Author Topic: New user  (Read 4887 times)

balor123

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Re: New user
« Reply #15 on: January 21, 2011, 09:02:05 PM »
Quote from: anita
Was your gastroparesis diagnosed by gastric empty test?
Yes. 88% retention at 90min. However, pillcam 6mo later emptied in 30min with 5hr empty of small intestine (grossly normal). EGG showed mixed dysrhymthea around the same time so not cured. Strangely, I only have reflux never nausea.

Quote from: anita
I use Domperidone which is not available in the US, but very easy to obtain from Cananda. It works quite well without the side-effects of reglan.
Tried both a few times with no success but started a trial of Domperidone again last week just once a day and working well now a week later. Would like to have another child this year and these drugs can mess with fertility by raising prolactin levels so I'm concerned about it.

Quote from: anita
Are you taking reglan and did your fasciculations starts "after" this time?  
No fasciculations started before then. I'm thinking I have an antibody to potassium channel (VGKC), commonly found in benign fasciculation syndrome and Isaac's Syndrome, also autoimmune. A 2010 paper showed Zofran cured a Isaac's syndrome patient in 3mo. Anyone heard of this? I may volunteer to be a Guinea Pig.

Quote from: anita
Have you had an EMG with nerve conduction studies to confirm the fasciculations?
Yes but only on left calf for a benign weakness. I have an allodynia that comes and goes there and they checked that - also normal. You have one of these spots as well?

Quote from: anita
Have you had a lip biopsy and/or Schirmer's test?  You mentioned more tests are being done...which ones?
Waiting for Fabry's syndome and Gastroparesis autoimmune panel (VGKC in particular). Will ask for genetic Sjogren's test, Schirmer's test, lung x-ray (rule out scarring), and C1 complement. What else should I ask for? Is lip biopsy necessary?

Quote from: anita
A trigger for one may not be for some else.
We should really do some data mining ourselves here. Has anyone every assembled a survey? One of my MS's was focused on data mining.

Quote from: anita
Hopkins would be a great idea if you can go.
Is there anything he was able to do that your specialist at home couldn't?

Quote from: anita
Do you have other autonomic dysfunctions (other than the gastroparesis)...like fluctuations in heart rates or low BP upon standing, temperature intolerances, balance, etc?
EKG was normal but I have an overnight oximeter and pulse rate is somewhat variable. My sleep doctor said the spikes are probably REM. No problems with BP - it actually dropped 20pts using CPAP. No other problems.

Quote from: anita
What about pin/needles, burning pain?
All day for 2mo but my potassium was a bit low. It mostly went away by fixing low potassium but now phosphorus is low. Could just be dietary problems from Gastroparesis.

balor123

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Re: New user
« Reply #16 on: January 21, 2011, 09:12:45 PM »
Quote from: inga
I am not convinced that they covered all bases in terms of your exposure to infectious disease.  Reiter's Disease can sometimes develop in young males exposed to any variety of infectious diseases.  It is an autoimmune reaction to an infectious agent.
Me neither. My PCP is complacent and spends his energy convincing me its psycho-somatic but all specialists say he's one of the best. I guess that's a common reaction to diseases like these. My mother in law is an academic vet and she also mentioned infectious disease. My two biggest eruptions were in India in 2008 and Costa Rica in 2009. Stool tests after India didn't show anything and doctors in India didn't have time to do their own tests. Taking your cue, I made an appt with ID dr at Beth Israel. They were hesitant at first to give me an appt but after some background they finally agreed.

From Srojen's, has anyone here ever visited an Immunologist to try an identify troublesome antigens?

My brother is a doctor and caught tuberculosis a few years ago. He was on antibiotics and supposed to be non-contagious but maybe that's the problem. I know that disease can cause some weird systemic problems.

Quote from: inga
Splenic enlargement is odd.  I would not let that go, given you were in the tropics.   Was your daughter in the tropics?  If not, it is possible, that if you had some infection, you could have shed it to her.  She must be young, since you are only 30.
Been going to Costa Rica all my life with only (bad) allergies. Used to have sneezing marathons that would last hours but got better as I got older. We took my daughter as well when she was 6mo old.

balor123

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Re: New user
« Reply #17 on: January 21, 2011, 09:21:10 PM »
Quote from: warmwaters
You mention Beth Israel. If that's Boston's Beth Israel
Yup that's the one. Unfortunately, that hospital has problems. All office visits are billed outpatient. The offices are overrun with patients. I can't work with the staff worker for my Neurologist there (Dr Ronthal) so I had to switch. I hope the others are better. Now seeing Dr Diaz in Rheumatology and Dr Pollock in ID. I wanted an different dr in ID but that's what they would give me.

