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jmmb
@jmmb

Posts: 165
Joined: Aug 23, 2017

Anyone see a cardiac electrophysiologist? or cardiologist

Posted by @jmmb, Fri, Mar 16 2:35pm

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….

REPLY

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

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

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