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tammy64
@tammy64

Posts: 8
Joined: Aug 14, 2018

Dealing with "muscular skeletal breakdown", colitis, depression, etc

Posted by @tammy64, Tue, Aug 14 1:15pm

My son is only 23. He use to be a huge advocate of the gym and ate very healthy (fish, chicken, steamed veggies, brown rice, yams, etc… no butters, sugars or processed foods etc.) The last 3 years he's gone from a 205 lb muscle bound man (no steriods) to a 155 lb man that has had nothing but issues affecting his entire body. He's been diagnosed with colitis, muscular skeletal breakdown, IBS, has symptoms of auto-immune disease but none of the tests have been conclusive. He has tried every doctor imaginable to help with his intestinal issues as well as total body aches and pains. He has done food sensitivity tests and did elimination of the highly sensitive foods and slowly added some back. He is now on The Low FODMAP Diet along with supplements such as anti-oxidants, enzymes and probiotics. Now a GI doctor has him on antibiotics for his IBS (but I'm afraid that's going to cause even more stress on his body)…. He's in so much pain, daily, that has been going on for years and he's beginning to think there is no help. He has been in physical therapy for over a year now and is religious with the stretches and exercises to home given by the pt. He gets massages, had acupuncture, does trigger point release, rolls, and recently did a float spa. I hate to admit that he has mentioned he'd rather die than continue in this pain! I'm searching for HELP, a direction to turn him to to get a complete diagnosis and stop getting the run around. Where do we go from here? Sounds like his body is rejecting everything. Please help

REPLY

Get him into Theapy right away. I going to do that also. There must be some new diseases out there. It has to be hard on avyounger person. So this came on suddenly?

The other night I heard a speaker talk about sudden illness or damage to body when we push it to the max. There is a limit and had nothing to do with steroids. If I see it again, I will let you know.

@tammy64

I'm so sorry to read of your son's distress. I'm a Volunteer Mentor with Mayo Connect and not a medical professional. I can't offer medical diagnosis or medical solutions, but I do offer my experience, knowledge, and support.

At this point from your description, I'm very concerned about your son's situation. If at all possible, please obtain an immediate appointment with Mayo Clinic for a complete workup and diagnosis. They are great diagnosticians. It sounds like your son needs immediate help. Look at the top of your screen on the right and you will find, REQUEST APPOINTMENT. His doctors can also help by requesting an immediate appointment at Mayo Clinic. There are 3 clinics, in Rochester, MN, Jacksonville, FL, and Scottsdale, AZ. Try at the one closest to you, but I recommend you go to the one that can get him in the soonest.

I can imagine your distress about his loss of health over 3 years. Do you know, or have you asked if he's had an aids/hiv test? If he hasn't, that might be a step to take before his appointment with Mayo Clinic. Not that I think he has it, but it will need to be ruled out. I hope the best for you and your son, and will hold you both in love and light.

Gail
Volunteer Mentor

@oregongirl

Get him into Theapy right away. I going to do that also. There must be some new diseases out there. It has to be hard on avyounger person. So this came on suddenly?

The other night I heard a speaker talk about sudden illness or damage to body when we push it to the max. There is a limit and had nothing to do with steroids. If I see it again, I will let you know.

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Thank you. I would like to see that video if it is available. 🙂

@gailb

@tammy64

I'm so sorry to read of your son's distress. I'm a Volunteer Mentor with Mayo Connect and not a medical professional. I can't offer medical diagnosis or medical solutions, but I do offer my experience, knowledge, and support.

At this point from your description, I'm very concerned about your son's situation. If at all possible, please obtain an immediate appointment with Mayo Clinic for a complete workup and diagnosis. They are great diagnosticians. It sounds like your son needs immediate help. Look at the top of your screen on the right and you will find, REQUEST APPOINTMENT. His doctors can also help by requesting an immediate appointment at Mayo Clinic. There are 3 clinics, in Rochester, MN, Jacksonville, FL, and Scottsdale, AZ. Try at the one closest to you, but I recommend you go to the one that can get him in the soonest.

I can imagine your distress about his loss of health over 3 years. Do you know, or have you asked if he's had an aids/hiv test? If he hasn't, that might be a step to take before his appointment with Mayo Clinic. Not that I think he has it, but it will need to be ruled out. I hope the best for you and your son, and will hold you both in love and light.

Gail
Volunteer Mentor

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Mayo Clinic has told my son they don't make appointments for 'chronic pain' even though a doctor had referred him. So frustrating

@gailb

@tammy64

I'm so sorry to read of your son's distress. I'm a Volunteer Mentor with Mayo Connect and not a medical professional. I can't offer medical diagnosis or medical solutions, but I do offer my experience, knowledge, and support.

At this point from your description, I'm very concerned about your son's situation. If at all possible, please obtain an immediate appointment with Mayo Clinic for a complete workup and diagnosis. They are great diagnosticians. It sounds like your son needs immediate help. Look at the top of your screen on the right and you will find, REQUEST APPOINTMENT. His doctors can also help by requesting an immediate appointment at Mayo Clinic. There are 3 clinics, in Rochester, MN, Jacksonville, FL, and Scottsdale, AZ. Try at the one closest to you, but I recommend you go to the one that can get him in the soonest.

