enko

Potsgirl,

mitral valve prolapse. Don't worry, I have that moments too

At least one voice was heard

Thank you kcmom *hugs* I hope that your son is doing well/better?

Godsgal,

that's an interesting thing you've said about showering in hot water! Before I enjoyed showers in hot water (not steaming ofc ), but now I simply can't stand it, although I do tend to go towards warmer water when I can (I don't stand being cold either, I'd rather be hot than cold). That would also probably explain why do I sometimes feel nausea after a shower..? It's probably related to low BP too..

And about washing hands in hot water - I've noticed that too! Before that would be normal water temperature for me, but now my hands feel like they are on fire, start shaking and turn red! Do you have that symptoms too? Also skin on them feels dry so after each time I wash my hands I have to use some cream to help it.

If I have to be on the sun for just a short period of time I get a feeling that I will burst in flames from the inside and have to run for cover. It's enough to be in a warmer area and I'll develop at least some symptoms including headache, nausea and exhaustion (I'll sleep for a big part of the day) or slip into presyncope (I didn't fully faint yet).

That info about heat is really interesting - I didn't know that by now!

I have MVP with mild TR, cardio didn't prescribe any therapy..

Godsgal thank you for your reply! It was very helpful

Also one more thing if I can ask (forgotten about it before): after taking a shower my knees (and above them) turn red or reddish.. weird.. and itchy sometimes. I've tried changing the soap few times, didn't help. Anybody else?

P.S. I just wonder how did I manage to squeeze in extra "s" in mastocytosis.. and not just once!

Hi all! I have few questions, sorry for bugging..

Unfortunately I'll have to wait for two and a half more months to see my dermatovenerologist. She saw me only once, made a scratch test, said that I have urticaria (factitia) and sent me home with antihistamine pills (I'm not from US, but the ones I'm taking are Zyrtec like, based on cetirizinum). Also said that I have foliculitis on my back.. I've been reading about mastocystosis and I think that there's a great chance I have it (headaches, tachy, itching, low bp, nausea, vertigo, presyncope..)

a) I still don't understand where's the difference with masto and MCAD? Can someone help with that?

b ) I take one pill (10 mg) in the morning, it does help with itching (although it still itches), but things get worse in the evening. Anyone with masto/MCAD having that kind of problems?

c) Also, do you have feeling like that your throat is swollen? Even small pressure on my neck gives me a feeling of choking and I start coughing.. I also feel that lymph nodes on my neck are swollen, but my GP said "They are just sized like that" Maybe I have "Hypochondriac" written on my forehead?

d) If I've got it correctly, mast cell disorders are related to immune system?

Thank you in advance!

Sorry cause I can't help you in any other way but just wishing you good luck! Just be calm and yourself

I'm happy for you Naomi I do hope that he'll be able to figure out a helpful next step

lgail,

yes, I have that too And I can't sleep if I'm hungry so I have to get up and eat something Although, I don't get any weight no matter how much late I eat..

I'm interested into that too..

I have the same problem - I'm or not feeling hungry and force myself to eat, or I'm hungry and can't eat after few bites..

Go Naomi!

You've just described it pretty vividly

Songcanary you're gorgeous!

She still didn't reply anything.. I hate waiting..

Cross your fingers for me ppl - since GP sent me to psychiatrist (because "Neuros cannot prescribe SSRIs!"), I've sent an email to one that was recommended to me and asked her to take a look at my records. I just hope that she won't tell me that I'm insane.. But if she does, in the end I'll get that SSRIs after all, just in much stronger dosage..

Well, I didn't have syncope yet, "just" presyncope because I manage to sit (preferably on a cold spot) before I lose it totally.

In worst cases, here is what I feel:

- weird sensation on back of my neck and back of the head (like tingles)

- nausea

- general weakness

- like that my legs will cut off and I will fall down any moment

- starting to lose or totally losing vision

- breathing shallowly

- can't speak or keep my head up

- I'm totally slowed down

I hope that I didn't forget anything...

"Grinch Syndrome". That sounds just... bad.

Edit: I've just noticed that I've written "thank" instead of "that" I hate that

Did you try to talk about that with your doctor? I also have low BP, I was recommended using more salt and drinking at least 2 liters of water per day (soup, juices, tea and other stuff doesn't count). Coffee and black tea can also help (no more than two cups of tea, and not after 5 PM).

I'm turning stones too right now

Thanks for the movie title, I didn't know about that one..

Since Sarah4 wrote about the movies on the youtube, I've looked them up. Here's the starting link (can't post them all):

OMG, oh WOW! Good that I've seen those videos! I have demographism, urticaria and folliculitis, and my allergist doesn't know what to think about that yet.. Now I can refer her to something!

I sound like a broken record with my health complaints, even I am tired of it. I just feel like the Drs must be missing something, I really do. There has to be more to this.

Me too And you know that look when you're telling them something and how bad you feel about it, and they have "THAT" look..?

I do also have feelings of tingles and numbness all around my body, but mostly on my back and hands.. It goes away in a day or two.. Mentioned it to my neuro but didn't get any feedback..

I'm sorry 'cause you're feeling like that I just wish that one day there will be someone who will understand us and know how to help

718mom,

I know how do you feel - like that you're always back to square one! I have MRI scheduled for 3 months, and I can bet that everything will be "normal" and I don't feel like that.. I've been reading up a bit, it seems that most of people with dysautonomia have normal MRI results.. weird, isn't it?

I'm glad you're starting to get better!