Author Topic: Crap is what it is!  (Read 19724 times)

puccini914

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Re: Crap is what it is!
« Reply #45 on: September 01, 2010, 03:28:43 PM »
gphx, I have the positive blood markers for Primary SJS, the only problem there is that my Rheumy informed that those markers now make all other blood tests mute.  something about Sjogrens can make blood values for Lupus, Ra and alot of other AI conditions show false positive or false negative at any time.  I wonder if maybe that doesn't prove right there that they are all connected in some way and that we really are having symptoms creeping in from other conditions that would probably respond to treatments for those conditions.  My doc was telling that there are great treatments for MS when caught early enough, if overlapping MS is causing these SFN then maybe some of us could benefit from milder forms of those treatments.  It seems to me if this disease can affect bloodwork to that degree, maybe it does more then just alter the test results, maybe the diseases themselves overlap to that extent as well.  That's why our diagnoises keep changing, it's lupus, no it's RA, no it's SJS.  Perhaps SJS is not the nothing disease label, maybe it's more of an everthing they just can't nail down.  I know that I've seen pretty much every system affected on this forum, and it's way more then dry eyes and mouth.

gphx

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Re: Crap is what it is!
« Reply #46 on: September 01, 2010, 05:26:42 PM »
Good points Puccini. I've also found it interesting so many of them have the very same medications for treatment.
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

RachelsMom

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Re: Crap is what it is!
« Reply #47 on: September 01, 2010, 05:34:18 PM »
gphx, I have the positive blood markers for Primary SJS, the only problem there is that my Rheumy informed that those markers now make all other blood tests mute.  something about Sjogrens can make blood values for Lupus, Ra and alot of other AI conditions show false positive or false negative at any time.  I wonder if maybe that doesn't prove right there that they are all connected in some way and that we really are having symptoms creeping in from other conditions that would probably respond to treatments for those conditions.  My doc was telling that there are great treatments for MS when caught early enough, if overlapping MS is causing these SFN then maybe some of us could benefit from milder forms of those treatments.  It seems to me if this disease can affect bloodwork to that degree, maybe it does more then just alter the test results, maybe the diseases themselves overlap to that extent as well.  That's why our diagnoises keep changing, it's lupus, no it's RA, no it's SJS.  Perhaps SJS is not the nothing disease label, maybe it's more of an everthing they just can't nail down.  I know that I've seen pretty much every system affected on this forum, and it's way more then dry eyes and mouth.

Hi!

Since this whole +ANA/SSB came into our lives a little over a month ago, I have been doing a lot of research via many different websites as well as asking questions about it to other health care providers we have come in contact with and a few friends who have been diagnosed. What I am getting is this... *I think* that in my daughter's case and others with the same blood work that are exhibiting the 'usual' AI symptoms have an AID. As most of you know, many of the AI diseases overlap the same symptoms, however some may branch out into a different realm that distinguishes it from the standard baseline. In my mind, and please feel free to correct me if I'm not understanding this right, that a + ANA means there could be an AI issue. There are a few paths it could be, so based on blood work and symptoms a baseline will be distinguished...Thyroid or Lupus. (I'm sure there's more, but I'm not THAT educated yet.  ;D) So now it is either left at that OR if additional symptoms are present an extension to the baseline is added.  Example, SJS is *usually* indicated by dry eyes & mouth &/or a + SS Antibody (with additional symptoms to possibly follow later). So In my mind, I'm thinking my daughter has Lupus with SJS tendencies. Kind of like, a person whose blood tests indicate that they have Hyperthyroidism and has several of the baseline symptoms of it ALONG WITH bulging & swollen eyes, I would think that a person has Hyperthyroidism with Graves Disease. Does that make sense??? I don't always state clearly what I mean to say... ::)

 My daughter's Ped. Rhuemy explained to us that SJS is a 'sister' of Lupus but it isn't Lupus!? Not only that, but he said flat out that he doesn't think she has Lupus and he was just digging deeper to see if she has Sjogrens, but he's not completely sure of that either... ???

So here's me when I left his office that day... *scratching head* Ummm, okay, so my daughter has a + ANA & SSB, has had joint pain for nearly 10 yrs. that is progressively getting worse and is now affecting more joints (on both sides) and every day. She is tired ALL THE TIME, on rare occasion experiences Dizzy spells/black outs (5 in the last 6 months), is extremely heat sensitive...(it doesn't give her a 'typical' spotty rash but she flushes, gets dizzy and sick very quickly and easily.) She has stomach pain which makes her double up into a ball and she has to sleep it off. She is active in sports but is weak. She has had a + Sed Rate in previous blood tests but not this last time, headaches, dry eyes, dry mouth, anemia & eczema...but because we don't know if she gets fevers (how do you know if you have a low grade fever?) she doesn't have the butterfly rash and her joints don't turn red and physically swell her Dr says that she doesn't have Lupus?! I don't get it...which is why I did my own research... because I know different Dr's will have different opinions on the same subject.

