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Median Arcuate Ligament Syndrome (MALS)
Digestive Health | Last Active: 3 hours ago | Replies (1158)Comment receiving replies
Hi everyone. 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: pain after eating, bloating, nausea, chest pain....
I also have, and I know some of these are also Mals related:
-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....
Replies to "Hi everyone. I finally got a call from Mayo and I am going to see a..."
Thanks Kari, it is a list for sure....embarrassing but unfortunately real like you say. There are so many symptoms that are overlapping of other things. we will see what happens at the cardiac electrophysiologist...... I am going to pm you if that is ok... oh and I saw Robin's article on Mals Pals...it was awesome!!! Thanks,Jill
@jmmb, I just read in your post that you will be traveling to Mayo Clinic. I want to let you know that we have a discussion group "Visiting Mayo Clinic" where you can meet other members who have also traveled there. If this is your first trip to Mayo, I think you will find some information that can be helpful to you. You are always welcome to visit and to join any conversation there.
https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/
I wish you a safe journey.
Rosemary
@jmmb, I am out of my experience in this discussion, but I want to assure you, from my experience, that at Mayo Clinic, there is no such thing as too much background information, and no such thing as a dumb question.
Rosemary
Thanks Jill this is very validating and lengthy is okay. I had sent a very similar list to my PCP last week, to address any thoughts that weight loss is the only real problem to address in MALS. And no bras for me, either especially when eating 🙂
Thank you @rosemarya . I have been going to Mayo for quite awhile now. I go to the AZ clinic.
@jmmb, I hope it is okay if I tag you when I see a question about the AZ Mayo Clinic location. Rosemary
Sometimes my replies this past week were blocked by the website, anyone else have this problem? I'd like to reach out to learn more about programs at Mayo in Arizona for MALS. It looks like some of you have experience with them, can you let me know who to phone there to find out more?
Thank you for your symptom list. I have many that are on your list. It is a wonder why more doctors don't consider MALS during your first visit.
Has anyone had a Dr explain why patients were fine no symptoms for many years and then all of sudden have MALS symptoms?
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@jmmb, this is an awesome list! Print this out.... because it has symptoms from multiple body systems it will be a lot to go through, but not impossible. Each area needs to be addressed. I had to giggle about not being able to wear a bra..... I remember telling my vascular surgeon that too... it causes to much pressure and it quite painful. Every symptom you have listed here I have had and they are real! This is a great list check things off as they address them.