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MALS and lower abdomen chronic pain
My daughter kk er recently had cdif from antibiotics. This triggered a severe lower abdominal pain. In doing a complete work up at the hospital they found a rare condition called Mals. Looking for any journeys regarding this syndrome as well as anyone who experienced severe chronic pain after a cdif infection.
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So sorry to hear about her findings, who, what, and where did she get treated? Can you tell me if she was diagnosed with all 3 at one time and with only 1 Test? I hat a CT w contrast a couple weeks ago that says Nutcracker Syndrome but since I’m not able to see any vascular surgeon till April. I think I have DVT too in my left leg, but they still haven’t been able to rule out, further test needed apparently, my
regular doctor doesn’t know anything about any of this stuff, and I was horrified after being taken into the ER after my husband called 911 only to be negligently taken into be told by the ER doc I would have to follow up without so much as an physical exam,. EMT who took me by Aid car told ER I was experiencing Chronic Back and sciatica and to would need to see a physical therapist. They wouldn’t listen to me and my husband. I feel like I am going to die and nobody has the experience to know what this is, and there is No way I will go to the ER after what happened a couple weeks ago, I’m still traumatized seriously 🧐, I am getting worse every day now, the pain is unmanageable, I am bedridden , and have filed a amendment to ER negligent visit. Thank you for any good advice to help me
I am so sorry you are dealing with horrible pain too and had a negative experience.
Honestly it has been several ER visits, multiple doctors, what I would say misdiagnosis and a lot of pain for my friend. She was finally referred to a MD doctor after hearing a similar story of another Amish young lady. It was several months of waiting for that appointment, a very long trip, but she did finally get some answers and recommendations for further tests to be done at home. (One of those was the plexus block). She now found and has an internal medicine doctor that has been very compassionate and has been helpful in trying to refer to a loser vascular doctor. Thanks to MALS PALS fb group we have stories and doctor recommendations! If you aren’t on that group I would highly recommend it as it is active and filled with friends going through the same thing. It gives hope! You can ask questions!
I hope that you can find help soon. ❤️
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3 Reactions(A closer vascular doctor not a loser…..auto correct and me not reading through before I hit send)
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1 ReactionThanks for the info on your friend it’s a shame that most doctors have never heard of this, I am seeing a specialist in my own town who luckily has 30 years of experience and is a Professor and vascular surgeon at the UW , patients from all around the world go to him ( Dr. Messener), he is one of the few that know anything about these conditions
I hope the best for your friend, please give her a hug for me. I’ll try and keep you posted on my future appointment too
I’m curious if your friend has had blood pressure problems too?
Yes she does/did. POTS and is on a bath blocker to help this. It seems to help her (mostly).
A cardiologist diagnosed and treats this portion of her illness
(Mercy! You would think I would learn to check for autocorrect antics first!!
Beta blocker not bath blocker.)
So sorry to hear this . I had c.diff in 2014 and had to have a fecal transplant. I was diagnosed with mals in 2021 .
I am currently in bedridden nonstop pain living on high dose opiods .
I believe my c.Difficile comes back as repetitive c.diff bc the pain is excruciating.
The mals pain is also excruciating. I keep getting hospitalized for pancreatitis or liver enzymes going very high causing insane pain .
I sm going yo Utah to see Dr. Richards on September 5 th . I’m going to Utah also on September 20 to have my celiac plexus block. I live in Las Vegas and there aren’t any qualified interventional radiologist here. I had a anesthesiologist. Tell me he could do my block last summer and he did it, and did it incorrectly and didn’t know what he was doing. Anyways, I believe due to the mals and the fact that our intestines ,pancreas and liver do not receive the proper blood flow and we experience constipation which is why we get c.difficile sale in SIBO . and other infections.