Median Arcuate Ligament Syndrome (MALS)

@kariulrich I know exactly what you mean!! You have to hold on to some sort of hope that there will be some part of your old life coming back. It seems like it was a whole different life. Thank you so much for your kind words. Talking with you gives me hope. I did talk with my primary dr. and she is ordering the pharmacology testing. That will be interesting. They do most of my meds. She also agrees that I should see a cardiologist, so she sent in the referral to mayo. I'll see what happens there. Yesterday I was in the ER all day. I have back issues but I was up all night with such pain, I couldn't lay down, sit or stand. My back hip and legs hurt so bad , almost like a piano fell on my lower back and smashed it. I don't even know how to explain it. My fingers were and still are tingly. I went to a Banner hospital er 10 min from my house. They wanted to make sure I didn't have the flu so they did chest xray, nasal swab and some labs. I am like ok but what about my legs hip and back.....They gave me pain meds and sent me home. Pain meds worked, but why did that happen I wonder. To me with all that is going on, that is kind of scary. Maybe cardiologist will know, or I have a follow up with my vascular surgeon on the 31st. It is just so frustrating, like we all know, I feel like no one really listens to what I am saying, or they don't talk to each other at Mayo. That was my biggest disappointment. I need to address that again when I am at my next appointment. I love my surgeon, it is my GI dr I am not pleased with, but hoping if they communicated that would help. I will see what happens once cardiologist gets involved. I am just really getting tired of it all.
After my surgeon visit I am thinking of switching out my Cymbalta with the savella, same class and used for fatigue and fibromyalgia. maybe that will help. How are you doing with the increase in the Cymbalta? I think I have been on it just to long. 20 years probably for me I think.
Well thank you so much again. I hope you see how much you have helped and continue to help me in this "journey" and the many others I read here as well....

@jmmb Thank you always for your words of encouragement, they mean so much to me. If you can keep up your certification.... you never know. Even if you never use it again, it can give you a source of hope. That is why I have kept up my nursing license. I thought if I gave it I would give up hope of feeling better. I don’t know if that makes sense to you? I did not know that supplements were not available in several states, that is so disappointing. It is no surprise to me you are a special ed teacher, you are a nurturing and caring individual. ❤️

@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!

Hi @kariulrich , I'm glad to hear back from you!! You have been so helpful to me and I am sure many others with great information. I was worried maybe you had a procedure or something done or just feeling lousy. I know I have times that get really bad, I am lucky to get out of bed. My holidays were quiet, my kids and us, but really nice. How were yours?
Well thanks for the info again. I am going to my primary next week so I wanted to let her know about the pharmacological testing. I look forward to reading and exploring those links as well.
Sorry that the Cymbalta isn't helping with the pain, but I know with me they started a low dose and then increased so hopefully that will help you.
Congratulations on your BSN! That is great. I really miss working (being with the kids, I was a teacher for special ed). I wonder if I will ever be able to go back to it. I did renew my certification last year to try and stay positive. As far as the SSD, you should try again. They always turn you down the first time. I was lucky, my long term disability with my employer had this group called the Advocator. They helped with everything. All the papers, any questions and right before my hearing they got me a lawyer. I was turned down twice and at the hearing they approved me right then and there. I then got medicare, but it isn't as good as I thought. For some crazy reason the state of Arizona and I think maybe 2 or 3 other states, don't let you get a supplement plan if you are on social security disability. Kind of the stupidest thing. Your sick, you can't work obviously and you need medical attention......how are you suppose to pay for it. Crazy. Anyway I digress....I don't know your exact situation and all but I would encourage you to apply again. If you need any help and I can help you in anyway, please let me know.
Always great to hear from you. Good luck with the meds and thanks again for the info!!!

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

@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!

@jmmb I did not realize I missed this post! I am so sorry, I apologize. My primary at Mayo Clinic is Dr. Sundsted: https://www.mayoclinic.org/biographies/sundsted-karna-k-m-d/bio-20202046 I really like her, she is easy to talk to and is very helpful at explaining things. She also listen to my thoughts, which is very important to me. I think we have made a great team. I am going to up my Cymbalta soon, we are doing changes in my meds gradually. I really like the med so far, it has been helpful for my mood... not so much for the pain, but increasing it should help. I am in school, but don't let that fool you... ha ha ... I am taking one class at a time and taking extended breaks between classes. I am finally getting my BSN at age 50! I did apply for SSD several years ago, it was a very long process but was denied despite my physicians recommendations. I do have a difficult time managing my energy levels, I take it day by day. My classes are all online which is helpful, many times I am doing classwork on the computer in bed. Mayo Clinic Rochester has a program to help manage energy levels... I am not that familiar with it, but it is a goal of mine to go through the program. I hope your 2018 is going well!! Sending hugs, and again I apologize for taking so long to reply.

Hi Kari, I'm doing a little bit better. ( That means the pain and bloating are less severe and I can sleep at night.) I've been taking Lyrica 50 mg. capsules, 3 X's a day along with 2 caps of Tylenol, 500mg each, 3 X's a day. Lyrica is for diabetic nerve pain and it has made a difference in how I'm feeling. I'm sorry to hear your meds are not working. New Mexico has legalized medical cannabis and I'm in the process of getting approval from the state authorization office. I'll keep you posted on this. As far as pharmacology testing goes, I'm not sure what you mean. I have however gotten blood tests to check my mineral and vitamin levels given all the drugs I take and being cautious about depleting my system. This I've gotten with my doctor's referrals to Tricore Testing. I would like to recommend the Cleveland Clinic in Ohio. Their Vascular Institute has been very involved in treating MALS patients for quite some time now. I plan to go up there in March to see Dr Rodriquez. There are no doctors or surgeons here in NM who know how to treat MALS patients. I need a treatment plan. I need to know what else can be done. Thank you Kari for your kindness and caring in keeping up with our community.
Lou D'Amico

@jmmb! Hello!! Good to hear from you. How were your holidays? How are you feeling? I am sorry to hear about your meds. I am doing good. I have not been on much, my current class is wrapping up now... so I will be on Mayo Connect a lot more in upcoming weeks. Thank you for thinking of me. The pharmacology testing can be done through Mayo Clinic, it also can be done by asking your doctor to do it through this website: https://oneome.com (The website has a lot of helpful information. This is the same company that Mayo used for my testing. I also I believe they are affiliate in some way to Mayo) The pharmacological testing can tell you how you metabolize many medication, but not all. The information you get from the testing helps doctors determine what meds are best for you. If you have been on a particular medicine for an extended period of time your body can build up a tolerance to them and they are not as effective. What has helped me in the past when this has happened is to take a medication holiday, so I would stop under the guidance of my physician and resume them after several months. This is something you should talk to your doctor about, you may need a different class of medication during the "med holiday". Also some meds cannot be stopped abruptly. This is Mayo Clinic's link on testing: http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp It is difficult when meds stop working effectively!!

@kariulrich I haven't seen any posts from you, I hope you are doing ok. I wanted to ask you how I go about getting the pharmacology testing done. I know you told me who could help and I went through all the posts and I thought I saved it, but I can't find it. I am wondering if some of my meds just aren't working anymore since I've been taking them for so long. Well I really hope you are doing well, got some rest and had a nice holiday.