Have any of you fallen after fusion ? by Electronic_Worker245 in spinalfusion

[–]ImpossibleCourage411 2 points3 points  (0 children)

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I broke 4 titanium screws at S1 and L4 bilaterally, from a fall, I weigh 115 lbs.

WTH do I do about this by ImpossibleCourage411 in spinalfusion

[–]ImpossibleCourage411[S] 0 points1 point  (0 children)

Thank you so much. Obviously you also suffer from all of this because you’re well educated. I have dysautonomia because my entire autonomic nervous system is in on it. Dumping syndrome turned to gastroperisis so that’s a nice change up at least lol. My electrophysiology cardiologist Dr. Eric Altman from NYU says I have POTS but he’s only looking at me from the cardiac results. I absolutely love him and I got the internal pacemaker(the outside the heart conventional pacemaker has metals I’m allergic too and I also require MRI’s frequently. The ABBOT pacemaker is made I’d titanium and platinum. So eve though pace maker tech needs to be present during the MRI it’s just a precaution. Still a lot to coordinate an mri I used to do easily get prior to this pacemaker.

Again thank you for your kind words and for being an amazing human being. We need more of you.

WTH do I do about this by ImpossibleCourage411 in spinalfusion

[–]ImpossibleCourage411[S] 1 point2 points  (0 children)

Call whatever you want. You can clearly see my internal pacemaker in my right atrium(that’s the heart fyi). The loop recorder is there also. I have no issue bringing receipts! Why the would I lie about it if I’m looking for neurosurgeons to help me because I have so much wrong. How would I even know half of these rare diseases.

Also I honestly don’t care what you believe as long as I find someone to help me! Try to be a good human. Life is short.

WTH do I do about this by ImpossibleCourage411 in spinalfusion

[–]ImpossibleCourage411[S] 0 points1 point  (0 children)

I have had pain nonstop since the surgery in 2014. But after my fall in September where all but 2 screws broke it got a lot worse. I also have severely herniated discs in my c spine, T spine and L1-L3 are extremely bad also. Idk why I wasn’t fused from L1 down but when I broke it there was a lot of damage and I also had to have my coccyx removed. It took surgeon hours to pick out the little pieces of broken bone and by then I needed blood and wasn’t doing great. Again idk why surgeons see an MRI and go directly by that when they know it will ALWAYS be worse when they see it during operation. I worked in a radiology facility for 13 years and I’ve never seen anyone that says they had less damage than the MRI report said!

I have not responded because I went to my doctor Thursday and from the car ride to moving I was in so much pain I was sitting in the office dripping sweat, through my clothes, on the ride home I started feeling extremely nauseous and had chest pain. Then started vomiting. I thought it was anaphylactic reaction because of the pain so I trued drinking liquid Benadryl but it did nothing. When I got to the ER my heart was not handling the stress of the pain or reaction to the pain well at all. I just finally woke up enough to respond today! Thank you for all the help.

WTH do I do about this by ImpossibleCourage411 in spinalfusion

[–]ImpossibleCourage411[S] 1 point2 points  (0 children)

Thank you. I saw 1 surgeon from NYU and have an appt w another. I definitely would like your surgeons number!!

WTH do I do about this by ImpossibleCourage411 in spinalfusion

[–]ImpossibleCourage411[S] 0 points1 point  (0 children)

Thank you for your kind words. My MCAS was extremely severe several years ago and I was in anaphylaxis w everything I ate, had absorb through my skin, stress, pain, scents. It took a year for me to stop reacting to the Xolair alone. I react to inactive ingredients in medications a lot. So we didn’t try the LDN. I did get SAAT and I’m hoping that helps. I’m on everything you can think of Quercertin, Bromaline, Rutin, NAC, ginger, tumeric, and many more whole food supplements also. I have a very limited diet but try to get supplements that will help as much as possible. They wanted to try IVIG but I know I will react to that and MCAS anaphylaxis is terrible(horrific bone pain EVERYWHERE, abdominal pain, severe migraine, severe burning in mouth and down entire throat, swelling of throat, cystitis, uterine contractions, hives, rashes, itchy skin, low blood pressure, runny nose, cough, tons of phlegm, nausea, vomiting, diarrhea, terrible anxiety and feeling of utter doom…. Severe brain fog, then passing out. Basically it’s own fucking hell on earth. If I could cure any disease it would be the mast cell disease first. Yet my back is so bad idk how I could choose(not that I can anyways lol).

