Author Topic: Devastated , i'm in desperate need of your expertise.......  (Read 5688 times)

irish

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Re: Devastated , i'm in desperate need of your expertise.......
« Reply #15 on: June 07, 2012, 09:33:43 PM »
A normal ESR in the states is usually from 0-20 so the numbers you quote are not elevated above normal if you use the same system. Irish

anita

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Re: Devastated , i'm in desperate need of your expertise.......
« Reply #16 on: June 08, 2012, 04:03:06 AM »
Have you seen the lip biopsy report yourself??  What does it say...exactly?  Did they provide the scale they used to grade it?

Some of the pathologists are vague and a few people here have sent the samples/slides to a more reputable lab to be re-evaluated...and the results were, in fact, different.  You can send your slides to a place like Johns Hopkins.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Tuurre

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Re: Devastated , i'm in desperate need of your expertise.......
« Reply #17 on: June 08, 2012, 04:39:26 AM »
Seattle thanks for the link

Irish then its not esr cause it should not be over 8.

Anita i will take your word on that, ask them for all testresults and bring them for a second opinion.

Thanks all for being there.

Hugs

anita

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Re: Devastated , i'm in desperate need of your expertise.......
« Reply #18 on: June 08, 2012, 08:12:41 AM »
Tony,

Make a quick call and ask them for a copy of the lip biopsy to be faxed or emailed to you...it's that simple.  If you post or PM what it says, I'll help you go over it.  There are quite a few here that were told it was negative, then after they got a copy they found out there was moderate inflammation or other abnormalities, etc.

Same goes for your other tests.  You should ALWAYS get a copy of results for your own records and to take to future appts with new doctor, etc.  An informed patient you MUST be.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

quietdynamics

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Re: Devastated , i'm in desperate need of your expertise.......
« Reply #19 on: June 08, 2012, 10:17:40 AM »

Anita is right on the mark...always get a copy of all test results for your personal records.  Take them with you so tests are not repeated and everyone is on the same page. I also take a typed page of all meds/dose, a short typed page of current symptoms appropriate for the dr. field of expertise (this should all fit on one page/ and be brief so the dr can ask his/her own questions)

When you see a specialist, they are only going to focus on their area of expertise, after the exam they may refer you to another specialist for other symptoms. But, for symptoms that they do not treat they are going to tune you out. So by bringing up 20-30 symptoms you are not helping. And they are probably going to be skeptical when test results come back negative.

You stated you have a therapist that cancels appts (due to her own illness, while you may sympathize), it is probably better to get another one who can help you and coach you on how to handle/ prepare for  your Dr. visits.

Insisting you have Sjogrens is something I do not understand....as there are so many AI diseases and combinations with overlaps? You are boxing you Rheumatologist into a corner with your 1000% insistence vs. the Dr. years of medical experience.  If you look most people who post have overlaps of AI.

Many have posted here that stress is a major trigger of symptoms. And the effects of stress are cumulative (even at a subliminal level).  Stress without an AI can wreck havoc on the human body and mind
Meds for anxiety are OK within their limited capacity, but, lifestyle changes are the most empowering. A regular sleep quality pattern (sleep is when you body repairs itself...so if you are waking exhausted...your body is suffering and your symptoms are heightened in pain) , exercise, fresh air, eating, etc. That is why most anxiety/depression meds are with therapy for a two-prong approach to treatment (usually the goal is to eventually wean off the med, unless there are other issues.)

The weekend soon here .... I hope you will do something fun.




Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Tuurre

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Re: Devastated , i'm in desperate need of your expertise.......
« Reply #20 on: June 09, 2012, 06:43:24 AM »
Thanks guys

Anita i'll order the copies on monday and get back to you when i got them.

