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BillyMac65 (@billymac65)

Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: Jun 24 3:56pm | Replies (1415)

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Hi again everyone! Well I had my surgery to remove the abdominal masses and they turned out to be lipomas. They were both benign. I have also been diagnosed with central sleep apnea so I was prescribed an ASV machine which I use every night. My MP is still active. I rarely have any appetite at all. So I force myself to eat. They have taken away several of the meds I was on with the intent of that being the reason for always being tired with heavy limbs, fatigued all of the time with no relief from a good nights sleep. Any advice on these continuing conditions? There are days when even getting out of bed is a chore. It’s getting very frustrating to not get any relief and for the doctors to not be able to get it figured out. I go for an electromyoggraphy and nerve condition test this week. The pain management doctor mentioned peripheral neuropathy or peripheral radiculopathy. The appt is this Tuesday so I will let you know how that turns out. Has anyone had these concerns/symptoms that you are dealing with?

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Replies to "Hi again everyone! Well I had my surgery to remove the abdominal masses and they turned..."

John, I wish you all the best. Your symptoms sound so similar to mine. Diagnosed with MP a year ago via CT, now diagnosed with central sleep apnea and neuropathy (mainly toes). Thyroid, B12, glucose blood levels all okay. MRIs and EMG showed no radiculopathy . Just plain weird. Zofram gets me through the nausea and sometimes a Tylenol 3 for abdominal pain. Abdominal symptoms come and go. I suppose there are worse things in the world; but, the bad days are becoming more frequent. I am glad your lipomas were benign….that’s good news! ~Bill

Hi @dennis127, sounds like really good news regarding the surgery and it certainly sounds like you are making great progress getting help. Sometimes it is very frustrating waiting for a fix for some very complex medical issues. I think you had an appointment today? How did that go? I have never heard of an electromyography but will look it up. Got to look up the peripheral radiculophy also.
Hang in there and keep improving. You sound like you are doing better, I think that is a positive sign.
As always, best wishes for you and your wife.

Hi Von,
It is always so good to hear from you and I hope that you are doing good as well. I passed along your well wishes to my wife, she appreciated that. We are on a 3 week chemo therapy for her now, instead of weekly. It’s more of a maintenance dose until her next scans which are scheduled for May 8th. Then they decide next steps, depending on the progression of the cancer, or the lack there of (which is what is in our prayers). My electromyography and NCT (nerve conduction test ) went well yesterday. They basically stick needles in you and send shock signals to the nerve points to see what’s going on with the nerves in my legs and what’s causing the swelling, the pain and fatigue that’s keeping me from walking more than a few steps. I get those results back this Friday when I have a follow up appointment. The follow up appt is to inject my back with medial branch block epidural injections to assist with my lower back pain. I will let you know how it goes, what the results of the electromyography were and how the pain management injections went.
As always, thanks for your support and I’ll talk to you soon.

Hi Bill
Yea, our symptoms sound very similar. I am on an ASV machine for my central sleep apnea. It seems to be working for me. What are you using for your central sleep apnea? I get the results back from my electromyography this Friday to see what’s causing the pain and swelling in my legs? If it is indeed related to my lower back pain I have injections this Friday called Medial branch block injections. This is very frustrating because I used to be on my feet like 10-12 hours a day at work, now I have to use a motorized cart just to get around at the drugstore or grocery store. But like you said things could be worse. I had to file for Social security disability and should hopefully hear back from them soon. It’s humbling to be in this condition without any answers but we are trying. Prayers and a positive attitude get us thru each day and our motto is “the 2 days we won’t worry about are yesterday and tomorrow”.
I hope you continue to do well!
Best wishes to you!

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