Hi, I have been a member for a few months now and have learned more than the last 10yrs. I’ve spent with doctors. I have been diagnosed with multiple autoimmune diseases and like many of you have overlapping symptoms. I have been having a new problem the last couple of months. I have been having transient vision loss. I have been to all the docs. had tons of tests on and on. When I mentioned to this group that I had in the past been diagnosed with FMD right away someone gave me the correct path to take next. Once again I took what info I could find to my dr. and asked pointed questions there was a lightbulb moment. The symptoms (new) were being causes by the FMD. Fast forward to today and I’m being told I need to have a temoral lobe biopsy, a corodid angioplasty, and some other procedures I can’t even remember. There is always the "we just aren’t sure) yet let’s do another test to rule out bla, bla, bla. My biggest concern at this moment is the fact that I have had double femoral artery bleed that required 10 transfusions. I have had other bleeding episodes that have required transfusions. I am terrified of the diagnosis I’ve been given but more so of the procedures they want to do. I truly need to know which is worse living with all this crap at home or continuing to be a guinea pig. At home I can make myself comfortable with meds and peace and quiet. Just need to vent. Thanks
I’m so sorry. What is FMD? I have a retina problem that might be related. I don’t know how to answer your questiOn, but I do know you should always get at least a second opinion before any big procedures/surgery. Don’t rush into things you are not sure of. Get all the facts, the opinions of more than one doctor, ask someone very close to you if you feel yOu need additiOnal helP and trust your instincts. Wishing you strength, wisdom and better health.
You have your plate full, my friend! I'm so sorry you're going through this. I am absolutely out of my depths with this. I'm not a medical professional in any way, so to comment on this would just be wrong. I can certainly understand your concerns, and would be asking myself the very same things you are wrestling with.
Just what do they hope to find with a temporal lobe biopsy anyway? Is your Internist/GP someone you can sit down and talk to? I think this would be my go to guy with this. They can always hear your concerns and questions, and do the research and have you back for a follow up.
I will always listen to you vent, do all I can, but just don't know enough to even begin to tell you anything about this. I hope that you understand! You really need to talk to someone you trust who has been through medical school.
Sending you some love,
Nomad, fmd is fibromuscular dysplasia which from what I understand affects the arteries in your body. It can more or less thicken the walls of the arteries restricting blood flow. I have already had a renal artery that was all but blocked. They figured this out when my blood pressure was running 210/4-1-1400. I was hospialized the artery was stented and my pressure came down. During their supposedly minor procedures I had a double femoral artery bleed.They are now saying that the blood flow to my optic nerve is restricted and it’s due to my corodid artery bein partially blocked. The worst part at least the most painful at this time isthe pains in my legs most likley due to some blood flow being consricted the awful headache and the pains
Oh dear…I’m so sorry. Please get a second opinion on any procedures and re read SK’s post. Prayers and good thoughts headed your way.
Sadmay and Nomad, are either of you seeing a vascular specialist?
Sorry my message/post got sent before I was done. They want the temporal lobe artery biopsy to see how thick the artery walls are becoming. I have been told that this fmd could most likley be the cause or at least one of the awful digestion prpblems. As you know sogrens affects way more than was first thought.I have gotten two drs. Opinions and both are in agreement that at this point these procedures are necessary.They have told me that these arteries not checked could form clots and just become blocked.along with the other diagnosis it just gets overwhelming.
No, the only vascular problem I have is Raynaud's and it's just not that bad to see a specialist. I have vaso-dilators to take if I need them, but seldom need them.
Oh sorry, once I hit the button, realized that you weren't even asking me!
worries SK all imput and questions are welcome and yes I have an appointment with a vadv up at surgeon on the 14 of april
PLEASE READ THE FOLLOWING RESEARCH PAPER OF TRIALS DONE IN CHINA:
Allogeneic mesenchymal stem cell treatment alleviates experimental and clinical Sjögren syndrome.
Sjögren syndrome (SS) is a systemic autoimmune disease characterized by dry mouth and eyes, and the cellular and molecular mechanisms for its pathogenesis are complex. Here we reveal, for the first time, that bone marrow mesenchymal stem cells in SS-like NOD/Ltj mice and human patients were defective in immunoregulatory functions. Importantly, treatment with mesenchymal stem cells (MSCs) suppressed autoimmunity and restored salivary gland secretory function in both mouse models and SS patients. MSC treatment directed T cells toward Treg and Th2, while suppressing Th17 and Tfh responses, and alleviated disease symptoms. Infused MSCs migrated toward the inflammatory regions in a stromal cell-derived factor-1-dependent manner, as neutralization of stromal cell-derived factor-1 ligand CXCR4 abolished the effectiveness of bone marrow mesenchymal stem cell treatment. Collectively, our study suggests that immunologic regulatory functions of MSCs play an important role in SS pathogenesis, and allogeneic MSC treatment may provide a novel, effective, and safe therapy for patients with SS.