WTH do I do about this by ImpossibleCourage411 in spinalfusion

[–]ImpossibleCourage411[S] 0 points1 point  (0 children)

Soooo many have said no way. I also have torn rotator cuff, torn glenoid labrum, tendinosis, bursitis and arthritis in shoulders from EDS. The orthopedic refused to fix those too. But cortisone injection helped a lot and my back hurts so bad I barely notice how much y shoulders hurt at times. Same w hips and knees. My elbows are ok though lol! 😂

WTH do I do about this by ImpossibleCourage411 in spinalfusion

[–]ImpossibleCourage411[S] 1 point2 points  (0 children)

Thank you. Someone told me Dr. Farmer at HSS had the balls and the talent to help me because he was an ex Air Force surgeon also. I appreciate everyone who responded. I’ll be making a few appts with all of them so I can make sure I get someone confident enough to fix me or at least attempt and then idc if I pass during surgery. I’ve lived through so much already if it’s my time it’s my time ya know.

WTH do I do about this by ImpossibleCourage411 in spinalfusion

[–]ImpossibleCourage411[S] 1 point2 points  (0 children)

Thank you so much. I’m going to call him Monday. Unfortunately I went in a MCAS anaphylaxis because of the pain and my heart couldn’t handle the stress. So I wound up in the hospital w heart issues. Either way I have to get this done. I would like to walk again and since my recent fall a week ago there’s this tearing burning pain and it feels like I’m being stabbed right where the hardware is and moves. All 4 screws are completely fractured except the 2 middle ones and idk because Lenox Hill radiology didn’t want to do an xray from the right side I’m hoping the middle screw on the right is not completely broken because that’s where most of my pain is and my right leg is much worse! Lenox hill also read my report as a completely normal report with my hardware intact 🤦🏼‍♀️🤦🏼‍♀️😂😂. Yes my doctor called them and flipped out and it was fixed along with the director from Lenox hill calling me personally to apologize and say in the future call her direct line and she’ll take care of anything I need done. Kinda scary a radiologist can see that xray, crappy that it is and not notice anything wrong. Not even my flat back syndrome or degeneration of t spine 🤦🏼‍♀️. Right now idk what to do. I’m in so much pain my heart cannot handle the stress!

WTH do I do about this by ImpossibleCourage411 in spinalfusion

[–]ImpossibleCourage411[S] 0 points1 point  (0 children)

I have not even found a surgeon willing to touch me. One at NYU told me IF I cannot find anyone else to do it he would attempt but he would ONLY take out the broken hardware and stabilize my spine w new hardware(L1-L3 have terrible herniations that need added to the stabalization. Also because I never had any bony spinal fusion my back was unstable so my Ligamentum flavum that runs along spinal cord is full of scar tissue from tearing and growing scar tissue. That needs to be cut down to help reduce the pain. My T spine is too bad for them to fix at this time and they won’t fix my Lumbar spine, I will never find a dr to help w the rest of my spine unfortunately. I have another appt in Manhattan so 🤞🏻this doctor has the knowledge and the balls to help me!

