Hi! Out of the loop post splenetic and questions.

Hi there. I'm not new here but haven't really posted. I try to keep up with the research but am not on my game lately.
I was diagnosed with ITP when I was 13. All avenues of treatment at that time failed and I had to be flown by helicopter and almost died at the age of 17. It took over a month for my platelets to even close to be stable enough for surgery. My last option at the time splenectomy. Well I had an accessory spleen so a dual splenectomy? Lol
Since then my platelets have maintained a very high average and the splenectomy was a success. But being spleenless has dealt my immune system some horrible shots. Basically I haven't felt healthy and have a list of diagnosis since then. Nothing ever adding up all the way; basically I'm a confusing mess. Or a medical mystery or special lol.
We'll this year I got yet another diagnosis. Gastroparesis. No one ever seems to know what it is. I gained uncontrollably up to 205 lbs and I've dropped 80 out of control in no time at all. My stomach is essentially "paralyzed" it no longer works. I can't eat solids and can barely tolerate any liquids. They don't know why so idiopathic. My favorite word. It's taken me down more and more over time. I'm now being sent to a surgical consult and in the meantime going to have a temporary feeding tube in my nose that goes past my stomach (nj tube).

My concern is about 3 months ago they did a cbc I always have my platelets checked and they never budge from around 350 at the lowest to 450 ish. They've run in that range without a budge for 18 years. It was lower then it had ever been 180 now I've been through this I know that's not under but they saw a possible splenule (or could have been scar tissue) on a abdominal scan for my other issues. I'm mid switching primaries well because mine stunk and an insurance change so I've not had the chance yet to bring up my concerns. It's taking me a bit to get in with the new primary. Anyways the next blood test was 170, the next slightly lower: I've had a lot been in the ER a lot and have many for my Gastroparesis now too. Anyways I passed out lost consciousness and am persistently dehydrated so I ended up in the ER again on the 1st. I looked up my results my platelets have gone down to 100 which is below their 140 and up normal.
No one said a word to me at the ER thanks guys lol.
But having gone through this already and know it can and has reacurred in people I'm obviously freaked out. After my temporary tube I may need more permanent options for feeding. Now I'm worried ITP is rearing its ugly head again.
In 18 years not a budge. In 3 months from my normal high to 100 on the 1st. Now I know that's not as low as mine have been before. (When I was flown they were as low as they could possibly be and I lived off steroids Rhogam transfusions and a still persistent low count for some time).
But that doesn't help me panic less. My body's all over just not happy and it loves to attack itself. Has anyone ever had it I guess come out of "remission"? How do you know? When should I really worry? Ect
Obviously I'll push my new primary when I see him but in the meantime and on a holiday weekend right before I'm supposed to get a tube I'm kinda, ok a lot in a panic over both. Knowing they've never budged and are falling is really scary. I don't know if my body's just confused and they will go back up or if it's starting again. My body was very resistant to treatments and I'm shocked the splenectomy(s) worked. But it's been so long now and all of a sudden wam they are being tricky little buggers again.

Any updated knowledge or experience would be greatly appreciated especially so I know what to say to my new primary. Go in meet him for the first time looking like a disaster with a list of concerns. I'll make a great impression lol. Just so overly consumed with both (and malnutrition and dehydration doesn't help) has me feeling a lot of stress.

Thanks so much in advance! Sorry that was so long.

I am so sorry for all you are going through!

I would like for you to try to read this article from the Mayo Clinic:

www.mayoclinic.org/medical-professionals/clinical-updates/neurosciences/autoimmune-gi-dysmotility-a-new-direction

The gist of the article is that your gastroparesis may be a subset of a newly identified condition they are calling autoimmune GI dysmotility, and there is hope of treating it with immunotherapy.
Some exerpts:

"With AGID, the presumption is that the nerves controlling the GI tract are being targeted by immune cells, resulting in altered neural function and thus, altered GI transit."

"When AGID is suspected, patients are given a 12-week "diagnostic" trial of intravenous immune globulin or methylprednisolone. A response to immunotherapy in the acute treatment phase of suspected AGID has diagnostic as well as therapeutic importance."

"When we give them immunotherapy, the improvement can be dramatic. Patients can go from persistent nausea, vomiting and weight loss to feeling normal within a few weeks."

Their work is reflected in a published study:

Flanagan EP, et al. Immunotherapy trial as diagnostic test in evaluating patients with presumed autoimmune gastrointestinal dysmotility. Neurogastroenterology & Motility. 2014;26:1285.
onlinelibrary.wiley.com/doi/10.1111/nmo.12391/abstract

The results in the study showed the following response rates:

Postimmunotherapy, 17 (74%) had improvement (both symptomatic and scintigraphic, five; symptomatic alone, eight; scintigraphic alone, four).

Based on this, 13/23 (57%) had symptomatic improvement from the initial diagnostic immunotherapy.
Intravenous immune globulin or methylprednisolone were the treatments used in the trial, but there is no mention of what long term treatments were used, and with what rate of success.

I can't help but think that your gastroparesis and your falling platelet counts might be symptomatic of an underlying increase in autoimmunity.

I suggest perhaps printing out this article and showing it to your doctor. Is a consult at the Mayo Clinic a possibility?

Thanks so much I'll give it a read over and print it out! They keep doing autoimmune tests basic ones. They keep coming up normal which I'm baffled by. I'm baffled by most my tests. Would that be common?

And oh wow that is very interesting. I've been pushing all along there has to be a connection a body shouldn't just go haywire for no reason. This is a great read thanks!