My Poor Man's Tilt Table Test Results!

[Sea]

That's good you have that copy, it can be useful. It sounds like you need a doctor who understands POTS.

Not saying this applies in your case, but hypermobility is in joints (ligaments and tendons) not muscle. It is actually quite common for a person with joint hypermobility to have stiffness, especially as they age. Joint hypermobility can lead to stiffness in two ways. Firstly damage to joints extended beyond their proper range which over time leads to stiffness in the joints and secondly, muscles which are shortened because instead of a muscle stretching as it's used ligaments and tendons stretch instead which makes a joint unstable.

 

[MeSci]

or could it be stiff person syndrome?

 

[Karganeth]

@Sea

The doctor who received my results is the one that referred me but also the one that was insistent it was all 'anxiety' and nothing more. Will be interesting to see his reaction again. Well considering that this is now the second diagnosis I've received that he has dismissed/ignored before. When will doctors ever learn? There was one doctor that I met once who knew about POTS but because I didn't faint I couldn't have POTS (her words). Then that begs the question "what is causing my blood to pool?" I've never had surgery before or any sort of trauma/injury in my life. I assume Dr Ingle believes that the likeliest cause could be stretchy veins which can be caused by hypermobility? Hmm where do I go from here? Have any of you found the cause of blood pooling? Before all these issues happened I was an avid runner for 5 years everyday. So it's just so odd that my blood pooling in my legs/arms of all places would turn out to be the problem haha! I've tried googling "causes of blood pooling in the legs" but I seem to only get "Chronic Venous Insufficiency" which sounds confusing and is probably not in relation to what I have. The joint instability that results in stretched short muscles could be a possibility in my case but still I have no hypermobility. I've tried the Beighton scale at home and I know I'd score 0. I was even asked in my first appointment if I noticed myself being 'flexible' and/or 'stretchy' skin to which I replied "no". So why are they still barking up that tree? Although I did mention that I was extremely stiff all the time. could this be the extreme opposite of hypermobility?

@MeSci

If we were going just by the name, that would be the best medical condition to explain how I feel. Unfortunately I've read into it and have noted that having regular "falls" seem to be play a huge part in that condition which I've never had. Although I am sensitive to environmental stimuli like sound and lights. There can't be no harm in mentioning it to the doctors.

 

[Sea]

Sadly many doctors are still very ignorant about POTS, even the ones who have heard about it. I haven't had any success in trying to stay with and educate a doctor about a disorder they don't know enough about. It sounds like you need to find a doctor who is familiar with POTS and willing to investigate further to get you some answers.

 

[Karganeth]

Sadly many doctors are still very ignorant about POTS, even the ones who have heard about it. I haven't had any success in trying to stay with and educate a doctor about a disorder they don't know enough about. It sounds like you need to find a doctor who is familiar with POTS and willing to investigate further to get you some answers.

Agreed and I just got diagnosed so it's gonna be another long fight on our hands! All my relatives were very happy when I got diagnosed and I asked what for? "So that you can get better now" they said, but I'm pretty much doing all the things that are recommended as it is. Before I could see the doctor I was taken in by the nurse to check my vital signs sitting and standing. Sitting was 120/89 BPM 129 and Standing was 160/90 (Didn't see heart rate) The doctor sounded so excited giving me the diagnosis of POTS, going into how clear cut of a case it is and all. I wasn't told anything about the breathing/ice water etc tests. So I can only assume they came out normal?

The doctor was nice enough to send me for something called "POTS Management" which is supposed to be where other POTS sufferers gather to converse and learn new helpful ways to deal with the condition with the help of specialist nurses trained in that field. The doc asked me if I felt I was hypermobile to which I replied with an astounding 'NO' due to the overwhelming chronic stiffness I experience. Anyways she asked me to do the palms on the floor thing and thumb to touch my forearm both of which I could not do. She proceeded no further in the examination possibilty of Hypermobility which I can understand.

Having read how it's important to find the underlying cause I was surprised to find that no additional testing will be done. From my understanding I have been given a Primary form of POTS. Not that I'm bothered but was sort of shocked as I expected further testing to be done from what I've read primarly about POTS that it quite often has an underlying cause? Anywho I'm happy that I finally am being taken seriously and will hopefully be getting a referral to a Neuro-gastro specialist and also a Neuro-opthalmology specialist.

...and that's about it for now.

 

[Sea]

Many doctors see POTS as the end diagnosis. If treatment for POTS restores good function then that may be a good enough answer for some.

However POTS can have numerous underlying causes and sometimes being able to find the cause guides treatment in different directions. Some causes that come to mind can be infection, autoimmune, neuropathic, vascular...

Primary POTS is diagnosed when a cause can't be found, but that would only be after extensive testing. I don't think the testing you've had so far would be enough to rule out an underlying cause. Keep that in mind if you don't get good answers and treatment that helps.