They may be able to take out your gallstones nonsurgically by going down your stomach and into your gallbladder with a scope thing. I was almost sure that I had gallstones, but I didn't. The symptoms went away on their own with no diagnosis.

Thanks, Celeste! As long as I'm "asleep" when they do it!

Were you having these symtoms before or after being dx with MG?

Hi Jana,

with the passing out you could have ncs (neuro cardiogenic syncope - fainting due to a drop in blood pressure on standing). Or it could be NMS which is neurally mediated syncope which is low bp causing fainting. Dont quote me on this my brain is a bit fuzzy on this and you would need to check the dinet site.

I would do the TTT poor mans version as soon as you are able and if you dont already have one get a BP monitor.

Keep a diary of how you are feeling and note what your bp is at the time. Remembering your brain will feel a drop in bp before its measured with a bp monitor and it can be up to 20 mins before your bp monitor will show a change in pressure. You can also have a normal BP but have poor cerebral profusion ( poor blood flow to the brain) and it can cause brain fog. Hence why with dysautonomia you can feel dreadful but still have a normal bp!

The good news is Mestinon (I cant remember if you take it apologies) is used in people with low bp and syncope (fainting) to boost their bp when standing. Mayo clinic discovered this and quite a few people on Dinet use mestinon - small world huh?

I hope this helps Jana

Hugs
Rach

YES, Rach!! It does help!! Many thanks!!

Hi Jana,

I'm glad my rambling posts are helping!

Weak leg muscles can also be a symptom of POTS or dysautonomia, so add that to MG and thats a heap of trouble!

As I say google Pots place or Dinet and you will find a wealth of info. Most people dont just have Pots the have other autonomic nervous system issues too and its all covered including mast cell activation disorder. They are a really friendly bunch and will answer any questions you may have.

If you are on facebook there are loads of groups on there too. A great blog on the subject of dysautonomia is one called Living with Bob.

Any questions please give me a shout hun!

Hugs
Rach

Ok, so I did the poor man's tilt test yesterday. I had taken TWO Mestinon tablets a couple of hours before -- a total of 120 mg...............so, I'm thinking it is possible that my results aren't completely accurate (???).

Yesterday morning, I took my BP -- 110/60 and heartbeat was 59. I was actually in a little pain (gas), so I think this is why my BP was higher than normal (100/70 to 90/60). Here are th results of my test:

• While still laying down -- BP 130/88, HR 59
• As soon as I stood up -- BP 129/76, HR 62
• After 2 minutes -- BP 129/82, HR 60
• After 5 minutes -- BP 120/78, HR 62
• After 10 minutes -- BP 121/77, HR 61
• After 20 minutes -- BP 124/79, HR 61

I got SOOOOO tired of just standing -- and I was "weaving" all over the place to stay balanced -- I usually weave when trying to stand still, MG??? I dunno -- to me, it looks like my test results were ok. Of course the Mestinon seems to have raised my BP (????).

I looked up the NCS and NMS -- I have some of the symptoms of each, but not all.....maybe not a high enough percentage.

Confusion abounds in my poor head!

Again, THANKS Rach!

Mestinon does not raise my blood pressure. Also, I am pretty sure that it actually slows my heart rate down. If it raised my blood pressure, I couldn't use it because I have a terrible time keeping my blood pressure under control.

Jana, Your BP looks just fine. Not even a sign of over hydration or dehydration.

Green tea might cause more GI issues. So hold off until you've been thoroughly checked out! If it's alkaline, it might do more harm. Always try only one thing at a time or you won't know if it's helping or hurting.

Have you brought the "weaving" up to your neuro? Have you videotaped it? I think a neuro would be the one to run it by first, IMO.

With your migraine history . . . have you been looked at for any possible clotting disorders?

You have good doctors, so I'm sure they can help you figure this all out.


Annie

Thanks, Annie!

Sorry it has been so long since I responded. I got sick AGAIN on Saturday -- this time in the afternoon, NOT at night like my previous episodes.

Doc called to say all of my bloodwork was normal.....even the metabolic panel. Red blood cells were low -- but, have been this way for a couple of months.

Had the ultrasound -- NORMAL! No gall stones or pancreas problems.

My upper stomach is still hurting after I eat -- and all I have been eating is Jello, crackers, and a little bit of rice. (I lost about 3 more lbs in the past 6/7 days.) So, GP got me an appointment at a gastroenterology clinic, STAT. I saw a nurse practitioner.

Let me tell you, this visit was an answer to PRAYERS!! The NP had previously worked in a pulmonology clinic and knew ALL about MG!! I was stunned and sooooo very happy! I actually started crying. The NP said that with bulbar MG, gastroparesis is common. I will have a gastric emptying test in the next week or so! The NP also wants me to have an endoscopy and colonoscopy AT the SAME APPOINTMENT!! Said I would already be sedated -- so, I won't even know what is going on! YAY!!!! The NP is also gonna have an anesthetist WITH me during the scopes......just to watch me and my breathing and make sure MG doesn't tank.

I still don't feel well -- physically, but emotionally, I am greatly relieved. I feel like I will finally find out what is going on.....and hopefully get something to make me "better".

Many, many thanks to you all for urging me to seek medical advice and for giving me so much info about what might be going on!!!