Hating This!

[Clairefmartin]

Well its back to the drawing board. My catecholemines, both laying and standing (only for about a minute or two before I passed out) were totally normal, and kind of low. My epi was slightly high while laying, and dropped upon standing??? And my C1 emelayse was high/normal at 39, my IgE was almost exactly as elevated as it was a few months ago at 140. My WBCs are always slightly high, 12-20 range, I always feel sick/flu-ish with sore throat, and my passing out pre-syncope is worse than ever (I last about a minute before I start losing feeling/tingling in my arms and legs and get ligtheaded). My liver numbers are trending up. I have no idea what is going on.

I thought for sure I was hyper POTS because of my massive surges, but I have not had anxiety/surge or POTS issues my whole life, just Raynauds and some hypoglycemia as a teen.

We know there is massive pooling in my right leg, which is the leg that was affected most by my spinal surgery back in '99, which is when symtoms slowly started apprearing. Since then, it started with GI issues, then POTS/OI, then Gluten, then more severe hypogycemia and neurapathy symptoms, now the results of 15 months of inactivty (9 of which in hospital knocked up, PEs, DVTs, POTS, the works) - now being completely non functional and useless.

Every time I feel like there may be an answer coming, labs come back normal. All I know is I feel better with IV fluids, Klonopin helps control the surges, and I'm miserable. I had to go to the ER on Monday for fluids and the pain in my abdomen, which I think is GB/liver related based on my tests, and all I can do is wait and wait and wait (indoors while it gets nice outside and I live right by the beach) for someone to figure this out.

Oh and I can't digest raw veggies. I have been trying to eat healthier, I had stopped eating raw veg while pregnant because I had issues, and I guess I still am. Even cucumbers sat in my stomach and made me miserable for half the night - it was like I didn't digest them and they just hung out and decided to be jerks in my stomach.

Just had to vent. I guess I'm going to look into autimmune stuff, since every woman in my family (moms side) has something autoimmune. I even tried to see a LLMD, and the only one in the area is not taking patinets and is backed up for years. I'm normally very upbeat and laugh a lot, but as the weather gets nicer (its 85 here today) and I feel worse and worse, its getting depressing. What I would give to take my kids to the beach! Or anywhere! Or just to leave the house.

Thanks for listening. Input or ideas welcome, I'm stumped.

Claire

[issie]

(((((HUGS)))))) to you. It's so hard, when we think we have it figured out and get a let down. I was so sure Lorsartan was going to be my wonder drug and it wasn't. I'm thinking about trying to get docs to look into the autoimmune issues to - but, not really knowing how to go about it or what to ask for. What do you think you are going to have them check for?

Not sure what meds you're on but could they be affecting your liver. I personally have issues with my liver too and I use Milk Thistle almost daily to try to support it. I also drink at least one fresh lemon a day in water - that helps to detox the liver. I'm doing okay so far with those things. Whether they are making a huge difference - we'll find out when I get my yearly MRI to see if the lesion has improved. It hasn't in two years - so not sure what's going on. It is rather scarry. I also have dysfunction with it at the P450 level and that affects my ability to take meds - because my liver doesn't detox me properly with meds and they re-circulate.

Hang in there - there's always a different angle to look at this thing.

Issie

[POTLUCK]

Hi,

I can relate to how you are feeling. I just posted "Labs:Angiotensin 2,Aldosterone, Renin" with the same idea, labs do not come back to support the type of POTS you think you have. I can feel my adranaline surge when I get the labs. My WBC's are by the way, always the opposite of yours, just slightly below normal range, my Mom's are too. Of course the doctors just say, " Oh, looks like that is just where you live." It's where I live.

My Free catecholamines are pending but they were drawn on B-blocker so may not mean much anyway.

Definately finding it hard to relax since getting these labs back. Stressors are just like standing they just have much more impact than they should now.

What happens to your BP from lying to standing?

Anyways, sorry to hear of your disappointment. I do not know you well, like I am sure many of the others do on here, but since I could relate to how you felt thought you might not mind my commenting.

