13 hours ago, misseb said:

Yep. Im dairy, gluten, sugar , fruit, fermented products free, and follow a low histamine diet. And not eating in the evening is a game changer too for me.

I was diagnosed with chronic spontaneous urticaria (autoimmune) and progesterone allergy and have been for well over a year on 20 mg loritidine BD (off label)  this helps with skin and gastric issues quite well.   I think for me it would be hard to keep to such a diet, especially as most of the food on the low histamine diet are my favorites. 😀

Strangely I feel better not eating anything all day, helps with brain-fog and afternoon flagging.   In the past I could manage a couple of days fasting, not so much now though.   Food at times can cause me to feel really exhausted especially during the day.  

If you suspect food allergies then you may have better luck with an immunologist.    Just be aware that MAST cell activation is not yet a recognizable disorder in many medical establishments, most will state that there is no diagnostic criteria under WHO.   I am very careful what I say to specialists, it is easy for some to find an excuse for what is happening to you. 

It is clear that this GI specialist is working within their own silo rather that being multi-disciplinary.   Take a support person with you and ask to record (cell phone) the appointment so that you can listen to educational aspects of the appointment at a later date (mention vaguely brain fog stuff)  this stuff will hopefully prevent such horrible experiences in the future.

I used to have GI emptying issues many years ago, I still get this problem for short period of times.  I asked to be referred to gastro for motility issues, only to end up having an endoscopy with a diagnosis of gastritis and esophagitis - run of the mill stuff.  With treatment some of my GI issues settled.   If you wake tasting food maybe that you have reflux and need some thing  like Omeprazole to help reduce stomach acid and protect your stomach lining.  

It may be a good idea to take photos of the swelling you get post meals to show on your next doctors appointment. 

You state in another post that you drink 4 litres of water, that is quite excessive. increasing your risk of hyponatremia.  (To much water intake decreases your sodium levels which tends to cause a fluid shift).

Best of luck

Interesting because the neurologist looked into Lambert–Eaton myasthenic syndrome, because I had lose of strength in my neck and shoulders.  All came back NAD.  Never returned back to him as he gave me whiplash when checking out my neck ROM.  Took me months to recover from that experience.  

No harm in reducing your home environment EMF levels.

When my muscles are tight and sore I tend to book an appointment to get a sports massage.  I also have an dose of magnesium before going to bed.  Hope you are feeling better soon. 😃

A number of years ago I was diagnosed with endolymphatic hydrops, this condition for me is accompanied by tinnitus and sensorineural hearing loss (SNL). (ENT convinced autoimmune SNL but could not find evidence)  So yep will need hearing aids soon, I am in my mid-40's and my hearing has been waxing and waning for the last 12 years.  From time to time I do get vertigo also.  Not severe vertigo like those who develop Ménière's disease, like my Mum who on her first attack the vertigo was so severe that she could not stand up due to the spinning room and severe vomiting.   She now takes stemital and this seems to curb the severity of the symptoms.   

My night time balance is not good.  I used to be able to get up the stairs in one piece in the semi-dark.  I now loose my balance if I try this nowadays.  If I am moving around, turning to the left and right I can feel dizzy (not dysautomia related) and become a little unstable on my feet.  Closing my eyes for a moment helps. 

I do get ocular migraines, where I get an aura only but no headache - lol kinda out there with the aura shapes.

Sounds like benign paroxysmal positional vertigo or a labaryntitis to me.

Perhaps the urge to move your bowels is setting off dysautonomia symptoms rather the the other way round. The symptoms may be present just before the urge or rapid intestinal transit of bowel motion occur. 

A few thoughts, could her heavy legs be related to a side effect from her medication fludrocortisone as this can cause muscle weakness and also decrease potassium levels.  Has your daughter been reviewed by a neurologist to rule out myopathy (muscle disease)  

I was initially under a neurologist for diagnostic testing for  Myasthenia gravis (bloods and EMG).

@Meemee You could try and help decrease brain fog by avoiding sugar and sugar-containing products, particularly sodas and sweets, but also white bread, pasta, and white rice, which are the most common culprits related to brain fog. These ultra-processed foods are metabolized very quickly and cause blood sugar to spike then drop, which naturally makes you tired and results in brain fog.

My response when people ask how do I cope with high heart rates and low BP, is that my body has acclimatized to these levels.  A couple of years ago I went to new  doctor for so meds , he was more worried about my BP being low (70/40) and kept asking if I felt dizzy or light headed or other ailment. I which I said no, but assured him that at 65/30 I tend to have symptoms. 

I left his offices with him gobsmacked, I really don't think he had seen a patient stand and walk away normally with a low BP.

2 hours ago, potsiebarbie said:

I totally agree! A better explanation could have left my mind at ease. What kind of chest pain do you get with that? 

When I get SVT the chest pain I get is a crushing, heaviness mid sternum. I also get short of breath and light headed. 

13 hours ago, potsiebarbie said:

I followed up with my new cardiologist whom I've only see once before since my new EKG abnormality. He said the echo and 24 hr holter were "fine". He gave no details and I asked about my newly acquired EKG abnormality and he said he could barely read it on the EKG and it's not a big deal and to follow up in a year. The EKG abnormality is a incomplete right bundle branch block, by the way. And as far as I can tell it seems to come and go, or not get picked up. I guess I'm just having a hard time accepting it. I left the appt thinking to myself "no, I don't want it. No thanks. I do not accept" lol I'm like a kid who doesnt want to eat their veggies. IDK. Any advice, or experience to share? Anyone else go that long in between cardio visits? Anyone else with abnormal ekgs? 

There are a couple of positives, the echo-cardiogram indicates that the  structure of your heart normal and your holter was normal.   Incomplete RBBB in a ECG is often a normal variant or a slight delay in conduction.  It is okay to feel they way you feel, it is a shame that your cardiologist couldn't explain more about the anomaly in your ECG - it would take away a lot of worry and concern.

I too have a normal echo (phew),  My own ECG shows a narrow QRS complex.   I also have IST.  I am prone to SVT's - HR have been up to 250 BPM - chest pain extra-ordinary BUT not dangerous. 😀 I have I I have also had whilst an inpatient  twice showing p wave pauses,  though the symptoms of this is the same as with the dysautonomia. 🤨

Is there support services that run along side oncology to discuss your concerns?   Even though the scan will be costly and has been recommended that it seems that it is the best option right now so that you can get the treatment you need to get well.   Hang in there!

I would speak to your doctor about this intermittent, temporary paralysis and if not already see a neurologist.  If you develop this paralysis again before seeing your doctor then I would recommend to seek treatment at your hospital.   This may speed up a diagnosis.

I have had a form of paralysis and numbness of my face that has been fleeting - only lasting a couple of minutes.    I do get twitching in the check muscle prior to paralysis I don't have any other neurological symptoms with this.

I will use a combination of sources, water, Powerade Zero Isotonic drinks, salty soups/broths and salt sticks.  

Salt-sticks: