Mayo

[Joe S.]

I live about an hour and a half from Mayo. The traffic going down there can be tough at the wrong time of the day. We will be making the trip this summer for the international beep ball tournament.

[navydad]

I have been doing some research and have come to the conclusion that I might not have SS at all,, I have never shown any markers,, ANA,, no SS-A, or SS-B,, yes mt neuropathy continues to get worse,,
  What I am now thinking is that I have Crohns,, My stomach has been getting worse over the past two years,, I have need diagnosed with Barretts after a endoscope, my gut goes from alternating constipation to watery diarehha which i am suffering from again,, I have read it can casue neuropathy and also autonomic neuropathy, now the last CT scan showed no imflmatory processes going on, but I dont kow if thats conclusive as to wether you have it or not,, my bloodwork is normal except with a chronic below normal level of B12 and Vit D, last night was just a gush of watery diarehha that is green in color, when I eat it feels like food is being squeezed through my gut,, this has progressed, my lips and mouth burn constantly, and the muscle pain just never lets up regardless of any med I take,,
  last night I prayed to God to let me wake up just one time without pain,, naturally I hurt worse today,, my hands are buzzing,, my eys are crusty again,, and theres not a part of my body that doesnt hurt, I hate teh twitching,, the nonstop twitching,, I am sorry for venting so much, but everyone here seems to have flares and come out of them,, I have never ever had a flare that went away,, I just seem to get worse from one day to the next,, I would love to be in th hospital and get to the bottomof this,, but thers no hope of that,, ER rooms are out of the question,, last time I went two weeks ago I was told,, we are here to save lifes that are in dangers ofdying,, so that leaves that route out, all I know is I get sicker by the day,, have to hold the razor inone hand and hold it with the other,, I cant control it over my face,

[gurs]

Navydad, everytime I read your posts, your symptoms sound just like mine, and I also cant find any relief with anything, Rituxan, IVIG, all made me worse?
I have all the neuro issues going on as well, and sure I also have the autonomic dysfunction..but..even if they diagnose it, then what? they will just recommend some more
DMARDS to try, which I have ,and cant tolerate..then what? I guess it would help your piece of mind though..ive had it with all the testing and traveling to see all these doctors.
Most of them dont know what the heck is going on. I have my one great rheumy and one hematologist and im sticking with their opinions. We dont have many options.
Good luck to you though..

If I were you...I would get hotel room and get out of the house...you dont need the stress...

gursie

[Epson]

I'm thinking of asking the doctor if they could just be me in a drug induced coma for a couple of weeks so I can get some rest.

[navydad]

Epson,,now thats soemthing i could go for,, wake me up around june

[inga]

I have never had a 'flare'...I just keep going downhill.  I also have PN, (autonomic neuropathy and sensory).  A great deal of misery is caused by PN.

[navydad]

Same here Inga,, its horrible,, half afraid to eat,, when I do,, I pay for it by food jkust deciding when and if it will decide to move throughmy body,, and the odd weird sensations of the small fiber neuropathy,, had a neuro tell me,, well at least it isnt morot neuropathy,, sometimes Iwonder which is worse,, falling down or not feeling anything, to me everything feels like cardboard,

[stillsguy]

navydad

chronic B12 deficiency, secondary to your gut issues, could be your problem. B12 doesn't have to be below 'range' to be flagged (low normal is good), (these levels too are an individual thing). I wonder what your CBC panel's say (might've said) about your red blood cells in the past, and homocysteine levels?

Long standing depletion of B12 can do some serious damage, irreversible damage. So you dont want that to drag on.... (Of course, you have to be able to absorb the B12 if you put it on your medicine shelf...) I used to inject, but now I take a 1000mgs daily.... martini on the side tho 

wish u well

[queenoptimism]

Hi NavyDad and everyone.

I'm really new here but I have what I am told are rare Neuro symptoms related to SjS (possibly other AI problems) and I am in Metro Detroit, about 4 hrs from Pitt.  If all else fails, you may want to look into the Neuroimmunology specialty at Detroit Medical Center.  I'm happy to help you connect with my doc if you need it.  What I like best about DMC is they are not messing around time-wise.  Appointment was Wednesday and my Gallium scan in Monday followed by a 3T MRI as soon as Gallium is out of system.

PS I used to live in Ocean City, NJ and as for Wildwood - Watch the tram car, please!