Micro Blood clotting

[jetjetjet]

Do Any of you have or have seen more micro clotting , kelly in texas has given me some - just wondering is there more out there .

Thanks C & J in N H

[ndstephens49]

Hi!

Yes, first microclotting started in left lower jaw in 1988 causing avascular necrosis in jaw bone which led to me developing trigeminal neuralgia (nerve pain in jaw).

Next was some chronic renal failure due to microvascular clotting. Now I bounce between stage 1 and stage 3 chronic renal failure.

3 years ago I developed congestive heart failure yet I didn’t have one blocked coronary artery. It was called ‘nonischemic’ heart failure due to microvascular clotting.

Nancy in West Virginia.

[Tim_Thorpe in reply to ndstephens49]

Had a major stroke 2011 plus many mini strokes now in the last couple of years found out I have micro clots on brain due to my aps being so strong 🤐having a mri this month to see if I have had any more on my brain 🧠 since last mri scan

Good luck 👍

[MaryF Administrator]

Years a go I think I had an issue with that, but not for a long time, it was after I came off Fragmin injections after my last pregnancy. MaryF

[jetjetjet]

My thought is micro clotting in other parts of the body such as legs -arms - feet -etc. . my most concern is the nervous system .

[GinaD]

As you well know, the issue of microclotting is validity. If there is no evidence which a 2nd party can see, then our evaluation conclusion that this or that pain correlates with INR #s and is therefore probably a micro clot is often — usually? — discounted. Sigh. As Dr. Hughes has said, “The patient doesn ‘t fail the test; the test fails the patient.”

[jetjetjet]

Thanks G

[PepperT]

I have very poor sense of smell now due to microclot

[KellyInTexas Administrator]

Are you under the care of a neurologist?

1. Look up micro clotting in the brain and APS. This is what my neurologist and Rheumatologist linked my seizures to.

I have partial complex seizures of temporal lobe- 11 times more likely with APS.

I did not even know I was having seizures. But I was sent to neurologist for autonomic dysfunction for abdominal payslysis- ( ileus.) - seen in scans. Rushed to multiple surgeries to check for adhesions. now we know it was clotting to those tiny vessels that supply nerves.

The neurologist suspect seizures were interfering with brain/ gut axis in communicating . Yes- but only partly.

But I do think you need investigating for seizures.

[jetjetjet in reply to KellyInTexas]

Yes i have a Neuro but he is basically useless so i am looking for one that is in my insurance coverage hosp. I have coverage in 2 different hosp. but i need to get into researching them so far i haven't seen anything or anyone as of yet. I have to be careful not to try to change to many times as they will look at you as just trying to keep swapping and they can make it a problem . Kinda getting labeled as not wanting to comply so i am waiting -because both hosp. are learning facilities with Gov. money there i get the ins. and also there is turn over in Doc's . so i am due to check them again - I am about to lose my PCP as he is done his residencey and is moving on -- he told one of my nurses he wil miss me and has learned so much to take with him . That is satisfying and makes me feel good that he is young and is well aware and educated about us so this makes me feel i have made strides here for our cause. June he wil be leaving and so i start a new PCP - My currant PCP and my supervising nurse are working now for a replacement that they see as a good fit for us .

[KellyInTexas Administrator]

Also... while on neurology- if these tiny vessels to nerves are affected- I’m going to ,” go out on a limb” obviously a pun IS intended here- and guess you may be finding yourself off and on a little off balance. I was - and sometimes still can be.

Dr Hughes talks about fluctuating myelopathy. My reflexes are too brisk. ( noted by my MS expert neurologist although I do not have MS.) My nails do not grow properly. I do NOT have transverse myelitis- I was scanned for that- no lesions. It’s likely fluctuating myelopathy. It affects the blood supply to those tiny nerves when blood sludges.