Quietdynamics i'm sure of Sjogrens like i said, i'm the only one who knows what happened 14 years ago and living in this body, have read everything about all AI deseases and like i said it's 100 % Sjogrens with the braindamage, polyneuropathy, siccasyndrome, low grade fever for 10 months all from day one, i have like 30-40 disabilities now. I know it really could sound like i'm "salting" my story but unfortunetly i'm not , but you're right about one thing like others have said aswell, i've maid a huge misstake going to the docs telling them that i know what it is now.

So from here on i'll go for second opinions and will just put the diagnosis that are on the table and ask them to find the answear of why i got no tears with scrathes on my corneals, blepharitis, lichen, iritis, cellular changes in the intestinals, livercysts, low grade fever from time to time, rashes, elevated not esr but similar, here in sweden we use a different system, all these diagnoses i have on paper this far. But like you said i'll try to stay calm now.

Tuesday i'm going to another onc for a second opinion about all my swollen lymphnodes and wednesday for the ultrasound of the liver. Gonna book with a immunologist asap aswell.

Like i use to say as long as we are alive we will get all answears.....

Wish you all the very best, thanks for being there

Hugs Tony


quietdynamics

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Re: Devastated , i'm in desperate need of your expertise.......
« Reply #21 on: June 09, 2012, 01:50:16 PM »

Tony....you really do sound much better.

I know that this is very hard, very frustrating. For the last 3-4 years I was at about 30% of my physical ability. My symptoms started about 10 years ago.  I now live in another location and am getting much better medical care.... It was actually the neurologist who has helped me the most. Now that I am able to get quality, restorative sleep (using meds) my body, emotions and thinking is so much better. And the neurologist helped me with the daily headaches. So with both of these helped I am not falling asleep all day....then not sleeping for 48+/- hrs.
Even in the US it can be difficult, depending on where you live. As I stated I only got better medical care after I moved to a more metro location.

And I really did suspect that the way things work in Europe, Sweden, etc are different.

But, the fact is that STRESS will and does make they symptoms that exist progressively worse and will trigger new dysfunctions as well.

So I really want to know what you did this weekend for FUN....even for 30 minutes?   :)
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

gold55

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Re: Devastated , i'm in desperate need of your expertise.......
« Reply #22 on: June 09, 2012, 08:39:34 PM »
Hi Tony,
I hope you find better answers as you continue to be proactive about your health issues.  You are truly a strong person to have gone this far on your own.  You are in my thoughts and prayers.  I know good things are coming your way soon ;)  hugs to you!
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

Tuurre

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Re: Devastated , i'm in desperate need of your expertise.......
« Reply #23 on: June 14, 2012, 12:36:42 PM »
Hi

Thanks again to all of you, Gold55, Quietdynamics and others.

The ultrasound of the liver came back positive due to the doc, it was some small cysts and one larger 1,5cm but he said they were not dangerous which was positive, just fluid ones!?

Then i got a knew onc who was really good, a professor in hematology!? he said that we need to find out were the inflammations in the body are and i?m doing new tests to rule out if there is a lymphoma issue.

Going for coloscopi, gastroscopi and the eyedoc for the scrathes on the corneals aswell. Sounds funny doesn`t it  ;)

Then my housedoc has put me on sickleave now, finally!!! a relief while doing all of these investigations so that?s nice that i dont need to go look for a halftime job this fatigued.

Wish you all the best

/Tony


quietdynamics

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Re: Devastated , i'm in desperate need of your expertise.......
« Reply #24 on: June 14, 2012, 01:25:30 PM »

Yeah....Progress.... :D

When I was going for the colonoscopy I was so tempted to write:

"One Way
Do Not Enter"

Across my Back.....LOL
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Crymeariver

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Re: Devastated , i'm in desperate need of your expertise.......
« Reply #25 on: June 15, 2012, 04:14:26 PM »
I think the doctor who wants to get to the root cause of the inflammation is on the right path. 

jazzlover

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Re: Devastated , i'm in desperate need of your expertise.......
« Reply #26 on: June 15, 2012, 05:45:30 PM »

Anita is right on the mark...always get a copy of all test results for your personal records.

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Amen... ALWAYS, always.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease