MALS, FMD and possibly POTS

Posted by jayhawk57 @jayhawk57, Sep 27, 2020

Hello! I was diagnosed with FMD in renal artery which has left me with one kidney 19 years ago and carotid artery 2 years ago. In 2013 had surgery for MALS. I have been recently in hospital again and doctors think I have POTS. I’m having issues with fluid retention, irregular HR at times, hard time getting my breath and malnutrition because I can’t eat much. They said CT scan showed mild stenosis in my celiac artery. Can you get MALS again? I’m struggling. Again, I just do not know what to do or next step to take if any. Thanks! Blessings 🙂

Hi @jayhawk57, I extended the title of this discussion to differentiate it from the other discussion about MALS here:
– Median Arcuate Ligament Syndrome (MALS) https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/

That's quite a number of acronyms FMD (fibromuscular dysplasia), MALS (median arcuate ligament syndrome) and now POTS (postural orthostatic tachycardia syndrome)

I'd like to invite fellow members @astaingegerdm @kariulrich @fmdadvocate @iagrrl @jmmb @elle1233 @ukmalsman @fourof5zs and @azurite into this discussion in the hopes that they may have some thoughts on your situation.

In the meantime, you might also be interested in these related discussions:
– Fibromuscular dysplasia (FMD) https://connect.mayoclinic.org/discussion/discussion-fmd/
– POTS – postural orthostatic tachycardia syndrome https://connect.mayoclinic.org/discussion/pots-postural-orthostatic-tachycardia-syndrome/

Jayhawk, have you had the POTS diagnosis confirmed perhaps with a tilt table test?

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@jayhawk57 – You seem very miserable now- I’m sorry! It is confusing in your situation where you have more than one vascular issue.
I have had/have MALS- I was finally diagnosed 5 years ago after years of pain. My delay in being diagnosed was probably due to several confusing GI issues.
You ask if one could get MALS again. In a way- yes.
If the MALS surgery did not completely restore blood flow in the celiac artery, symptoms can return.
In my case, the celiac artery was quite a bit indented by the pressure of the ligament and symptoms returned. After placement of a stent it has opened enough.
I think your next step would be to see a vascular surgeon. They will be able to better define the extent of the stenosis and decide if something should be done.
FMD can also occur in arteries in the gastrointestinal system – probably less likely for you.

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@colleenyoung

Hi @jayhawk57, I extended the title of this discussion to differentiate it from the other discussion about MALS here:
– Median Arcuate Ligament Syndrome (MALS) https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/

That's quite a number of acronyms FMD (fibromuscular dysplasia), MALS (median arcuate ligament syndrome) and now POTS (postural orthostatic tachycardia syndrome)

I'd like to invite fellow members @astaingegerdm @kariulrich @fmdadvocate @iagrrl @jmmb @elle1233 @ukmalsman @fourof5zs and @azurite into this discussion in the hopes that they may have some thoughts on your situation.

In the meantime, you might also be interested in these related discussions:
– Fibromuscular dysplasia (FMD) https://connect.mayoclinic.org/discussion/discussion-fmd/
– POTS – postural orthostatic tachycardia syndrome https://connect.mayoclinic.org/discussion/pots-postural-orthostatic-tachycardia-syndrome/

Jayhawk, have you had the POTS diagnosis confirmed perhaps with a tilt table test?

Jump to this post

Thank you Coleen for reaching out, I appreciate your reply. Have a blessed week.

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@astaingegerdm

@jayhawk57 – You seem very miserable now- I’m sorry! It is confusing in your situation where you have more than one vascular issue.
I have had/have MALS- I was finally diagnosed 5 years ago after years of pain. My delay in being diagnosed was probably due to several confusing GI issues.
You ask if one could get MALS again. In a way- yes.
If the MALS surgery did not completely restore blood flow in the celiac artery, symptoms can return.
In my case, the celiac artery was quite a bit indented by the pressure of the ligament and symptoms returned. After placement of a stent it has opened enough.
I think your next step would be to see a vascular surgeon. They will be able to better define the extent of the stenosis and decide if something should be done.
FMD can also occur in arteries in the gastrointestinal system – probably less likely for you.

Jump to this post

Thank you for reaching out and sharing your story. I appreciate it. God Bless

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So. I am constantly feeling dizzy or light headed and weak. Mostly when i stand for a long time. Im constantly having stomach problems as well. They found h pylori but i don't think thats whats causing my pain and nausea after meals and drinking. I don't know whats wrong and am scated to get a second opinion.

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Hello,
I'm lost on how to move forward. I have had symptoms for approx 2 yrs. My first full surgery was in 2013. I have moved out out of state since then. I have been very ill. I can't even tolerate fluids much anymore. Pain, weight loss, chronic hypoglycemic, pain and severe diarrhea. They have done CAT scans with contrast that showed celiac artery narrowing again. I do not how much. I also have FMD in renal and carotid artiries and having sudden BP issues and passed out at work. They are looking at me like I'm crazy. All have said it is your anxiety. I get what they mean somewhat. I think with any chronic diseases we can sometimes go through anxiety and depression, only speaking for myself. I'm ready to throw in the towel. I have to work to support my self and have already used all my FMLA for the first time.l ever this year. I have seen nutritionist, and other doctors with no avail. I feel malnourished. Any feedback would be great. Thanks and wish all of you the very best of health as you move forward in this journey.

REPLY

@jayhawk57 It's been a long journey for you so far and it sounds like an organic issue has not been found. I can see that this is greatly impacting your quality of life. It doesn't seem like you have many options at this time, at least that appears to be how you feel. That isn't a comfortable place to be, especially considering your symptoms.

You said that providers have diagnosed the issue as anxiety. I'm wondering if you have considered following the recommendation? Often if a recommendation have been given and the patient doesn't follow it, treatment and exploration ends. Do you feel that has happened?

If you were to treat the anxiety and this did not resolve your symptoms, thisdiagnosis would become nullified and other options must be considered by your providers.

Another option would be go get a second opinion at a specialty or teaching hospital. Have you explored this option?

I'm going to tag members @fighter @brandybarnes @iampsk26 @onamission @renmon56 @nancy926 @laurieb63 that have recently discussed digestive health in hope that they can offer information and/or support.

You'll notice that I moved your question to a previous discussion you post on the same topic. I did this so you could connect with members in a central location.

I'm wondering if you have considered acupuncture or other alternative but evidence based treatments?

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@jayhawk57

Hello,
I'm lost on how to move forward. I have had symptoms for approx 2 yrs. My first full surgery was in 2013. I have moved out out of state since then. I have been very ill. I can't even tolerate fluids much anymore. Pain, weight loss, chronic hypoglycemic, pain and severe diarrhea. They have done CAT scans with contrast that showed celiac artery narrowing again. I do not how much. I also have FMD in renal and carotid artiries and having sudden BP issues and passed out at work. They are looking at me like I'm crazy. All have said it is your anxiety. I get what they mean somewhat. I think with any chronic diseases we can sometimes go through anxiety and depression, only speaking for myself. I'm ready to throw in the towel. I have to work to support my self and have already used all my FMLA for the first time.l ever this year. I have seen nutritionist, and other doctors with no avail. I feel malnourished. Any feedback would be great. Thanks and wish all of you the very best of health as you move forward in this journey.

Jump to this post

@jayhawk57 – Hello again! It sounds like you are doing worse now. What happens when you drink water?
With the FMD and MALS diagnosis I hope you are seeing cardiovascular surgeons. Tests should confirm reason of your suffering.
As mentioned before, it may be a good idea to get a second opinion from a large university hospital , Mayo Clinic or Cleveland Clinic. To me, this looks like the only path to get cure.
I also agree they it may be a good idea to speak with a therapist about your anxiety caused by this illness. I did- my chronic illnesses and pain caused a lot of anxiety that was good to share with a professional.

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