[Annie59]

Hi Rach thanks for your post. I knew nothing of EDS and as I am behind here reading cause of eyes I still am. I was about to see a genetic specialist from Baylor that had started at the univeristy I go to but was so scared of another bad doc I backed out at the last minute. I had seen an older neuro on the POTS symptoms my internist said she felt I had cause I get so much better on IV fluids my daughter had pointed out. He speciized in autonomic dysf. What I didnt know was he specialized in labling people as mental and just takes stuff a person says in a nuts way. Like he asked what I drink and I first talked about the water I drink which special and does help. I said I was late to get a shipment and over the 1 1/2 days trying to drink other fluids only I got miserable again, so so dry and the POTS symptoms . Then I'd said I drink coke but am trying to cut back which my internist had incouraged some time back. He for reasons I have no idea on mentioned the coke remark and put some in quotes as if it was weird and said he felt I was not drinking enough and causing my symtoms!

That was the mild part!!!! It got worse as he went into MG stuff which is not why I was there. He said he could see that maybe the MG crisis was just the "dizzy" incident I had talked of. He denied I had autonomic dysfunction. Only thing he said I probably did have was low blood volume but wasnt gonna bother doing the test. I went to him to get the florinef. That was the beginning of the end at the univeristy.

Sorry to rant but this guy really blew any chance I had of getting a fair shake at the univeristy. The students I had at last appointment with that new neuro said to me they had read his report. I should have spoke up and said it was poppycock.

I am pretty sure I have POTS. I am peeing way too much and fluids dont stay in me. My internist had given me a paper on the symptoms and they all fit.

About your remark on switching family docs. Yes I just decided to do that too. Mine is a univeristy (where my other docs all were till recently) educated man. I draggged myself to him Friday and it was so painful in how he treated me I went into this awful place when I got home. With my stomach pain and med intolerance and intense dryness that is getting worse only some helped by IV fluids at this point he just wanted me to take nexium and not bother with the abdominal CT we had discussed previuosly. H told him the dry was so much. He checked my mouth and said I dont see it. I said I have been pushing water all day. And he said you r weight is the same and something else and them said "I think you just think you feel you are dry." If I hadnt been breathing so so badly from dragging myslef to him on a day I needed to rest I would have debated the issue like I had lost weight, 3 pounds since March 9th and with my Sjogrens if I dont start drinking first thing in the morn I can have stuff catch in my throat or just hurt it too from the dry. Been doing it for years.

I need to change this week or something as I doubt he will pursue the abdomimal issue in a responsible way.

I would be interested in how you are doing with the florinef. I would give anything to keep more fluids in me. This is nuts! I got my IV fluids yesterday and after 2 bags I still had dry mouth and I woke early this morn with my intensely dry nasal passages in so much pain I had to get up and drink, eat and get mestinon in me which is the only thing for now that gets my nose, eyes and mouth moist to some degree.

Annie59

[rach73]

Thanks for your post.

It really is a struggle I think to get any Dr to listen to you even if you have a diagnosis. I am going to tell you a true story but change some names!

I have a friend lets call her Suzie shes training to be a Dr and she got sick the same year as me, same symptoms as me facial weakness and ptosis. As she is a Uni she sees the campus doc who refers her to neuro ophthalmologist. He does an MRI and says she has a really rare type of brain tumor a facial nerve neuroma. It takes her two years to convince her normal neurologist of this diagnosis. Because the neurologist said she hadn't seen it in 27 years of practice - it couldn't be. Fast forward a few years Suzie has had part of her skull removed to allow tumor to grow so it doesn't interfere with her studies. She develops vertigo and is rushed to our local hospital.

The neurology team (same ones I have had to deal with) tell her she doesn't have a tumor it has been removed (it hasn't only part of her skull). She spends 4 days telling them she has a facial nerve neuroma and they don't believe her! She then rings her consultant in another part of the UK to deal with the consultants here.

When she asked the neurologist why he refused to believe her he told her "Patients lie". Sort of sums up the problem with neurologists doesn't it. If they haven't come across it, it doesn't exist!

The florinef could be causing me headaches or it could be my weak neck. So I am hanging on in there. On the florinef you have to salt load - I can't abide salt but I am trying very hard! I am still having to drink copious amounts of fluid. I get through 1.5-3 litres overnight, I have horrific night sweats which leave everything soaked, I get so dehydrated I drink loads.

During the day I struggle I drink probably about a litre of tea, thank god a new study has shown it does hydrate you! Then about a litre to 2 litres of squash during the day with salt added to it.

I have noticed my eyes are very puffy in the mornings now so I look like a frog! My wrinkled hands and fingers (look like I have been in the bath for a very long time) are also less wrinkled. My blood pressure was normal this evening for the first time in ages. Problem is I still feel crappy. I don't know how much longer I can stand this headache. Its just a low grumbly one but its annoying. I can now lean forward to put on socks and shoes without feeling dizzy! But still having problems sitting up and standing. My GP advised me that its not a miracle cure but any improvement at all was worth striving for.

