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Median Arcuate Ligament Syndrome (MALS)
Digestive Health | Last Active: Jan 7 4:53am | Replies (1231)Comment receiving replies
@ruudolpho Cleveland Clinic has an amazing vascular clinic, I have had the opportunity to follow a patient through their appointments many years ago and I have to say they did a tremendous job in caring for this patient. I am happy to hear the Lyrica has given you some relief, and the ability to sleep at night. I do think not sleeping contributes to the pain. Have you noticed any side effects from the Lyrica? May I ask if you have lost any additional weight? I just posted several links on a response to @jmmb about pharmacogenetic testing, I will post them here also. I am sure Cleveland Clinic has this type of testing, for me it was helpful to know how my body metabolizes meds and which meds are better suited for me. It is so time intensive and not much fun going through different meds to see which ones work. This is the company that did my testing at Mayo, you do not need to have it done through Mayo, but you do need a doctor to order it: https://oneome.com also this explains what testing can help with: http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp It is rather complicated and I found it helpful to go through the individualized medicine department. I am very interested to hear what you think about medical cannabis! I have never had vitamin and minerals checked, that is very smart thing for all MALS patients! I appreciate you sharing that, I would think as our bodies are so malnourished this would be helpful in getting out health and well-being back on track. It is good to hear from you Lou!
Replies to "@ruudolpho Cleveland Clinic has an amazing vascular clinic, I have had the opportunity to follow a..."
@ruudolpho what is so funny about MALS for me, I do have bouts of nausea at times, but what is difficult is that I get so hungry!!! The food adversion is the only way to completely stop the pain. For me taking Tramadol has worked to prevent and limit the pain to some degree. The malnutrition is not easy to bounce back from... hopefully as your nutrition improves so will the weakness and exhaustion. I do believe it takes a full year to reach recovery, and maybe longer to get back your strength. You are in my thoughts. Always good to hear from you Lou!
I have a question about the Tramadol. I think when I was in er yesterday, they gave me Tramadol but it was muscle relaxer type pain reliever. Is that correct? I could have heard the name wrong. It sounded familiar to me and when I just read this I thought it could be this????
Do you think they gave you Toradol? That is an anti-inflammatory given for pain.
Hi Kari, yes I think they did, then they gave me oxycodone. I feel better, but still achy all over. I am getting more chest pain again, and light headedness and tingling in fingers and toes. I posted another post that I am going to my surgeon WED and was hoping he can push up my cardiologist appt. Also wanted advice on how to ask why aren't the drs. collaborating??? I thought that was the point of Mayo. Love my vascular surgeon, so I am researching and making a list of questions for him. I am afraid though they just don't have answers. Hope you are doing better!
They should be collaborating with one another, make sure you let them know you expect that. Sometimes they do talk to one another before and after appointments through a different messaging system than the portal. Always let them know that it is important to you that they touch base with your team of doctors. I ask at the end of my appointment for them to update my team if I feel that it is important that my entire team knows. Many times my specialist will look at notes prior to me following up.
Right now Kari I only have the Vascular surgeon and the GI fellow. Last appointment the vascular surgeon said he would try and talk to the attending dr. in the GI dept. He also said he was not to fond of the dept. (kind of on the side). I had sent messages through the portal to ask what happened and never heard back. Last week I sent him a message and he called me the next day, so I am not sure what happened with the other messages, but I will definitely bring that up Wed. Once I get a cardiologist involved I for sure expect them to collaborate. I will discuss this with the surgeon. Do you have a primary dr. at Mayo that oversees it all? My primary is wonderful, but she is not with Mayo so it is hard for her. Thanks
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I have not noticed any side effects from the Lyrica. I have in fact gained weight. At 6 foot one, I'm now at 120 pounds. I was down to 108 pounds in July after my surgery. My appetite has pushed me to eat more, but I still struggle with weakness and exhaustion. I will keep you posted. Lou