irish

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Re: Crap is what it is!
« Reply #48 on: September 01, 2010, 09:34:26 PM »
I didn't get in on this til now and my only thought is that if she has the positive blood work, has had positive sed rates, passes out, has a rash, pain in joints, doesn't have lupus or sjogrens, then what in the heck does she have??? Second opinions are welcome in the world this group of people live in. Good luck. Irish ;D
« Last Edit: September 01, 2010, 11:12:35 PM by irish »

gphx

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Re: Crap is what it is!
« Reply #49 on: September 01, 2010, 10:59:00 PM »
Hi RachelsMom, SS and SLE (lupus variants) have been described to me as a 'continuum'. Basically what they mean is the same unique genetic combination is resposible for producing both and someone can have one, the other, or be somewhere in between. My mother is ANA+ and has an SLE characteristic butterfly rash. For me it is completely seronegative, sicca and neuro. No telling what the future will bring though. My mother's ANA is positive sometimes, negative other times. If someone doesn't have it at a particular moment it seems to mean nothing.

I agree with Irish. With ANA+/SSB+ if it isn't SS or SLE what is it? Perhaps your doctor is denying everything until he's sure there's no stone been left unturned. If so that's probably a good sign. I'd rather have too many tests than not enough! Here's hoping you get clarification soon, preferably with good news.
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

SLEEPY101

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Re: Crap is what it is!
« Reply #50 on: September 02, 2010, 04:47:07 AM »
@Rachels Mom,
  I have a positive ANA and postive SSA but have been diagnosised with Fibromyalgia! I am waiting to see the third Rheumy in March. Hopefully I will get the help I need. I am running out a options and Dr choices

Do you have access to a Research Hospital or clinic like the Mayo clinic? They would have the ability to run several tests and she could see multple specialists. This might help your daughter get some answers.

navydad

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Re: Crap is what it is!
« Reply #51 on: September 02, 2010, 07:49:41 AM »
@Rachels Mom,
  I have a positive ANA and postive SSA but have been diagnosised with Fibromyalgia! I am waiting to see the third Rheumy in March. Hopefully I will get the help I need. I am running out a options and Dr choices

Do you have access to a Research Hospital or clinic like the Mayo clinic? They would have the ability to run several tests and she could see multple specialists. This might help your daughter get some answers.

I am really starting to hate the word Fibromyalgia,,, it reeks of small fiber neuropathy,, not to say its not a real thing,, but if we all took lyrica like that lady in the commercial,, we;d all be out running around like we used to do,,,

Joe S.

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Re: Crap is what it is!
« Reply #52 on: September 02, 2010, 09:53:41 AM »
The people on the Fibro Forum that I am on Have tried Lyrica and gone off of it. They had too many problems on it. After a few months they were worse.
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navydad

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Re: Crap is what it is!
« Reply #53 on: September 02, 2010, 10:01:17 AM »
Joe,, I was on Lyrica after jumping through hoops with insurance to try it,, it had to one of the worst meds I was on,, When I see my Psych later on this month,, I;m going to ask her about going back on Imipramime,,, its a older anti Dep,, but I think it did me somme good,, now to get my other doctors on board about IVIG

inga

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Re: Crap is what it is!
« Reply #54 on: September 02, 2010, 11:02:25 AM »
Once that ANA goes substantially positive on more than one occassion you have AI disease....and they are all the same....just different array of symptoms.

Rheumatology doesn't know its head from a hole in the ground.....that is said nicely.  I can't say what I really think.

SassieCat

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Re: Crap is what it is!
« Reply #55 on: September 02, 2010, 12:49:30 PM »
I just went to see my rheumy last week and was telling her of some of my new symptoms.  She said it was probably all related to the Sjs and that no two people have the disease the exact same way.  The neuropathy is related as well as the different types of rashes that I have had. 

She is affialiated with the Cleveland clinic. 

So, does this sound like a (don't know let's blame it all on sjogren's) or (yes, all of this fits into one bucket and not everyone has the disease the same way)? 

I hate the word fibromyalgia too! 

bloodless

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Re: Crap is what it is!
« Reply #56 on: September 02, 2010, 01:20:31 PM »
I hate the word Fibromyalgia too. It's what they always say you have at first. That's fine if you have it.

Navydad, if they put you on a morphine pump, let us know how that goes. It sounds good. My rheumy said it's easy for someone with this disease to be on 300 mgs of morphine a day and still be in pain. Let's hope none of is gets there.
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

harlin

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Re: Crap is what it is!
« Reply #57 on: September 02, 2010, 06:49:37 PM »
Sounds like everyone is as mad as I am!!! I hate this!!

bloodless

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Re: Crap is what it is!
« Reply #58 on: September 05, 2010, 12:01:47 PM »
Yep. We all hate it. Here it is a holiday weekend and I'm doing nothing! It was great at first because I needed the rest, but now I realize noone thought to ask me to do anything this weekend. Why would they? I can't ever do anything.
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

navydad

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Re: Crap is what it is!
« Reply #59 on: September 05, 2010, 12:27:16 PM »
same here,,,