Dizzy Dame

Oh linda I had no idea you were in such a bad way...I really hope you begin to feel better soon!

You'll be in my thoughts and prayers dear! I'll try to find your adress so I can send you a get well card

(((((HUGS)))))

-Lauren

Glad to hear the test came back negative

I'm sorry you've been feeling so tired lately...hopefully it's just a passing thing and isn't a sign of something new!

You'll be in my thoughts

Hugs,

lauren

I used to take muscle relaxers for my chronic pain too. They kind of helped with the pain, but they also made me reeeeeeally loopy I used to have really wierd dreams if I went to sleep while on them too...

I hope they help your pain! It's no fun to be in pain all the time Let us know how you do!

Hugs,

Lauren

Hi there,

I'm so sorry to hear all that you've been going through It sounds like things are very quickly spiraling out of control, and I'm sure it's terrifying to have so many things go wrong with your body at once.

I hate to ask, but have you looked into ALS? The difficulty speaking and swallowing tipped me off. I know that there are some treatments for ALS so if you do have it, it's best to find out right away. Have you been to a good neurologist? A good cardiologist?

You might also want to look into some of the more agressive autonomic neuropathies...although the BP rising is an abnormal symptom for many autonomic neuropathies...PAF and MSA I think both have trademark HYPOtension rather than HYPERtension.

I wish I had more answers for you...but hopefully someone on the forum might have better ideas.

-Lauren

Hi Sara,

I'm currently going down the MG path as well, but we've begun to suspect that I really have lyme disease as opposed to MG. I too have trouble swallowing and occasional trouble chewing. What region do you live in? If you're on the East coast I can recommend an excellent neuromuscular Dr. Feel free to PM me if you want.

-Lauren

Many with POTS are considered high risk. I've not had any children but if I'm ever healthy enough to concieve, I would also be considered high-risk. I know there are many mothers on this forum, some of which have had children while sick with POTS, so hopefully someone will be able to better answer your questions.

My answer: "You're fired".

I don't put up with **** from any doctor. I've been too sick for too long to listen to any of their BS. I've also learned that being assertive can make a difference. I let doctors know right off the bat that I'm an educated, intelligent, and motivated patient. Normally they respect that, but when they don't they're gone.

Hey Amy,

I'm so sorry to hear about your bad night and day

You probably know this but Lyme can cause electrical problems in the heart that show up on the EKG. Also I have a "right bundle branch block" that shows up on my EKG every time and my heart's in great shape. From my understanding, often times that particular kind of change on the EKG (which often shows up as an elongated T-wave) is idiopathic and doesn't mean anything dangerous.

I'm glad you're going to the cardiologist! Hopefully it'll be nothing more than a harmless electrical problem In the meantime, you'll be in my thoughts.

Please let us know what happens!

Hugs,

Lauren

I'm so glad to hear your fever's breaking Melissa! Hopefully you'll be able to get an at-home nurse for your next IVIG infusion...and hopefully you'll start to see some benefits soon

Hi Lauren,

I'm a Lauren too I have horrible acid reflux but also have to eat a high salt diet...I just keep up the salt and eat antacids. As far as I know there aren't any really salty foods that are easy on the stomach. If it gets really bad, talk to you doc.

Hope that helps,

Lauren

I don't know any good doctors, but I wanted to bump this topic back up to give it another chance

Thanks for updating us Jan. As always both you and Jeff will be in my prayers!

Hugs,

Lauren

How beautiful Persephone! I can't imagine how inspiring it must be go to to school there...so much history!

We're all so proud of you for sticking with it, even though it was so difficult at times, let's all hope those bad times are in the past

Hugs,

Lauren

That's such excellent news Amy! Keep us posted as you continue your treatment

Hugs,

Lauren

Melissa,

For some reason I didn't see that you'd updated this post until today. I'm so sorry that things have gotten even worse for you I'll continue to pray for you and hopefully your fever will go down soon!

Please let us know if there's anything we can do, and if you want to PM me your address, I'd be happy to send you a get well card

Hugs,

Lauren

Hi Sara,

It depends on how often and how low your blood pressure gets...for example, my BP drops dangerously low every time I stand, so if I were to call the doctor every time my pressure was "too low", I'd always be on the phone.

Like Cardiactec said, I'd worry less about the numbers and more about how you feel. If 100/70 makes you feel sick, than that's too low, if you feel fine at 80/40, then that's not too low for you.

Is your BP constantly dropping? If so you may want to talk to your doctor about medication to treat that. I'm on midodrine and mestinon and they've really helped to keep my BP stable.

-Lauren

Hi Sara,

If you have raynauds, and the drug is contraindicated for people with raynauds, then perhaps you should talk to your doctor about switching.

I'm not on beta-blockers but I do have raynauds and I was warned that exaccerbations in the condition can lead to gangrene, so it's not something to ignore. If your feet are turning white/blue for long periods of time, that's not good.

Hopefully you can switch medications and everything will work out! Let us know how it goes

Lauren

I don't know about herniated disks, but if the pain is as severe as you're describing you should probably get to the ER or to your doctor quickly. Sudden, severe pain counts as an emergency.

Hope everything's okay!

-Lauren

I dont' know of any hotels, but I wanted to congratulate you on getting an appointment. Hopefully they'll be able to get to the bottom of all your crazy symptoms

Hugs,

Lauren

Malosp,

Yes, the doctor meant that POTS is not a disease in itself, but rather a finding. Which, if that had been part of a supportive converstaion, would have been refreshing for me to hear. However, given the context of his attitude and the other things he said, it didn't feel so nice.

I tend to get mixed treatment from specialists. The doctors at Vanderbilt, for example, were caring and compassionate and really listened to me. I've felt like I'm in good hands at Hopkins, but my doctor there is a bit less compassionate...in fact, his bedside manner is almost non-existent.

I've had mixed reactions from "small-time" docs as well, in fact, some of the worst reactions I've gotten are from small-practice clinicians.

The best treatment I ever got from a doctor was my endocrinologist in Hawaii. He used to call me on the weekends to see how I was doing! How's that for caring? He treated me more like a granddaughter than a patient...there aren't many doctors like that anymore.

I've made another appointment with a new LLMD so hopefully this one will be a good fit. The person who recommended her spoke very highly of her, so hopefully things will work out

I'm the same as BEE, my cardiologist handles everything. He's treated POTS before, but admits that my case is "super specialized"...whatever that means.

I had to search nearly a year to find a GP that I was comfortable with. If you're not satisfied with your doctor now, just keep switching until you find someone you like. It take a bit of extra effort and money, but in the end you'll benefit so much from having someone who like and trust treating you

Best of luck!

Thanks guys

Nina,

I'm currently trying to schedule another appointment with another LLMD, because I wouldn't trust that doctor to treat poision ivy, let alone lyme, which from what I've read is very difficult and complicated to treat. Hopefully I can find an understanding doc who actually listens.

Hi Guys,

I went to an LLMD yesterday hoping to begin a work-up for lyme disease. I got to his office at 10:30 for an 11am appointment, filled out the paperwork, and then was left in the waiting room for 1 1/2 hours.

Finally they called me back (by then I was dizzy from sitting in my wheelchair for so long), and the doctor came in after another 45 minutes. He was like a rooster, just waltzed in and sat down and put his feet up on MY wheelchair! (I was laying on the exam table). This was how the dialogue went:

"So you think you have lyme?" he said

"I'm not sure, I've been diagnosed with POTS and possible MG"

"Well, let me tell you, POTS is not a diagnosis, and you can't 'possibly' have MG...did they do a tensilon test?"

"Well--no, but--"

"They didn't do a tensilon test? Who are these quack doctors--tell me when this started"

"Well, I used to ride horses--"

"Oh HORSES?" (He rolls his eyes) "Do you have any joint pain?"

"Yes"

"You have lyme" He looks over at his assistant, "Right down that she has lyme on her chart." He looks back at me, "Why haven't you been seen by any competent doctors?"

"I've been to Vanderbilt and Hopkins and had pretty good workups---"

"Well THEY don't know diddly about lyme. Listen, I'm going to start you on antibiotics tomorrow. That's a promise. You just call my nurse for the prescription."

Then he walked out of the room! I think the entire appointment took less than 5 minutes.

How could anyone be so egotistical!?!?!? He didn't even evaulate me, or let me ask any questions! I've never felt so ignored, even at the ER at least they listened...even if they chose not to understand what I was saying.

I looked up this doctor after I got home and he's written several books and has a radio show...I can't believe that someone that negligent would be allowed to be in print.

At least I didn't let him medicate me. I want to get a real lyme work up before I start taking any new pills, thank you very much.

Thanks for letting me vent...the whole ordeal was really more funny than anything. Although I probably won't be laughing when I get his bill...he doesn't take health insurance.

Yes. I was told that flying could be dangerous the last time I flew. I went and got IV fluids before getting on the plane, and had a seat in first class so I could keep my feet up.

I did alright for the first three hours (it was a 12 hour flight), but when we hit really bad turbulence, the bouncing made my POTS flare for some reason and I started to throw up almost uncontrollably, then I developed severe chest pain and difficulty breathing.

I was put on oxygen and they paged for a doctor on the plane, and forutnately there was one. I was kept on 02 and monitored, but we almost had to divert the flight. It was absolute **** and I thought more than once that I was dying.

However, I did survive the flight and after about 2 weeks in bed, I began to feel a bit better.

Is there any way you could fly with 02 and an IV? I think if I'd had those two things from the beginning I would have been much better.

I can relate to what you're going through right now...I was living in Hawaii and had to fly to find doctors as well, so it's kind of a catch-22. If you do fly to the US can you stay there for awhile? I'd be worried that flying there and back over too short a period of time would be really bad for your health.

Good luck! And I'm sorry if this reply wasn't reassuring, but hopefully you won't have the same problems I did. I was very, very sick when I flew and really had no business in the air. Hopefully you're in a better spot than I was.