A good web site is http://forums.dinet.org/ this is excellent for people with autonomic dysfunction particularly POTS. Without the help I have received from the people on that site I would have not pushed for the diagnosis or known anything about the disorder. Look up the post good article on pots its a new post and lists all the symptoms - some a lot of us on Dinet hadn't even realized were POTS.

Feel free to message me. I don't come on here as often as before but I do check at least once a week to see whats going on.

Good luck

Rach

[Annie59]

Wow!! Patients lie. That sure sums it up doesnt it. What cynics. I dont get the up side to assumimg people lie. Does it make it easier for them? I guess I could see this with my doc. He doesnt have to be concerned or dig or refer on if he assumes this. He has been wrong twice in that he was stunned when it turned out I had Sjogrens. He said who diagnosed it!! I said the internist I asked you to send me to at the university. He was further stunned that she was not a Rheumy and knew that. Then with getting the report on my MG from Dr S he is wrong about that too. So what would make him start to believe me? Major surgery? Dying?

I called the 2 doc names I had this morn. The best one I got a cold no when I said what my insurance was. I asked do you understand that medicaid is my secondary insurance and Medicare is first so you do get paid by both? She ahd already said no and she was standing by it. The next one had a nicer office person who got what I was saying about both. She said she had to ask. I wonder what they would have said if I just said Medicare. They didnt react till I said medicaid. With economic crisis and all in our country I get why they are doing this. but after seeing people on TV last nite in wheelchairs on Skid row in LA this is a true sad statement on ignoring people that need help and a loss of the doctor who truly cares or 'can' afford to care.

Annie59

Originally Posted by rach73

Thanks for your post.

It really is a struggle I think to get any dr to listen to you even if you have a diagnosis. I am going to tell you a true story but change some names!

I have a friend lets call her suzie shes training to be a dr and she got sick the same year as me, same symptoms as me facial weakness and ptosis. As she is a Uni she sees the campus doc who refers her to neuro opthalmologist. He does an MRI and says she has a really rare type of brain tumour a facial nerve neuroma. It takes her two years to convince her normal neurologist of this diagnosis. Because the neurologist said she hadn't seen it in 27 years of practice - it couldn't be. Fast forward a few years Suzie has had part of her skull removed to allow tumour to grow so it doesn't interfere with her studies. She develops vertigo and is rushed to our local hospital.

The neurology team (same ones I have had to deal with) tell her she doesn't have a tumour it has been removed (it hasn't only part of her skull). She spends 4 days telling them she has a facial nerve neuroma and they don't believe her! She then rings her consultant in another part of the UK to deal with the consultants here.

When she asked the neurologist why he refused to believe her he told her "Patients lie". Sort of sums up the problem with neurologists doesn't it. If they haven't come across it, it goesn't exist!

[rach73]

I was just checking in and saw your post.

I think some consultants / specialists won't believe another Dr's diagnosis unless their tests confirm it. I can understand them not taking things on face value but it seems to me that if it suits them they can take it on face value and chose to ignore the rest.

I am having a weird reaction to the florinef, my MG symptoms that had almost disappeared have come back. I am having daily ptosis ( I was anyway but this is getting very noticeable) so my eyes looked like they are half closed. Yesterday I felt like I couldn't breathe and ended up using oxygen and taking mestinon. I am paying the price today as my stomach is really complaining. The good news is that I responded to the mestinon and within an hour my breathing was back to normal.

My husband popped his head around the bedroom door and said "I can't remember the last time I saw your eyes that wide open!".

I am very tired today and my eyes are drooping as I type this. I will avoid the mestinon though as it wreaks havoc with my intestines. Unless I have trouble breathing again.

Sorry you are going through such a tough time

Rach

[Annie59]

Thankfully my pulmonogist has been able to make up his own mind tho after on the worst docs he did say maybe we better reasess. FOrtunately I said did you get my note to do a test with the mestinon for my breathing lab tests. He had and said lets do it. I had not taken any mestinon for at least that morn maybe more. He had done that testing as I have to have a retest every time I see him. It proved that I had an enormous boost even on just 30mg in my results. He has been for square on my side ever since.

Also the eye movement specialist who is also a surgeon did the same thing in that he read some of what I brought and was sent to him by my local office but made up his mind.

Annie59

Originally Posted by rach73

I was just checking in and saw your post.

I think some consultants / specialists won't believe another Dr's diagnosis unless their tests confirm it. I can understand them not taking things on face value but it seems to me that if it suits them they can take it on face value and chose to ignore the rest.

I am having a weird reaction to the florinef, my MG symptoms that had almost disappeared have come back. I am having daily ptosis ( I was anyway but this is getting very noticeable) so my eyes looked like they are half closed. Yesterday I felt like I couldn't breathe and ended up using oxygen and taking mestinon. I am paying the price today as my stomach is really complaining. The good news is that I responded to the mestinon and within an hour my breathing was back to normal.

My husband popped his head around the bedroom door and said "I can't remember the last time I saw your eyes that wide open!".

I am very tired today and my eyes are drooping as I type this. I will avoid the mestinon though as it wreaks havoc with my intestines. Unless I have trouble breathing again.

Sorry you are going through such a tough time

Rach