85Th Hospitalization In 6 Years. Ugh!

[LindaJoy]

Hi, everyone. I'm able to post again, so it's good to talk with all of you. I've been in the hospital for a week now, with my usual reactions to eating. I know you all are probably so tired of hearing about this, maybe as tired as I am of living it, but here I go again.

Julie, I was reading your post with interest, about your visit with Dr. Abdullah. You sound a bit like me in that, you eat, and you go cold and shake. I do that, as well, as part of what goes on with me when I eat, but I then go to extremes, with all of the following, give or take a few of the symptoms:

cold and tingly in feet and lower legs

legs stiffen

feet turn blue

face turns red (I'm caucasion, so I end up red, white and blue. Just salute me when I have a reaction! )

I start to shake all over

I may sweat

I go into tachycardia (last one clocked at 185 bpm)

blood pressure raises

abdominal and lower back heaviness and pain that may go down my legs

right leg may go numb and tingly (pinched nerve in back when this happens?)

dry heaves / nausea

may have some itching

I feel fluish and weak and faint

I can have other symptoms, as well, but those are the main ones. I have been thoroughly tested for anaphylaxis / mast cell by Dr. Weiler at Mayo in Rochester--negative. I've been tested for carcinoid and pheo--negative. I've been tested for porphyria and celiac--negative.

The doctors at this hospital have been great. They think it's autonomic dysfunction and tried me on propranolol. I had a bad reaction--high bp, got angry, sweaty, couldn't sleep. So now I am wearing a clonidine patch. So far, so good. No better, but no worse, which is a good start.

Do you all think this could actually be some form of Dysautonomia? They did orthostatics, and they were good. My bp goes up when I'm up. I still pool blood though, terribly, in my arms and legs.

They're wanting to send me to University of Michigan or Pittsburgh for autonomic testing and care. Are these good places for that?

I'm in Ohio, so any good docs to see for this would be great. I've been tested at Cleveland Clinic by Dr. Fouad. I was found to have POTS, but she doesn't do follow up care. I've seen Dr. Shields at CCF, but he's given up on me. Dr. Grubb is a year wait. Anyone else?

Thanks, everyone.

Lindajoy

[issie]

Do you have mast cell issues? I don't know which Julie you're referring to - but, Mack's Mom - Julie hasn't been here in awhile - she's on another forum now. But, there are quite a few threads going right now on MCAS (used to be called MCAD) and also histamine sensitivities. Take a look and see if that might give you some answers.

Issie

[LindaJoy]

Hi, Issie. Yes, I've been tested for the mast cell issues, both Mastocytosis and Mast Cell Activation Disorder. I've been a member of a support group for Mastocytosis for many years. I've been tested very thoroughly for mast cell issues, by Dr. Castells and Dr. Weiler, plus other docs over the years. I've had the bone marrow biopsy twice, the blood and urine tests following reactions several times, and I've been on the medications, both to try and control symptoms as well as, as a diagnostic tool. I was on a mast cell stabilizer for six months and it didn't improve my symptoms. I was on another for a little while, ditto. Plus, I can do morphine, the most toxic mast cell destabilizer in the medication world, I'm told, with no trouble, so....mast cell has been ruled out. Ugh. I do take three antihistamines a day, plus am on a corticosteroid three times a day, for Addison's, that will also help with allergy. I'm still a mess when I eat.

I appreciate your thoughts, though. Please keep them coming. I appreciate all leads!

Lindajoy

[issie]

Ugh! Oh well, really sounds like that could be the issue. But, sounds like you've had good docs look into it for you. Not sure what else. Do you take good probiotics and enzymes? Maybe, there is a gut ecology issue.

Issie

[Katybug]

LindaJoy,

I have similar, although less severe, issues. I went to an immunologist is December thinking I had MCAS. What we have actually found is that one of my complement proteins, C4a, is extremely elevated. Complements C3a, C4a, C5a are all anaphylotoxins and cause mast cell degranulation among other reactions that cause POTS issues like smooth muscle contraction and vascular permiability. Because my C4a is so high, I have all the symptoms of MCAS, but my issue is really coming from upstream in my immune system. My mast cells are behaving just like they should, but, my C4a is not.

Elevated C4a is associated with chronic Lyme disease and several inflammatory connective tissue disorders. Many of these inflammatory connective tissue disorders have the kind of symptoms you and I (and many of us here) experience.

Maybe they should test these specific complement proteins if they haven't. It could point you in a direction for diagnostics. Please also note that just C3 or just C4 is not the same test as for C3a and C4a. Some docs don't understand this and the labs need to be watched on this point too.

Hope you get out of the hospital soon! Feel better.

Katie

[issie]

Interesting Katie, does mast cell treatments help you since this degranulates the mast cells too? What are they doing in that it is an autoimmune reaction?

Wish you would post this on some of the other sites we are talking about - I just posted that NPY and NE are released at the same time and can be markers for mast cell issues (I learned this on another forum, and researched it and found this to be true). Be nice to have this as another reason on that site too - just in case someone doesn't see this one.

Thanks for the info.

Issie

[Katybug]

The immunologist started me on Hydroxyzine (H1) and Cimetidine (H2). I does help with some of my symptoms such as the daily hives and rashes I experienced. He actually did that prior to us even knowing the C4a results because I had a photo journal of a month's worth of rashes and hives that I showed him on our first appt., so he didn't wait around to do diagnostics. He's kind of old school...if it looks like a duck and it sounds like a duck, treat it like a duck. I lucked out because he spent many years at NIH researching immune complexes so he is very familiar with mast cell and complement function. Then we did the bloodwork for the C4a and it came back high (what made him run this test was an old test that was super high that had been conducted by a Lyme Literate Doc in 2008, most docs don't run this test).

We are now "tinkering" with Prednisone to address the elevated C4a. I have also had a biopsy for these strange bumps I get on my hands come back confirming our diagnosis of immune mediated inflammatory connective tissue disease, so that makes us even more comfortable with trying prednisone. High dose was great until I had a bad reaction to it, so now we are working at a low dose and easing our way up to see where my tolerance holds out and I get relief from my symptoms. The high dose made all my symptoms go away. Now we just need to find the balance. If we can't get a good balance on the prednisone, then we will be looking at something like methotrexate or anti-TNF drugs (let's hope it doesn't come to that!) But, he is pretty sure I will need to get on an immunosuppressive treatment plan and stay on it for the rest of my life.

[CharmedLinz]

Katybug is onto something with the complements.

I was going to say suggest to them another direction........ have you been tested for Cryoglobulinemia??? It can mimic some types of Porphyria.

That was my instant thought with the cold shaking and blue feet.

[Katybug]

Here is a good paper on Complement Activity. P. 518, Table 5 shows diseases associated with elevated complement activity:

http://www.questdiagnostics.com/hcp/intguide/Immuno/Complement_Glovsky.pdf

[delphicdragon]

I'm sure you've probably tried this, but I find that my pooling is really bad too, due to my EDS. Often I pool in my stomach and legs. I'm much worse after eating too. When you eat the blood flows to your stomach to help you digest ( hence the blue legs, heaviness in the back, numbness/ tingling) and if you're pooling so much, blood runs away from your heart and then you get tachycardia/ nausea/ etc. Perhaps eat just a bite of some protein. (I find carbs can often trigger worse pooling), wait 15-20 minutes and have another bite. Very slowly so the blood doesn't all rush to your stomach. I know it's not a long term solution, but maybe it'll help.

Midodrine helped me, as did IV saline. If my blood volume is high enough I can eat without symptoms. However, I still can't do high carb or high sugar. That's a setup for severe nausea and pooling.

Good luck and glad the doctors are helping this time.

Sara

[LindaJoy]

Thank you, everyone, for your suggestions. Katy, I'm very interested in these anaphylatoxins you mentioned. I've not been tested for those before. The plain ol' compliments, yeah, but not these. My husband called over to Cleveland Clinic, where I had the compliments tested years ago, and the doc's secretary said they don't even test for regular C5, let alone the C5a. We mentioned this stuff to my in-hospital docs earlier, and he said he could test for them. We'll see.

Sara, I wondered about all of the blood pooling, too. I know I do that, but man, when I go into what looks like anaphylaxis after eating, I tend to think that a bit more is going on than blood pooling. It's probably happening, I know, and adding to problems, but I think something else is going on, too. Thank you, though, for the information.

Issie, I know, I'm a mess! But, if I have anaphylatoxin problems, I can see where I would look mast cell but it not be. Hmmm....

Katy, who is the doctor who diagnosed this in you? Where are you, if you don't mind my asking? This doctor sounds like he's worth his salt, that's for sure.

Also, you saw the list of symptoms I have after I eat. Are you saying that you do these same things, too, when you eat, just not as severe, due to this condition?

Are there other triggers that cause this type of reaction when you have this condition? I've been trying to research it on the internet since I read your post this morning, but I'm not coming up with much. I was interested, though, in the Wikepedia information that said elevations in the anaphylatoxins can "cause a shock-like syndrome" that looks like an allergic response. That sounds exactly like me!

Again, thank you, everyone. I'm so glad when I'm able to talk with all of you. You've become my life-line through all these years, physically and emotionally. I thank goodness, and the good people here who started this site, that you all are here!

Lindajoy

[Katybug]

LindaJoy,

I get all of the same symptoms except for the increased BP. My symptoms are severe enough to be disabling but have not put me in the hospital (that could be my stubborness and not my symptoms.) Eating does often make it worse, especially dinner. I think my body is already exhausted by the evening and then has an even harder time with food. Here is actually a list of all of my symptoms:

Migraine Dizziness Joint Pain

Short-term memory issues

Word Search Tremulousness Chest Pain Chest Compression

Saying wrong word

Difficulty saying words Short of breathe Eye movements Fatigue Writing incorrect letters Need To Do List to Function Noise Sensitivity Tinnitus Light Sensitivity Slurred speech Feeling faint Drunken Feeling Hypersomnia Jaw Pain Numb/tingling Limbs/Face Excessive Sweating Lack of Stamina Dry Skin Dry Eyes Temperature Swings Heat Intolerance Sore Throat Hot Flashes Visual Disturbances Exercise Intolerance Stiffness of joints Motion Sickness Nausea Bad Depth Perception Blood pooling Adrenaline Surges Abdominal Pain Vomiting Diarrhea Constriction in neck vessels Rashes Chills Hives Cystic Acne Sore skin

(Sorry, I know that format is awful but I copied and pasted from an Excel spreadsheet I use for the doc and the format didn't translate very well.) I am probably missing a few symptoms on there but that's mosts of them.

I have some particular foods that will set me off and the doc thinks those are regular food sensitivities but are probably made worse by this condition. For example, if I eat cilantro/corriander, I get an instant migraine and then follow with nausea, joint pain, chest compression, tachy, drunk feeling. The migraine starts while the food is still in my mouth. (Bananas, avocados, grapes, caraway seed, sometimes bell peppers)

Keep in mind that the elevation in the C4a, while it has implications of its own, is really an indication of an underlying problem, either chronic Lyme or a inflammatory connective tissue disease (see the link I added to prior post for good info on this.) I am in a somewhat constant state of what feels like MCAS and POTS symptoms because the C4a is always elevated and causing mast cell degranulation. I also am in a constant state of inflammation from the C4a, so my skin feels bruised if you touch it and my joints hurt all the time...some days are better than others. Plus, the inflammation is systemic, so it is affecting everything. We think (although the science is sketchy at best) that this inflammation is probably what's causing the neuro type symptoms, too, including the autonomic dysfunction. I think this is true based on the fact that my first symptoms to resolve when I was on the high dose prednisone were my neuro/POTS symptoms. The musculo-skeletal symptoms took a little longer but that didn't surprise me as they take more of a beating. I don't necessarily have triggers as much as things that just make it worse such as exercise, heat, weather changes, humidity, not getting enough rest.

I am located in Baltimore. MD. The doctor that is working on this with me is an immunologist named, Dr. Michael Mardiney, Jr. (the Jr. is important because both if his sons practice with him and are also immunologists.) When people ask which one, you just say "the dad".

If you have more questions, just let me know.

Hope you are feeling a bit better.

Katie

[LindaJoy]

Hi, Katie,

Thank you so much for taking the time to share all of this. My doctor was just in and we told her about all this. She wanted to know if you had problems all your life or just got them, because she said most compliment problems are in-born, so you would have had problems your whole life. I think she's trying to say that can't be my problem because I haven't had these severe episodes my whole life, yet I have had allergy type things my whole life, since I was four.

Anyway, have you had this your whole life or just recently? I really don't care, but apparently my doctor does. Ugh.

She said she was going to see if I have had these tests done (my husband called CCF and no, I haven't had them, but she wouldn't listen to us), and if I haven't, they could run them, but in the meantime, I'm being sent home to have my pcp take care of this issue that they, in a big university teaching hospital couldn't, until they can get me into Vanderbilt, which is where they want to send me. They said it could take up to a year to get in, but in the meantime, my pcp can manage me and keep me going.

Can you tell I'm feeling very frustrated right now? My pcp is the one who sent me to this hospital because she didn't know what to do for me at home, now I'm being sent back to her to take care of what they couldn't here. In other words: DISMISSED, again.

We're trying to get a hold of the allergist who saw me in here the other day. He was a fellow, and he took a great deal of time with me, asked a lot of really good questions, and seemed to think outside the box. We want to see what he thinks of all this. My hospital docs are pretty much dismissing it.

Oh, one thing you said that got me. Sometimes you get a headache even as the food is in your mouth. YES! Been there, done that. I always blamed TMJ, but sometimes, it's with things that didn't require much, if any, chewing.

Do you ever get back in your neck, right behind your ears, like an extreme pressure and ache, right after eating? I did that with radishes yesterday. No more radishes.

Thanks again, Katie.

Linda

[anna]

Hello Linda I have no idea if you have ever been on the inspire site but one lady has listed a very in depth post on her issues http://www.inspire.com/groups/ehlers-danlos-national-foundation/journal/mast-cells-and-related-conditions/ not sure if it will be of any use just a thought.

Take care

Anna

[issie]

Anna,

I like this post on mast cells and how they work and what to look for. Really put very simply. Thanks for posting the link. It really makes me wonder more - if this isn't an issue for more people than we realize. At the very least possibly the histamine intolerance problem. (See other thread.)

Issie

[Katybug]

LindaJoy,

Sorry the hosp docs are being so very unhelpful. I've been through over 30 docs in the last 4 1/2 yrs to find the ones I have now that are actually trying to be helpful. (I really hate when they "dismiss" me, so, the little vengeful part of me makes sure I "dismiss" them on my way out of their office. I told the cardio prior to the one I have now that "I appreciated him helping me chase my tail some more during the three minutes he spent in the room with me. I know its not very lady-like but their behavior isn't very doctor-like so I consider it a moral draw.)

As for the theory that complement activity can only be present from birth, that is not true. This paper explains the various origins of abnormal complement activity and only one of the possibilities is inborn dysfunction. http://www.questdiagnostics.com/hcp/intguide/Immuno/Complement_Glovsky.pdf

I have had severe allergies since early childhood and I have had a handful of instances throughout childhood/adolescence that make us think I had a predisposition to this (like my immune system was probably on its way downhill) but I did not have full blown problems until 4 1/2 yrs ago. For example, I had a virus when I was 14 that made me get a rash over my whole body and bumps all over my fingers. Those same finger bumps appear now (1-3 bumps) 1 or 2 times a yr. The immunologist and I both felt they might hold a clue to what my body is doing and sure enough the pathology report came back saying the bumps show clear evidence of an inflammatory connective tissue disorder although it wasn't developed enough to ID which disease. The pathologist actually called to make sure I was being evaluated by someone for things like lupus and scleroderma, as they are the usual suspects. So, I've been getting those bumps for 24 yrs. but I had none of the other symptoms that I currently experience.

I know for sure what my immunologist would say about this because he has said it to me before, "What difference does it make what we end up calling it if we can treat the symptoms effectively and get you off the disabled list?" I actually agree with him in that I don't care what we call it. Unfortunately, what concerns me is that most of his collegues are not so open minded. But he also beleives that we spend way too much money on diagnostics and not nearly enough on treatment. He's old school and visionary at the same time.

I do get that feeling in my neck behind my ears as part of my migraine symdrome. There are muscular triggers points back there that both my neuro and my chiropractor say will help trigger a migraine if they spasm or knot up. I can often be found with an ice pack on the back of my neck from ear to ear.

I, of course, have no idea if you have any issues with your complement system or not, but, it is a possibility for why you are having MCAS type symptoms. Hopefully, the docs will run the tests if for no other reason than to rule it out (seeing as how they don't seem to have any unique ideas.) It wouldn't be a complete answer but it is at least a major clue and would give some direction to diagnosis and treatment.

I really hope you do ok at home. Maybe your PCP can refer you to an immunologist that they work with. My new way to find decent docs is to say "If this was you, which immunologist would you go see?" Or, "If your wife/husband had these symptoms..."

Katie

[LindaJoy]

Hi, Anna, thank you for the site. yes, I've known Josie for years. She and I know each other from the mast cell site and Addison's site. She's a plethera of information. And, all she says about mast cells sounds so much like what I do, yet docs, two of the top mast cell docs in the world, say it's not mast cell. I talked with the allergist here at the hospital today, and he thinks the compliments that Katie mentioned may be worth looking into. I think so, too, so I'm glad to find a doctor who will support the testing.

Thanks, again, all.

Linda

[issie]

Linda,

I'm glad they are going to pursue that for you. It would be horrible to have to go elsewhere and wonder about it. I hope that is it and they can do something to help you.

Katie,

I really appreciated learning about the complement things - I didn't know about that - so, new knowledge to me.

Issie

[Katybug]

LindaJoy,

That's awesome! Just having a doctor's support and willingess to look beyond the obvious is healing.

issie,

Glad to help. It is truly amazing the amount we learn on this forum. I was teasing my pre-med student friend the other day that I would be able to get my medical license before her at this rate!

Cheers,

Katie

[issie]

Isn't that the truth. Too bad we can't get credit for all our research and the knowledge we get (on so many different body functions and processes). If there was an apprenticeship for medical knowledge by research - we'd be doctors by now.

Issie