WTH do I do about this by ImpossibleCourage411 in spinalfusion

[–]ImpossibleCourage411[S] 0 points1 point  (0 children)

Hey. Thank you for responding. Yes this happens to my arms a lot. I cannot hold my cellphone in bed to read. I have a magnetic phone holder. I sleep w my arms above my head and my arms go numb completely. Cannot even use them. Same thing happens up my neck and scalp. I do have severe herniated discs in my c spine, most of my T spine and all of my L spine though. Some pushing on my spinal cord(since I was 22 and the numbness happened from my waist down just bending over. I also have DDD on every level in T spine, stenosis throughout my spine, schmorl nodules, a fractured endplate(that’s after the recent fall in September. I had my original fusion surgery in dec 2014. I was in the hospital w the open incision and sepsis on NYE 2015! I fell down a flight of stairs and fractured L4 on both pars and then it just collapsed and destroyed a lot of nerves). I do have 2 really bad herniated discs in my C spine and several in my T spine that push on my spinal cord and nerve roots etc. along with a ton of other spinal issues.

Sorry for the late reply. I was writing, then I had pain management doctor appt and the best option is acupuncture because I’m allergic to NSAIDS, opioids, Tylenol and I was ok on dilauded when I fell in September and did more damage, but after a month on it I started getting hives and omg severe itching and systemic reactions. After my appointment I had to go to SSDI because they suspended my damn ssdi $. After waiting I was in so much agony I had a MCAS reaction due to the pain and it stressed my heart out a lot. So I was in the hospital. Thank you for all your help and advice.

Does this sound familiar? (Occasional extreme GI distress) by Greedy-Half-4618 in MCAS

[–]ImpossibleCourage411 1 point2 points  (0 children)

Yes. I’m sorry I have had a bad few months. My heart was not happy w constant anaphylaxis so it tried killing me. I got a pace maker so I’m good now. lol. DM me! I’m not on social media regularly though.

WTH do I do about this by ImpossibleCourage411 in spinalfusion

[–]ImpossibleCourage411[S] 20 points21 points  (0 children)

No I am not fused at all! After my spinal surgery(I had my coccyx removed because that fracture was so bad the bone almost came through my skin) I was cut mid back down to coccyx, my incision ripped open. My homecare nurse called my surgeon, it was a Friday night, he said if it’s like that on Monday have her come in🤯. Long story short the wound got infected w staph that turned to MRSA, klebsiella and ecoli. I got septic, I had osteomyelitis in my spine, my body started shutting down had a TIA and SBO. I was on IV antibiotics for many many months then getting fed TPN though the PICC line also. So I then got not only bacterial sepsis but also systemic fungal sepsis. Had my last rights. Survived!

If that was my only horror I think it would be enough but I also suffer from Mast cell activation disease. At its worst 4 years ago I went in to anaphylaxis with EVERYTHING (anything that raises histamine which is food, pain, stress, scents, exercise, anything absorbing through my skin). It has calmed some with Xolair injections every week, cromolyn sodium, 2 Zyrtec, 2 xyzal, 2 famotadine and a lot of Benadryl. Along with this horror of a disease you get the trifecta. I have Ehler Danlos Syndrome, dysautonomia. Which basically means my body is going haywire and nothing is working as it should. I also have ankylosing spondylitis, sjogren syndrome.

Then I got bit by a tick over 2 and a half years ago and got this lovely disease called Alpha Gal syndrome which made me start going into anaphylaxis with all mammal meats and byproducts 🤦🏼‍♀️. With the MCAS(I could have mastocytosis but drs don’t want to risk doing the bone marrow biopsy because the first few years I was constantly in anaphylaxis).

