Anyone see a cardiac electrophysiologist? or cardiologist

Posted by jmmb @jmmb, Mar 16, 2018

Hi everyone.I am new to this group. I have Median Arcuate Ligament Syndrome, MALS, and Chronic Fatigue. I am also going to get an evaluation for POTS. I finally got a call from Mayo and I am going to see a cardiac electrophysiologist on April 3. Now I need help from all of you experienced wise ones. What should I ask? What tests should I expect/ask for? Things like that. It is for an evaluation for POTS, however if there is anything else he may find, or if you think from my symptoms I should ask. I will list the main ones. Sorry if this is long, but I feel like I only get one shot with this appointment and don't want to miss anything. Here goes:
Typical MALS symptoms: worse pain after eating, bloating, nausea, chest pain, constipation, gi issues....
I also have, some of which are MALS symptoms also:
-difficulty breathing; hard to get deep breath in
-tightening in chest
-tingling in fingers and toes, sometimes legs feel numb like, just recently heels feel like pins in them
-very bad hip pain/butt pain maybe area
-leg pain, hard to stand
-lower backpain, (do have degenerative disc disease) but also upper across top of back
-neck pain, stiffness
-LIGHT HEADEDNESS OFTEN moving makes it worse
-ringing in ears
-no endurance/no strength
muscle weakness
-arms feel like they go numb if held up to long (like washing hair) hurts to fold clothes...
-cant lay on my left side, left arm goes numb
-FATIGUE!!!!!!!! no amount of sleep changes the fatigue I also am diagnosed with CFS but much worse since 1st surgery
-coughing at night
-dry mouth, itchy eyes.
-constant thirst
-inside body temperature can get really hot and overwhelming, not a hot flash, hard to explain
-night sweats (not hormonal) so bad sometimes need to change clothes they are soaked
-malabsorbtion issues
-twice weird large round circle under my eye down to my cheek, puffy under eye
-gas
-constipation, if any bowel movement -small round balls
-pain in chest
-pain at sternum
-hurts any pressure on stomach, hurts to wear a bra
okay so you get the idea. My biggest issues are the fatigue and lightheadedness. Of course the stomach issues. I have been living with the stomach issues so long I do have a high pain tolerance. The fatigue and lightheadedness, along with leg pain are getting worse. So is the chest pain.
Again so sorry this is long, but would appreciate any feed back or help/guidance /advice....

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John, Volunteer Mentor | @johnbishop | Mar 16, 2018

Hi @jmmb, You really have a lot on your plate. I'm sure it's not very easy for you. I wouldn't even know where to start as far as what tests to get. I figure that expertise is with the doctor or specialists. I see that you have a Mayo appointment on April 3rd. I am sure that they will know what to do as far as tests. I think the big thing that you can do to help yourself is come prepared. And boy do you have a list to take with you. I would compile a list of symptoms like you have done in your post here and take it with you to the appointment. Communication with the doctor/specialist is important and the more you can tell them, the more it helps them put together a diagnosis and treatment plan (IMHO).

Hoping some members who have experience will jump in the discussion and offer suggestions.

@jmmb, if you can, will you update us after your appointment?

John

jmmb | @jmmb | Mar 16, 2018

Thank you John. I will update you after the appointment. Hopefully I will get some answers!!
Jill

bibabiba | @bibabiba | Jan 12 5:32pm

Hello I just read your post from 2018 and hope you have found some answers for your symptoms above.

When reading all your symptoms I honestly can’t believe how many of the same symptoms we have.

I also have Mals and have had surgery for it but unfortunately my symptoms have not improved . I have the most excruciating chronic pain , fatigue and dizziness that I can not explain as no amount of sleep can fix it and only someone that has suffered this can relate.

Below are my symptoms

* Constipation and very bad gut issues which I’ve had for over 30 years
*Terrible pain after bowel movements, my whole system is affected by the pain after bowel movements. Bowel movements are my biggest pain causer the pain is so debilitating
*Mals ( Have had Mals surgery but my celiac artery collapsed 3 weeks after surgery and is now compressed by 75% , was compressed 90% before Mals surgery.
*difficulty breathing, hard to get deep breath in
* find it hard to breath as I get tightening in chest especially as I walk and if roads are uphill I just can’t do it, my chest hurts so much
* Hip pain especially when I stand from sitting on right hip
* recurrent UTIs
*leg pain, hard to stand
*Upper right sided back pain and lower back-pain especially upon waking up
*light headedness , especially upon standing
*Low blood pressure
*salt craving
* Constantly feeling fatigued and overwhelmingly tired, no amount of sleep can fix it
*spinal pain in middle of back
*no endurance/no strength
muscle weakness
*Can’t hold arms up too long like trying to hang washing on the line.
*cant lay on my left side, as my right side is bending around side hip and it is so painful
*Very itchy eyes that are always watery and very light sensitive
*constantly thirsty and dehydrated
* Itchy dry skin
* can’t cope with heat, I get a terrible Malar looking rash on my face it stings and burns like crazy. My body in general heats up like crazy
*My gut can’t tolerate most foods
* excessive gas and burping . I can’t seem to release air
* Colonoscopy biopsy of duodenum have found my mast cells are very high
* I have an air filled diverticulum in duodenum
* very poor memory
* terrible nerve pain
* Very puffy under eyes With dark indents under eyes to the point several people have said you have something black under your eye
*arms go very numb
*shooting pain down right arm and right leg as my pain builds
* Constant need to urinate