Hello all,
Let me tell you my whole story...
I started having pain(muscle ache) in my shoulder March first. Went to a redicare Dr on March 11th and let the Dr know the muscle pain is also in my arm as well as shoulder and moving around. Was told this was myalagia and to follow up with primary if it persisted. I followed up with primary on March 21st and informed him the body pain is moving around to both legs, arms, and back. Was told these were myalagia and to come back in 6 to 8 weeks if it persisted.
I came back to the dr on April 21st to let him know the pain is still there but now I also have fatigue. At that point a CBC blood test was ordered. Within a week of the blood test my aches started to stop but started to become musclr weakness and sudden muscle loss and seem to come on suddenly..neck, arms, forearms and legs. Along with this muscle loss I had pain in my upper left rib cage that was also in my back... Usuauy inflamed most when eating.
On April 28th got my blood test back and my liver enzymes were slightly elevated...alt 93 and ast 63. Also ferritin was 437. Also when I went into the appt I was down from 288 pounds to 280 pounds without trying from March 21st to April 21st. Also I was starting to have large greasey stools and they were frequent.At this point I did some research and was scared I had pancreatic cancer.
My Dr expressed to me that they believed all my issues we're related to anxiety and persribed me anxiety pills. The next day may 1st I got in wtih a gastroenterologist and showed him my results and symptoms. My gastroenterologist ordered an ultrasound and I was able to get my test done within the week. I got my ultrasound results and it showed I had a fatty liver and that there was a spot that wasn't seen well on the ultrasound but other than that they didn't see any lesions.
Due to my physical symptoms I followed up with gastroenterologist and he said no pancreatic cancer due to ultrasound and put me on a fat free diet for my liver. I followed his instructions and have been on the fat free diet. I followed up with my normal Dr May 15 and was down to 275 pounds and explained the muscle loss is continuing and am still extremely scared I have pancreatic cancer and would like a CT scan.
I was denied the scan so I scheduled an executive physical to try to figure out what was going on with me which was may 22. At this physical I had more blood tests, bone density test, stress test, cardiac testing, lung scan, dermatologist review. At this appointment the only new thing found was a small spot in lung that they weren't worried about and also that my testosterone is low at 243. He also said I should get a CT scan to make sure I don't have pancreatic cancer but my primary needs to schedule it. Also at this appointment I was now down to 271 pounds.
I followed up with my Dr on May 28th. I let him know that the Dr from executive physical said I should get a CT scan and I asked if he reviewed my resulta from executive physical but he couldn't locate them but said he would get them, review them and get back with me. Fortunately for me he did schedule a CT scan but told me if I didn't have pancreatic cancer we would get me into rheumatologist.
I was fortunate to get in quickly for the CT scan bl and got my results back on june 1st in my online portal. The only thing I read was that I had 2 uncomplicated hernias and a little sparring on my gallbladder but nothing wrong with my pancreas which was a relief but still my muscle wasting hasn't been addressed.
I waited till June 5th and called my Dr office and wanted to schedule a follow up to review my ultrasound. Was told the first time i could get in was june 28th. During this waiting period my symptoms started to change and started having swallowing issues and started to get twitching throughout body mostly prevelent at night.
I left a message for my Dr on the 12th to let him know that maybe I should get into a neurologist because of my new symptoms. I didn't receive a call back so I went into the office on the 15th to follow up in person but was told be the drs assistant that I could either try to be a walk in patient at Mayo or take a rheumatologist referral. I elected for rheumatologist referral but I have still yet to get that referral.
After that appointment I tried to contact Mayo and was denied an appointment. At this point my next follow up was with my gastroenterologist on June 18th and I let him know that about new symptoms and he scheduled me a esophogram test which got scheduled for June 21st. At this appointment I was now down to 262 pounds.
While I am on a diet the weight and muscle is coming off at a crazy rate. The following day my swallowing became an issue that it caused me to have to go to the Er because I threw up 4 times due to trying to clear my throat. The Er basically told me that I need to get my esophogus tested and sent me home.
I just now am sitting in the parking lot after my test feeling lost because I'm falling apart at a fast rate and I am afraid I have als and can't get into a neurologist. I have tried to schedule an appointment myself and can't due to my insurance which requires a referral which my normal Dr wont give me. So I now have to wait a week until I follow up with my primary and hope that I can convince him to let me see a neurologist....
Has anyone else had this struggle before? I feel like I'm falling apart at an extreme rate and don't know what to do. I have lost muscle strength and mass in hands,calves, forearms, back, and neck. They all seem to be progressing together.
If anyone has advice please let me know
Let me tell you my whole story...
