,, cough every ten minutes,, sleep ten,, wake up and cough more of it out if it comes out,, heard drink more water to thin it out,, ya right,, ith a bladder that doesnt work right,, its a mess

[navydad]

and yes they did test me for MS last time I was in the hospital,, through a spinal tap,, have had so many MRI;s of the spine and brain that I believe something would have showed up by now if it were MS,, trouble is,, when the symptoms are so vgue and profound,, the first thing they say are you depressed,, of course I;m depresed,, who wouldnt,, its to the point that I almost dont answer some of the questions they ask me,, they ask the same ones over and over and over again,, only hope I have is to collaspe on the job and then see what happens,,

[jonnell]

Navydad,  I dont understand how they make you work thru all that.  I live in south jersey and i am on social security for a mental disability I have been on it since 1998 and im 39 next month.  Have you tried for Social Security.  I was put out of work for depression and obsessive compulsive disorder it might not hurt to go to a psych doctor and tell them what is going on at least it might put your mind at ease to not have to worry about work.  And if u are approved they pay u retro from the time you applied.  I also get medicare and a prescription plan that pays for my paxil and wellbutrin.  I know its hard for a man not to be able to work but I think under your circumstances I think you would be approved.  Also Have you been to John Hopkins for anything?  I hear they are really good with sjs.  Has any one given you a diagnosis at all or just tried to tell you your depressed.  Im here if you need someone to talk to.  My daughter Jenna has SJS and she is 4 and my 13 year old is high functioning autistic.  So a listening hear I have.    Hugs and Kissess   Jonnell and Jenna

[Billydude]

Navydad,  I feel so bad for you.  If its only Sjogrens you have it bad.  My gut instinct tells me you have other complications or a myriad of disease.   There must be some kind of advocate or something that can help you transition to disability.  You shouldn't have to be working with all that is going on for you.
Steve

[navydad]

I allso think some other diseases are involved,, if it is SS,,, then like you said i got it bad,, these horrible neuropathy have really progressed quickly over the last two months, last month was the 3000mg of steroids, which did nothing but actualy mae me worse in my opinion,, as for a oddicial DX of SS,, NO,,  I have never been said to have it except by the Rheummy in Pittsburgh who is supposed to be the besst in our part of the wotld,, hes been very good at returning callls,, some as late as 8pm, asking about the progression of the disease and if the treaatments aremaking any differece,,
  As dor work,, going back terrifies me, i mean literaly scares me to tears,, I have nothing to contribute to the line of work I did before which was being a electrician, through the union I was able to collect 26 weeks of disibility,, those checks have run out,, and were left to try and keep the house over our head without the bank taking it over,, so I have no choice other the to return to work with what little I have left,, which is very little,, I see a new neuro On monday,, I hope this one can get to the root of the neuropathy,,
I wanted to try for social security disibility months ago,, but the doctors felt i wasent disabled enough, now there crawling over each other to help me write letters to the effect that I cant work,, but with finances very limited,, I cant hold out that long waiting to get it,, we would loe everything
My wife asked me this evening if I wanted to go out to eat,, I told her Honey,, i would love nothng better then to do that,, but I can barely walk,, my stomach doesnt work right,, and I have become very unsocial,, I just dnt want to be around people,, I have a hard time accepting I;m sick,, and I dont want to   be around people who are perfectly healthy,, making plans for vacations and things while I wonder what tomorrow will bring in the way of something new happening to my body, its no way to live thats for sure,,