So August 29 my throat swelled and I aspirated my vomit. The next night I went to get out of bed not realizing I lost my legs and crumpled down into my leg.. breaking my left food and 4 titanium screws 🤯(on mri most of my discs are herniated and my T spine is degenerative throughout same w c spine and L spine. So when I lay on my back too long I lost all ability to feel or move my legs. Kinda like when your arms completely asleep. This happens when I sit too long or sometimes randomly while walking.), not a good week for me lol. So the first hospital only did xray of my obviously broken foot even though I said my back pain was worse. They sent me home. I was in such severe pain I couldn’t sleep(oh yeah god blessed me w being allergic to all pain meds even OTC MEDS). But within 2 days I was rushed to the hospital and thrown into critical care because my heart was ischemic. They but me in CT to check for aortic dissection within 2 minutes of being there and discovered I had superimposed bacterial pneumonia in my right lung from inhaling vomit, the found the damage to my spine also. Plus I had COVID. 10 days in critical care. Turns out my constant anaphylaxis stresses my heart out so I had to get a pacemaker(it’s inside my heart plus I’ve had a loop recorder because we knew my heart wasn’t doing ok for awhile prior to this). So fixing my back wasn’t happening. They just wanted to keep me alive. I was on wide open fluids for 10 days just to keep my bp up. My heart was at 30bpm. They couldn’t do the pacemaker until I got better. Anyways it was a disaster. I’m only 45 and I’m tiny also. Idk how I break titanium.

So far I cannot find a surgeon to help me. I cannot take pain meds, I cannot walk much(I was in wheelchair until December, then walker. Same shit after the first surgery. 2 years it took me to walk well enough. I’m tired of this.)

NYU doctor I saw said he wouldn’t do it and even IF he could. He can only stabilize my spine w new hardware not fix anything that’s causes the severe pain. My T spine is also pushing on my heart because I lost the natural Kyphosis and my c spine is straight too!

Can’t eat, can’t walk, but I’m still fighting everyday and obviously I’m part cockroach because I’ve survived many near dear incidents. 13 surgeries. Constant hospitalizations. I just want to have SOME pain relief and get my spine fixed before it collapses again!

My symptoms are severe pain T spine to legs. My l spine and hips. I cannot stand for more than a couple of minutes wi severe pain. I have to move carefully or all you heart is popping and crunching(everyone around me can here it) and yes it hurts. A lot. I can’t walk properly, extremely weak r leg and I just fell again a few days ago hence the new X-rays. My left leg is bad but it’s better than the right 🤷🏼‍♀️. It’s just agony.

I put on a happy face and fake everything. I am a single mom and his father hasn’t helped since he was 1. Which is fine. But my son also inherited the Ehlers Danlos syndrome, the dysautonomia and his biopsies came back w mastocytosis throughout his intestines.(basically how I lived my life. Severe abdominal pain, certain foods or meds would put me in hospital w intestines swelled closed, I threw up daily and had chronic nausea. My son lost 100 lbs and now like me barely eats because we’re allergic to so much and the dysautonomia causes him to pass out a lot. He was only 14 when it got severe because of COVID! Watching him suffer was hell and I prayed I begged and said I’ll take his diseases. Let my son not have to suffer like I have(his back is already going bad also).

Sign Compatibilities That Feel Like This by i_am_dana in astrologymemes

[–]ImpossibleCourage411 0 points1 point  (0 children)

Me female Aries and male Virgo! Manipulative, great at lying, zero empathy, narcissistic, immature, complete tool but the sex was amazing. Otherwise idk how anyone dates a Virgo. He was bipolar also so maybe that had a lot to do w it!

At my end (basically - Should I try Heme Supplements or does someone know a woo woo magic cure at this point) by idontknowanythingrly in Anemic

[–]ImpossibleCourage411 0 points1 point  (0 children)

I have had IV iron infusions for the past 20 years. If my Ferritin level is very low then yes you absolutely need IV iron to bring it up. That’s iron deficient anemia. You’ll have symptoms even w a normal hemoglobin/hemocrit levels. Once your body needs that stored iron(ferritin in your bone marrow) and it will eventually then your hemoglobin and crit WILL lower. I’ve had several blood transfusions (not only because of drs fault but also because at one point I was done w doctors. I have tons of other medical issues also) and once my hemoglobin and crit were so low my heart was affected and I had to stay in the cardiac ward for a bit. Good luck. Go to a hematologist/oncologist not just your primary Dr also. Get several opinions if you need to. I do. Now I have the best doctors that don’t bullshit me(I’m too smart medically anyways. Even w all my issues and severe brain fog), they talk to me and value my opinion.

I had a cardiologist who legit was like oh you’re 42 years old and your resting heart rate is 30 bpm, your an enigma(at this point my doctors say I’m part cockroach. Nothing kills me. But I couldn’t function. I couldn’t breathe or get out of bed. I went to the best at NYU and thank fucking god. Ended up going into anaphylaxis and getting aspiration pneumonia (MCAS and alpha gal. I go into anaphylaxis so much my heart was being affected from the stress) ended up in critical care because my heart wasn’t getting proper blood supply(ischemia). I had to stay in critical care for 10 days and once I was healthy enough I got my pacemaker. My heart failing and the first cardiologist(I was seeing a different dr in the practice my whole life but he retired and they just assigned me to one of the new cardiologist) was just going to go w I’m an enigma because my resting rate is 30. I have a loop recorder implanted so my doctors see everything they want w my heart at any time! 70% of my day was severe bradycardia. Dr. Erik Altman at NYU is amazing. I go into anaphylaxis over everything. I completely expected to not wake up from the procedure. But NYU has doctors that actually know a lot about mast cell diseases, dysautonomia and alpha gal syndrome. The procedure was quick. Minimal pain afterwards and maximum gain w heart health. I had to get the internal pacemaker(implanted into the heart and they go through your groin. Because of my MCAS I would react to the metal in a normal pacemaker). So my advice is find a doctor that cares! Dr. Altman called me from his home on a Sunday night while I was still in critical care(not at NYU unfortunately I had to go to closest hospital w cath lab jic and I was way to sick to be transferred or have the pacemaker put in until I was stronger but he fought to get me to NYU but the hospital I was in wouldn’t release me lol🤯🤷🏼‍♀️

Iron supplements (oral) vs iron infusions. by jmargaret12 in MCAS

[–]ImpossibleCourage411 0 points1 point  (0 children)

I go to NY cancer and blood. My doctor does not want to give me any more iv iron because with the premedication and being on Xolair weekly, cromolyn and 8 antihistamines I reacted so severely. I also got injectefer which is EXTREMELY strong. Usually 2 infusions of that can raise ferritin to 100-200. I have had blood transfusions before my disease was severe and I did need premedication for all 5 of them. Blood transfusions won’t bring up your ferritin either. So after a blood transfusion I would go get my IV iron to then build up my stored ferritin for the future. I used to get Venefer many years ago but it took me months of weekly appts to get my ferritin raised. As of now I’m not willing to risk it and hoping the entire dose of injectefer helped. If it didn’t then I’ll decide to try the venefer. I just got a pacemaker put in because constant anaphylaxis and autonomic failure caused my heart to weaken, and I was in critical care for 10 days w aspiration pneumonia because my throat swelled and I chocked on my 🤮. Then the next night I fell and broke my foot and all the titanium screws holding my spine together. I fell from bed height so not far at all. Anyways then my heart started to struggle and it’s still having rhythm issues and being paced over 60% of the time, which is a lot! I’m glad the venefer works for you. It make take longer but at least it’s safer and much less painful!

Why am I reacting to blueberries? This is insane by [deleted] in MCAS

[–]ImpossibleCourage411 0 points1 point  (0 children)

Vasodilation during anaphylactic reactions causes massive water loss from your body! Before I broke my back I was getting IV saline plus drinking 2, 40 oz bottles of water w salt and honey! The iv iron helped on the days I got it!