I started having pain(muscle ache) in my shoulder March first. Went to a redicare Dr on March 11th and let the Dr know the muscle pain is also in my arm as well as shoulder and moving around. Was told this was myalagia and to follow up with primary if it persisted. I followed up with primary on March 21st and informed him the body pain is moving around to both legs, arms, and back. Was told these were myalagia and to come back in 6 to 8 weeks if it persisted.
I came back to the dr on April 21st to let him know the pain is still there but now I also have fatigue. At that point a CBC blood test was ordered. Within a week of the blood test my aches started to stop but started to become musclr weakness and sudden muscle loss and seem to come on suddenly..neck, arms, forearms and legs. Along with this muscle loss I had pain in my upper left rib cage that was also in my back... Usuauy inflamed most when eating.
On April 28th got my blood test back and my liver enzymes were slightly elevated...alt 93 and ast 63. Also ferritin was 437. Also when I went into the appt I was down from 288 pounds to 280 pounds without trying from March 21st to April 21st. Also I was starting to have large greasey stools and they were frequent.At this point I did some research and was scared I had pancreatic cancer.
My Dr expressed to me that they believed all my issues we're related to anxiety and persribed me anxiety pills. The next day may 1st I got in wtih a gastroenterologist and showed him my results and symptoms. My gastroenterologist ordered an ultrasound and I was able to get my test done within the week. I got my ultrasound results and it showed I had a fatty liver and that there was a spot that wasn't seen well on the ultrasound but other than that they didn't see any lesions.
Due to my physical symptoms I followed up with gastroenterologist and he said no pancreatic cancer due to ultrasound and put me on a fat free diet for my liver. I followed his instructions and have been on the fat free diet. I followed up with my normal Dr May 15 and was down to 275 pounds and explained the muscle loss is continuing and am still extremely scared I have pancreatic cancer and would like a CT scan.
I was denied the scan so I scheduled an executive physical to try to figure out what was going on with me which was may 22. At this physical I had more blood tests, bone density test, stress test, cardiac testing, lung scan, dermatologist review. At this appointment the only new thing found was a small spot in lung that they weren't worried about and also that my testosterone is low at 243. He also said I should get a CT scan to make sure I don't have pancreatic cancer but my primary needs to schedule it. Also at this appointment I was now down to 271 pounds.
I followed up with my Dr on May 28th. I let him know that the Dr from executive physical said I should get a CT scan and I asked if he reviewed my resulta from executive physical but he couldn't locate them but said he would get them, review them and get back with me. Fortunately for me he did schedule a CT scan but told me if I didn't have pancreatic cancer we would get me into rheumatologist.
I was fortunate to get in quickly for the CT scan bl and got my results back on june 1st in my online portal. The only thing I read was that I had 2 uncomplicated hernias and a little sparring on my gallbladder but nothing wrong with my pancreas which was a relief but still my muscle wasting hasn't been addressed.
I waited till June 5th and called my Dr office and wanted to schedule a follow up to review my ultrasound. Was told the first time i could get in was june 28th. During this waiting period my symptoms started to change and started having swallowing issues and started to get twitching throughout body mostly prevelent at night.
I left a message for my Dr on the 12th to let him know that maybe I should get into a neurologist because of my new symptoms. I didn't receive a call back so I went into the office on the 15th to follow up in person but was told be the drs assistant that I could either try to be a walk in patient at Mayo or take a rheumatologist referral. I elected for rheumatologist referral but I have still yet to get that referral.
After that appointment I tried to contact Mayo and was denied an appointment. At this point my next follow up was with my gastroenterologist on June 18th and I let him know that about new symptoms and he scheduled me a esophogram test which got scheduled for June 21st. At this appointment I was now down to 262 pounds.
While I am on a diet the weight and muscle is coming off at a crazy rate. The following day my swallowing became an issue that it caused me to have to go to the Er because I threw up 4 times due to trying to clear my throat. The Er basically told me that I need to get my esophogus tested and sent me home.
I just now am sitting in the parking lot after my test feeling lost because I'm falling apart at a fast rate and I am afraid I have als and can't get into a neurologist. I have tried to schedule an appointment myself and can't due to my insurance which requires a referral which my normal Dr wont give me. So I now have to wait a week until I follow up with my primary and hope that I can convince him to let me see a neurologist....
Has anyone else had this struggle before? I feel like I'm falling apart at an extreme rate and don't know what to do. I have lost muscle strength and mass in hands,calves, forearms, back, and neck. They all seem to be progressing together.
If anyone has advice please let me know
Last edited by a moderator:
