My story-underinformed

[underinformed35]

Hello everyone! I will try to make this as short as I can. I am a 35f and about five weeks ago I woke up in the middle of the night feeling really hot, so I got up to check the thermostat. I did not even make it, everything went black and I felt like I was going to throw-up and pass out at the same time. I ended up on the floor covered in sweat but cold at the same time. I couldn't get up for about fifteen minutes, then I just felt really weak and clammy. It was so awful. I have never quite felt like that before. Anyway, the next day I felt awful and have felt awful since. My heart rate is way up and way down, left arm and shoulder numbness, chest pressure, lightheaded, vision problems, blood pressure up and down, headache everyday, sometimes horrible sometimes dull and extreme fatigue. It just seems like everything went haywire and I have been having these symptoms on and off every since. I have always suffered from migraines with aura and I have had the aura like I was getting a migraine but never got the migraine, then about a week ago I started seeing spots or floaters I guess there called. I have had every test related to my heart possible. I even had a cardiac catheter last week. All they see is the irregular beat and rhythm but can not find what is causing it. I have been to the doctor so much in the last few weeks, usually two or three times a week. First they thought I had a blood clot that went to my lungs. They did CT scan which was normal, still thought I was clotting somewhere so ran all the tests for that and the only thing that came back not normal was my d-dimer. It was high. They said that could mean a lot of things. Then they did all the tests on my heart and still don't have a clue. I go back tomorrow again. Thinking about it now though I have had some hand shaking for a long while( a few years) and just figured it was nerves. Like I said in my previous post I only thought about MS because I do have a half brother that had it and when I read someone talk about their heart, I just wondered if they could be related. What do you all think? Maybe I am just grasping because I want an answer so bad! Any advice would be great. Thank you!

[underinformed35]

samsgam-I just wonder if the heart arrythmia is a sign also of MS. Do you know if anyone else had that also. You are also having trouble with your eyes and so am I. It went from aura to blurry vision to now I have constant all the time spots that never go away. Maybe I should make an eye appointment even though my cardiologist thinks that is heart related, what do you think?

[underinformed35]

Snowflake-It is not you that made me cry, just the whole situation. This has helped me just knowing that other people are going through similar things. Thank you for all of your support!
Like Sonoya, I have tried to muster all the positive energy and just feel drained. Good luck to everyone going through tests soon. Hopefully they will give you the answers we all are seeking!

[Snowflake99]

Hi under-informed,

I didn't mean to make you cry! just to let you know that you're not alone. See all the doctors you can and get all and any tests done. Don't ignore your symptoms - the days when I try to do that I end up face first on the carpet... Never a good place to be!

Your kids and husband love you and they're not tired of you being sick, they just wish you didn't have to go through all you are (for your sake) Trust me on this, just stay strong and keep battling.

sorry can't type anymore today - am shattered.

Hugs and moral support
S

[underinformed35]

Well I just got out of the doctor's office and I cried all the way home. I can't seem to quit. I don't think that I have ever been so frustrated and just plain sad in my whole life. I again heard the same thing." There is something wrong with you but I don't know what it is" Now my cardiologist is referring me to an EP specialist. He feels that everything that is going on is because of my heart even the vision problems so he doesn't fee like I need an MRI. Now a new doctor and more tests...

[Sonaya]

Hi,

You are in the right place here.  If you ever need to vent or just ask a questions the ladies here are all wonderful and very supportive.  Many of us are in a similar situation to you.  And the emotional rollercoaster that goes with it.  

I can appreciate your comment about loved ones getting sick of you being sick, when you dont know whats wrong but YOU know something is WRONG.  It is only normal to worry about how you are feeling because it affects your life so much.  You are not crazy for being concerned about your own health.  

We dont just wake up one day and decide thats it I am going to have all these weird symptoms.  Its happened and somehow we find strength to get through the days, and the tests to find something that will explain it all.

Next week I probably will have a bad week as I am anticipating that my EEG will show up nothing like every other test has shown up nothing.  Ive tried all the positive vibe energy I can muster, Ive been so flat out and busy that I have not had time to worry or obsess about my symptoms, and they are still there is some varying forms or degrees so I KNOW its not in my head and yet we still doubt ourselves because we dont have a diagnosis.

Please know you are truly not alone in all this, and I do hope you find some answers soon.
Take care
Sonaya

[underinformed35]

Thank you so much for your replies. It is so nice to know that other people are going through similar things. I am going to the doctor tomorrow so we will see again what tests next.
Snowflake- I read this and your reply on your thread and I just sat here and cried. You are right about it being hard when this sickness is just becoming part of my day. It makes me feel guilty that I am not there enough right now for my kids and husband. I feel like they are getting sick of me being constantly sick. I do know that something is wrong but when you don't get answers it makes you feel like it's all in your head. Some days I wake up and think, Ok today it is mind over sickness I will ignore it! Then by mid day I am exhausted and even more discouraged. It just doesn't work that way as much as I would like for it to be that way.
Thank you all so much for just listening.
underinformed

[kitten o]

WELCOME TO THE BEST PLACE ON EARTH.
LOT'S OF PEOPLE HERE WHO ARE VERY CARING.
I HOPE YOU FEEL BETTER. AND WELCOME AGAIN.
KITT

[samsgam]

Hi,
I am still undiagnosed with ms, trying since sept for different tests that include your symptoms plus complete and total bladder emptying (without my consent) on two occasions, severe arm and pains my primary doesnt feel the cardiac type symptoms are related, but then he still hasnt diagnosed any of it!! I was also told that it was just a benign arrythmia, but it didn't feel benign! after 5 mos i finally have appt with neuro, and hopefully ins. co. will ok mri this time!
Good luck to u,
samsgam

[Snowflake99]

Hi again Underinformed,

I just posted to you on another thread and forgot to mention high heart rate and low blood pressure at the same time was an odd symptom I had that apparently goes with Addison's.

I'm sorry you're having such a rough time. You're not going crazy though. I have felt like that many times, but at the end of the day, you do know when there is something wrong with your body. It's hard when horrible symptoms become so much a  part of your daily life that you begin to regard them as normal. This is the point when we start to doubt ourselves, but just remember, you're the one who knows, because you're the one who's going through it. You're also the only one who can benchmark the severity/impact accurately, because you know what you were like before you got sick. Sometimes it helps to let your doctor know of your  frustration a little at your next appointment just so he gets a clear picture of what an impact this is all having on your daily life.  It's not being rude or being a difficult patient.

Even if your doctor cannot explain what caused the clot he feels you may have, you should ask him if a clot would explain all the symptoms you are having, and if not what would. (I'm learning to be blunt in my questioning. He may not be able to answer, but at least you've asked, and you'll feel a bit more in control) If he really thinks a clot is at the root of the problem, you could ask him how he intends to treat it. Was your cardiac  catheterisation to check for hypo-tension? I had one of those. I still shudder....

Hang on in there with the testing. I know it's tough. the advice a close friend of mine gave me when I was having trouble with diagnoses and negative test results, was that for every test that came back negative, we'd see that as a good thing and find some way to celebrate a little, and when one came back positive, we'd deal with it then.

Keep your chin up,

Snowflake.

[underinformed35]

Thank you so much for the support. I am starting to feel a little crazy, like it's all in my head or something.
My d-dimer was 2.4 and normal they said is under 1.5 so it was not extremely high. They did do the CT scan with IV, but the doctor was wanting it to show 4th or 5th dimensions or something and they didn't do that. I really didn't understand, but he said that he did not want me to have to repeat it. He said that if it was a clot my body was dissolving it on it's own, but he can not explain what would have caused it and all the trouble I am still having or even if that is part of what is going on. I have been seeing a cardiologist the whole time and now he wants me to go to Electro Cardiologist for the rate and rhythm problems for more tests. I am just tired of tests with no answers. I feel like they are just not getting to the root of the problems and only trying to fix the main symptoms without addressing what is causing it all.
Thanks again

[Snowflake99]

Hi Under-informed!

Sorry you're having such a rough time. People on this forum are wonderful and very knowledgeable so I'm sure somebody will answer you very soon. Unfortunately, I'm not one of the knowledgeable ones. I do know what it's like to feel afraid and under-informed though, and my heart goes out to you for what you're going through. I have had clots in my lungs, and it's not pleasant. When you go back tomorrow maybe you should ask why your d-dimers is so high, and what they are going to do about it. There are other diagnostic imaging procedures for looking for clots in the lung that you can request. V-Q scans and pulmonary angiograms are supposed to be the best. Was your CT scan high resolution?

Good luck and feel better soon.

Snowflake.