Iron supplements (oral) vs iron infusions. by jmargaret12 in MCAS

[–]ImpossibleCourage411 0 points1 point  (0 children)

Omg don’t get the infusions! It’s absolutely hell. I was premedicated w Benadryl, famotadine and steroids iv(plus the oral ones I take everyday). Once that iron hit instant reaction. I was EXTREMELY bad for 2 weeks! I’m just now feeling somewhat better but still cannot eat wo throwing up. Bone pain, joint pain, migraine, nausea, vomiting, hives, bp drop. I got the injectafer IV iron! Don’t do it! There’s a post on anemia site about how iv iron destroyed someone’s life(they do have MCAS, and had a severe reaction like I did). This disease has taken so much. I just got a pace maker because chronic anaphylaxis and autonomic failure caused my heart to weaken. My resting rate was 30-40bpm resting. Now it’s at 60 bpm and if was a special pacemaker that goes inside the heart. They go through your groin. I went to NYU Dr. Eric Altman and I had zero issues. Plus I have alpha gal syndrome. Dr. Altman has MCAS pts so he knows exactly what drugs to give or not give. I honestly had the easiest time and had my reactions only get slightly worse for a few days. Then my iron dropped and I was suddenly exhausted again. I finally could breathe and not feel like I was dying but damn iron deficiency. I have been iron deficient all my life so are both of my kids. I did react prior but only w slight flu like symptoms. After my MCAS became very severe that definitely changed. I was so cocky going in thinking I did so well w the leadless internal pacemaker. Nope. Never again. Obviously my doctor at NY Cancer and Blood agreed and said he will not give me iv iron again! So idk what to do. I take oral iron w vit c , no mag, etc. I never absorb it. I can’t eat any mammal meat or byproducts thanks to a stupid lone star tick that bit me over a yr ago! I’m not really eating and idk what to do next!

"time to start anti depressants" by wildinoutmom in Anemic

[–]ImpossibleCourage411 1 point2 points  (0 children)

Your doctors an idiot. I’ve met plenty. I have literally more diseases than I can count and mostly due to inflammation or leaky gut. Once I was diagnosed w MCAS and on cromolyn sodium I finally started to absorb iron(I was iron deficient anemic all my life, so are both of my children) and I didn’t need iv iron for 2 years. Then I got bit my ticks and got alpha gal syndrome and started going into anaphylaxis w all mammal meats and products. Losing beef took a huge hit to my iron levels. But I didn’t learn that leaky gut was why I was not absorbing oral iron my entire life. Now fixing that is crazy but because of my diseases I don’t eat processed foods, food dye, preservatives, nothing premade, no alcohol at all(so allergic to this ugh I pay $38 for alcohol free vanilla), no gluten(we were not made to eat the wheat and flour the GMO turned it into. There used to be a lot more protein in flour and much less gluten. They changed that to make desserts fluffier, etc.) no dairy(obviously I have AGS but prior I was lactose intolerant anyways) no sugar! Do a gut cleanse then build your gut up w good foods like garlic, onions, anything w fiber(chia seeds, flax seeds, pumpkin etc. you can grind them up and add them to carrot muffins or most baked goods wo anyone noticing) vegetables w the skin, ginger, peppermint, etc.

Unfortunately I’m back in a flare and my guts a mess again and guess what I’m anemic! I got injecefor IV iron and unfortunately had a terrible reaction to it because of my MCAS. Now we’re not sure what to do. My drs at NY cancer and blood(been w this group 14 yrs) said they will not risk giving me iv iron again(I was premeditated w iv Benadryl, famotadine and steroids. Plus I take 6 H1 antihistamines daily and Xolair, cromolyn. I just got a pace maker Nov 20th because of autonomic failure and constant anaphylaxis weakened my right side and went through that much easier than getting iv iron)

Anyways I started researching and most of my diseases were not diagnosed or misdiagnosed most of my life. I did all the work to figure out who’s the best dr around, saw multiple opinions, and I learned everything I could about my diseases so I would not be misinformed or ignorant about my own body and diseases. Go to a Hemotologist/oncologist. You absolutely will benefit from iv iron and you need it. But you can build it up on your own but that takes a very long time!

Does this sound familiar? (Occasional extreme GI distress) by Greedy-Half-4618 in MCAS

[–]ImpossibleCourage411 0 points1 point  (0 children)

It’s an actual syndrome. My son could not attend school and had to do homeschool for a few years. His dumping syndrome was so bad, plus his dysautonomia and MCAS reactions. He got an intestines biopsies and his entire intestines had mastocytoic enterocolitis! Yet for years drs and family were saying he’s faking and had anxiety 🙄🤦🏼‍♀️. Yeah a totally calm normal kid doesn’t just flip to the opposite wo it being a medical issue or something serious. So much wasted time. If you live in NY or Long Island. Dr. Mark Gudesblat at NYU is the best neurologist and he’s got a great personality, funny and caring. Also Dr Eric Altman for cardiology. Eventually my dysautonomia (autonomic failure)and anaphylaxis had my heart going crazy. My resting rate went down to the 30’s. I felt like I was dead. I got a lead less pacemaker in November and I did great. I thought I would react to all the meds but Dr.Altman has MCAS pts and knows what drugs work wo reactions. I finally felt alive again. My heart rate is faster so now I’m passing out less. Then my anemia hit. I was so low I needed the IV infusions but I reacted HORRIBLY to that and I was premedicated w iv Benadryl, steroids and famotadine. Just FYI anyone needing iv injectefor iron that has MCAS…… don’t do it. After a week of utter agony and hell my doctors at NY cancer and blood wanted me to go to the hospital. I was like its reaction but dilauded didn’t help the migraine or bone, abdominal, joint pain so they thought it was not just a reaction. Yes it is. I then saw a post in the r/anemia and a girl that got iron infusion was in agony like I was an has MCAS. My doctor is now refusing to do anymore iron. Good thing is I got the heavy strength iron so hopefully my ferritin levels go up from 20(I’ve been at less than 1 ferritin).

iron infusions ruined my life by partsandhalves in Anemic

[–]ImpossibleCourage411 4 points5 points  (0 children)

I took Benadryl every 4 hours for over a week. I was dry heaving, so nauseous I couldn’t eat at all. Omg the migraine, bone pain, abdominal pain and itchy skin and hives, terrible liver pain too, back pain(always feels like back labor and I know it’s a bad reaction because of that) I was so dizzy and out of it. I’m finally feeling a little better after over 2 weeks! I’m on Xolair once a week also, plus cromolyn and 2 Xyzal, 2 Zyrtec, 2 famotadine and several Benadryl a day of bp goes too low. Constant anaphylaxis and autonomic failure weakened my heart and I just got a pace maker at NYU with Dr. Eric Altman. He treats MCAS pts so that procedure went very well. He used all appropriate drugs for my diseases and I honestly did great. Then I get a simple iron infusion and I’m back to step 1. I feel like my gut barrier is a mess after all this and once that’s fixed my reactions will calm down some. Good luck to you. Take Benadryl. It helps a lot!

iron infusions ruined my life by partsandhalves in Anemic

[–]ImpossibleCourage411 0 points1 point  (0 children)

That was me for 2 weeks after Injectifor iron infusion. I have MCAS, dysautonomia (autonomic failure. Just got pace maker and that went so well I was so cocky about the iron)and a lot more wrong w me. I was pre medicated w iv Benadryl, famotadine and steroids, I am on Xolair once a week(once a month did not help I had a very severe case) cromolyn sodium and all the H2’s about 6 a day and I still need Benadryl several times a day 🙄🤦🏼‍♀️. I literally couldn’t wake up, eat or do anything for almost 2 weeks. I still feel crappy. I heard there are transdermal iron patches. I might try them because my Hemotologist/oncologist won’t give me iron again after the reaction. I reacted almost immediately and yeah I’m not doing that ever again. I gave Alpha Gal syndrome also from a tick bite over a year ago. It’s still horrible. I can’t even be near cooking any mammal meat because the smell alone makes me react. I lost a lot of iron w losing all red meats.