I also need to be careful there because I have friends who are residents that I might run into as a patient (awkward). My ultrasound was almost read by a friend of mine at another hospital once until I saw him walking by randomly in the waiting room.

eyeamdry

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Re: New user
« Reply #18 on: January 21, 2011, 09:22:41 PM »
Balor, you are a nice addidtion to our "community", although we are sorry you need to be here.  Lucy

anita

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Re: New user
« Reply #19 on: January 22, 2011, 07:13:14 AM »
Balor,

Glad to know the Domperidone may be helping.  It is not uncommon for the GP to fluctuate, but that is going from one extreme to the other...strange.   My empty was 96% retention and pillcam stayed in the stomach for 6 hours and took every last pic from the stomach...not one from the small bowel...so they don't even know how long it stayed.

Diet plays a large role in proper GP control.  Raw veggies, many fruits, nuts, etc are the hardest to process for a slow moving gut and absorption for many nutrients (K included) and meds can (and will) be a problem.  I have frequent low potassium (K), D, iron, etc.   There are many here with GP that can also offer tips.

I have had a very rare occurrence of allodynia on one leg, but never stayed long enough to be tested or bothered by.  It just seems like part of unusual sensations I get sometimes and never gave it much thought.

The pins/needles do sound like they can be K related and it decreasing when you bring the level up seems to confirm it.  If it gets worse (or you have other neuropathic pain) you should consider skin biopsy for small fiber neuropathy.  EMG's are usually negative for this.  It would also be interesting if the fasciculations would be reflective on this test.  Inga might know.  Maybe she'll see this and comment.  She would know more about the Fabry's syndome also.

As for other tests, your list sounds good for now.  The lip biopsy might not be necessary with the +ANA and +SSB, but as fast as this came on, I wonder whether some "other" condition has sent your immunity into overdrive.  The lip biopsy would confirm the pathological changes consistent with Sjogren's.  it is quite controversial here with many members encouraging others not to do it (common lower lip numbness and/or small lump), but you have no evidence of typical Sjogren's symptoms (dryness) so I go back to my thought of whether something else is causing changes in your blood immunity.  I (like a few others here) sometimes question my own diagnosis due to multiple maladies that seem to go way beyond the realm of Sjogren's.    A topic for a later date.

There has only been minimal (at best) polls done here and nothing in regards to what you're describing...that I have seen.  We have asked about a separate section of the board to be devoted to certain topics (like technical/diagnostics, etc) but the mods discussed and found it might be harder on their end to develop and maintain more than what they already have on their hands.

My Doctor at Hopkins was the one who finally (after 12years) put the pieces together.  I had been seen in several paces while living in TX (UT Southwestern in Dallas, Baylor) and even went to Mayo in 1998, but only had scattered diagnosis of severe autonomic neuropathy, antiphospholipid syndrome (APS) with 3 strokes & 2 amaurosis fugax, ASD and atrial aneurysm, gastroparesis, iron def., pancreatitis, adult onset asthma, sinus damage, severe livedo reticularis (which means Sneddon's syndrome with the APS)...and the list goes on.  Dr. Birnbaum at JH sat for 3 hours (no joke) and decided neuro complications of SjS best accounted for the wide array of symptoms.  I am sero-negative, but my schirmer's was very + and lip biopsy showed almost complete destruction of the acinar structures and listed the findings as consistent with SjS at end stage.  This allowed Birnabum options for treatment.  Now living in VA, I continue to see him for further evaluation.  

Do I still question the SjS angle...of course.  There are so many things that cause sicca (meds, neuropathy, etc) and having the many conditions, I really don't know which came first or whether some other factor is playing a role.  After seeing Birnbaum for almost 3 years now, we still investigate.  No local doc would ever continue in this manor.  it's hard enough to get a doctor to recognize that something "real" is happening and that it's not all in your head...much less get one to hang onto the ball and carry it until the mechanics of your illness is completely defined.  Birnbaum may not be the best, but for me he seems motivated (largely due to his research) and committed...both hard to find in any ONE doctor any where else.  he also works well with my other specialists at JH and even in VA.

I would suggest if not JH, you be seen at a academic hospital closer to you.  Your case seems to be complex as deserves top notch attention.
« Last Edit: January 22, 2011, 07:27:01 AM by anita »
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