[Clairefmartin]

Thank you both! Issie - thank you for the liver tips, after I see the GI I'm going to start a regiment of suppliments. I have been holding off for someone to get a baseline and see where I am defciient, no one has checked yet.

Potluck (great name BTW), I did see your post - and thanks for your feedback. My BP initially goes up when I stand, then crashes. Sometimes we only catch it when it crashes, the last time they managed to actually get a reading it had dropped 40 systolic and I was on my way out (of consiousness).

I know I have pooling, have been told my blood is "concentrated", need to get the test for hypovolemia. Its just lots of testing, waiting, repeat rinse, repeat. I need to start living! My vandy appointment is not until late July. I have been waiting since Nov.

I will stop complainig now. Here is a link to a funny video I made to cheer myself up based on my recent ER visit and others stories:

[issie]

You are soooo creative. Can't believe that really happened - but, it did.

[hholmes13]

Hahaha that made me laugh so hard! I've had a rough few weeks and I needed that. I'm sorry that is based on real experiences, and unfortunately I can relate a little bit too...however your cartoon was great!

[MomtoGiuliana]

I'm so sorry you are still looking for answers and feeling so poorly. I hope you can get outdoors in the spring air even if just outside your door.

Your video is hilarious. My husband loved it too

[POTLUCK]

That was hysterical. Thank you

[puppylove]

That is so funny!!!! XD And true.

[ramakentesh]

Have heart. Progress is being made. Have you tried mestinon? Works ok for me. Calms things down but does not always stop the over stim faintness which in eight years has only been helped by beer. Lol. Well that Ana chinese herbal mix that included rehmannia and eucommia.

An autoimmune basis is suspected by some docs just not necessarily nicotinic receptors. Other targets are possible. They have been looking for antibodies against net in the past and now dr David Kem and his team are looking at other antibodies.

[Clairefmartin]

Thanks all, glad you enjoyed it - I may post it in the Chit Chat forum

And Rama- Mestinon is on my list, but I've heard the muscle spasms are wacky. I'm going to Dr Chemali from Cleveland Clinic (he just moved here!) next week - who knows what testing and following timing will be, but maybe he'll have new thoughts. I called my Neuroendo that has been doing the autonomic testing in tears yesterday because my lungs hurt so bad, and I just feel sick after talking for 10 minutes on the phone and have to sleep. Not sure what to do, the last month my lungs have been killing me and I cant tolerate a 30 minute visit from someone, or extended talking, i completely crash.

I keep babbling, sorry. Its just been tough. I'm weaning my baby from nursing so I can have more med options. My parents move here the beginning of May, and we move away from this hospital apartment we are in (I listen to ambulances all night and have a view from the balcony of the parking garage and giant hospital sign), so that will be good for me mentally - I'll have my back yard back! I will crawl out there and roll in the dirt if I have too, miss my garden.

Anyways, thanks for the support and suggestions, as always!

Claire

[MomtoGiuliana]

I do wonder if weaning will make a big difference for you--as I mentioned it was a turning point for me.

I hope you get relief from these severe symptoms soon...

[bellgirl]

So sorry, Claire; we all understand...wish you felt better. This warm weather is making it hard for me to breathe, as well...my blood is so thick, sometimes I wonder how I get any to my brain at all...lol. I used to wonder why it was so thick...at least I know the answer to that, and why I have trouble breathing and am exhausted all the time...Loved your video...especially because I am a retired RN. Definitely open your windows!! It is beautiful outside here in Alabama. I wish I was closer to the beach!! Love the sea air...My mom lives in Panama City, but that is 7 hours away!! I'm almost in Tennessee

[HopeSprings]

Oh my God, Claire, did you create that video?? That was awesome!! So funny. Thank you!! :D

[ramakentesh]

ive had no muscle issues or stomach issues at all from it.

[Clairefmartin]

So sorry, Claire; we all understand...wish you felt better. This warm weather is making it hard for me to breathe, as well...my blood is so thick, sometimes I wonder how I get any to my brain at all...lol. I used to wonder why it was so thick...at least I know the answer to that, and why I have trouble breathing and am exhausted all the time...Loved your video...especially because I am a retired RN. Definitely open your windows!! It is beautiful outside here in Alabama. I wish I was closer to the beach!! Love the sea air...My mom lives in Panama City, but that is 7 hours away!! I'm almost in Tennessee

Thanks for the encouragement What did you find out about your bloo dbeing thick if you don't mind me asking? I have always wondered!

And Rama, thank you. We all react so differently. I can push through and deal with most things, but I have massive medicine anxiety, I have reacted so badly in the past to so many meds! Do you know what the half life is - or how long till it wears off if I react funny?

MomtoGuiliano - thank you, and I agree. I'm taking Klonopin, so the pediatrician wanted me to wean slowly just in case she is getting any via my milk. My plan is to be weaned by next month. She is already not sleeping as well, hope I havent been sedating her with my milk! But we bring this up every time at the ped and they feel its no issue, as she has WAY surpassed all the milestones for her age (thank you God).

Naomi - yes, I did make it, and thanks I'd like to make more, it was really fun putting together. I llike to do silly POTS stuff!

[MomtoGiuliana]

So glad your daughter is doing so well. It makes it that much easier too to focus on your needs.

[bellgirl]

Claire...I believe our blood is thicker due to having only 80-85% less blood than the average person, because of chronic dehydration. This is what my ANS doc told me when I was first diagnosed, anyway! Now I'm wondering if my high cholesterol was caused by my blood being more concentrated...hum Always coming up with new questions. I'm going to my doctors in Birmingham....does anyone have any other questions for the doctors. (Neuro or ANS doctors) I'm always full of them. Love to learn, and want to understand all of this better!!

[Relax86]

Hilarious cartoon. Perfect timing. I found it because I was searching symptoms since I've re-flared. This flare is not like the others but maybe I was meant to just see the cartoon and stop reading for a little while.

[Joann]

I had seen your cartoon before and loved it. I loved it even more, since I have had to deal with more doctors that are like that. The technicians and nurses are often the ones that encourage to keep trying.

I am so sorry you are dealing with all of your symptoms. I don't have the same symptoms as you but have the same problem, I keep getting test after test and no answers. On paper almost everything is perfect. I am the most optimal healthy level for inflammation, automimmune, etc... Yet I cannot function. I did have some months where I was getting better, went for tests close to two months ago and am almost back to square one .

What is really odd, is that most of my problems are currently in my sternum and back in that same area. I cannot make almost any movement but walking? It is kind of the opposite of pots really. Although I also have pots symptoms. But I cannot carry anything (not even my purse), I cannot lean over to put my shoes on, or go up stairs and the areas are extreme pain and then all pots symptoms with high bp occur and yet no one can figure it out. To me it would seem something in that area is causing it, but trying to get doctors to look at basic things is taking forever as I get worse and worse.

Sorry, I hope your appointment goes well and this is the doctor that helps you. and that you get to go outside and spend some time with your kids. Your first post you mentioned feeling useless. I feel like that also, just try to keep fighting, because your loved ones know you are doing all you can to get better.

[looneymom]

I know and understand the frustration. Have you had the panel for AAG ran yet? That is the next test for my son. Are you on any medications that could be causing problems? We are in the process of weaning my son off another medication (florinif) to see it it's causing his symptoms to be worse. Autoimmune conditions are going to be checked after AAG. I wish I had answers for you and everybody else that is suffering. You keep hoping that something will show up on a test and give you a clue to the underlying cause of your health condition.

Do you use a wheelchair to help with mobility? I know that you miss being able to get around and do things with your kids. It would allow you some more freedom, like going to the zoo or taking them to the mall. However, I also realize if you do not feel good, in pain or just too tired, its hard to get out and do something with anyone. Hope your next doctors appointment goes well and don't be shy about asking for test. I bring research studies about test to my son's doctors appointments.