I can imagine your distress about his loss of health over 3 years. Do you know, or have you asked if he's had an aids/hiv test? If he hasn't, that might be a step to take before his appointment with Mayo Clinic. Not that I think he has it, but it will need to be ruled out. I hope the best for you and your son, and will hold you both in love and light.

Gail
Volunteer Mentor

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@tammy64 @colleenyoung

When you are arranging the appointment, your son is looking for:

"A complete diagnosis looking for the root cause for his multiple issues, colitis, 50 pound weight loss, muscular skeletal breakdown that has been happening over the past 3 years and is getting worse despite doctor treatment."

His chronic pain is a result of the other issues. Your son needs to call Mayo Clinic himself now and say what I said above. Please make sure you keep trying to get the appointment. By the way, in my opinion, his doctor should have known better than to refer him for "chronic pain." Hang in there until you get, nicely, what you need for your son. I'm in your corner!

Gail
Volunteer Mentor

Liked by lioness, tammy64

@tammy64 As a retired nurse. You need to get him into a clinic if not Mayo there,s Cleveland clinic, John Hopkins but he needs to be seen by other Dr,s not just one till you fi nd out what is going on and he can get help for this.I wish you luck

What part of the country are you in?

@lioness

@tammy64 As a retired nurse. You need to get him into a clinic if not Mayo there,s Cleveland clinic, John Hopkins but he needs to be seen by other Dr,s not just one till you fi nd out what is going on and he can get help for this.I wish you luck

What part of the country are you in?

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Thank you for your advice.. he is in AZ.. he has gone to primary docs, nutritionists, multiple GIs, naturopaths, neurologists, podiatrists, physical therapists, acupuncturists and masseuses with multiple blood tests, food sensitivity tests, coloscopies etc .. nothing comes up as a complete diagnosis .. it’s so discouraging

@lioness

@tammy64 As a retired nurse. You need to get him into a clinic if not Mayo there,s Cleveland clinic, John Hopkins but he needs to be seen by other Dr,s not just one till you fi nd out what is going on and he can get help for this.I wish you luck

What part of the country are you in?

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@tammy64 since you are in Az. Can you get to the Mayo clinic in Scottsdale? Sounds like he needs to see a rheumatologist ,as well as other specialists have him call Mayo Colleen Young can help you out as Gail stated but if all fails have him go to Emergency Room they will do test there and this way he can be admitted for a full evaluation.Something is causing him to have all these problems Hope all this helps let us know his outcome but dont wait.

Hi, so sorry your son is suffering. I found an EXCELLENT natural remedy for IBS. Peppermint Oil Capsules. Check online for lowest price. I suffered for years with painful IBS. Best remedy for the chronic belly pain no doctor could fix. I find peppermint oil capsules work best for constipation dominant IBS. I have the mixed form. Long bouts of constipation alternating sometimes with long episodes of diaharrea. I only take the capsules during the constipation phase. I treat the diaharrea with dietary remedies. Best wishes

@lioness

@tammy64 As a retired nurse. You need to get him into a clinic if not Mayo there,s Cleveland clinic, John Hopkins but he needs to be seen by other Dr,s not just one till you fi nd out what is going on and he can get help for this.I wish you luck

What part of the country are you in?

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@tammy64 I understand your discouragement. For years and years nobody could figure out what was happening to me. I finally went to Mayo in Rochester where they discovered what was going on. It took them ten days but they did figure it out and were able to treat me successfully.
They have discovered three different issues where nobody else could. Only place I go to now.
As others in this thread are suggesting I hope you can get to Mayo in AZ. This is where you need to really dig out your patience; all good things will happen in time. I know, I’ve been down that road for years. Wishing you all the best.

@tammy64 Lots of good advice on these post One thing for diarrhea we did for patients Dr put them on a BRAT diet ,dry toast,rice,banana applesauce no sugar

@lioness

@tammy64 As a retired nurse. You need to get him into a clinic if not Mayo there,s Cleveland clinic, John Hopkins but he needs to be seen by other Dr,s not just one till you fi nd out what is going on and he can get help for this.I wish you luck

What part of the country are you in?

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Thank you …
Does Mayo Clinic have an emergency room?

@lioness

@tammy64 As a retired nurse. You need to get him into a clinic if not Mayo there,s Cleveland clinic, John Hopkins but he needs to be seen by other Dr,s not just one till you fi nd out what is going on and he can get help for this.I wish you luck

What part of the country are you in?

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Yes, in MN it’s at either St. Mary’s Hospital or at Methodist hospital. In AZ you’d need to know which hospital is the Mayo affiliate and visit that hospitals ER.

@lioness

@tammy64 As a retired nurse. You need to get him into a clinic if not Mayo there,s Cleveland clinic, John Hopkins but he needs to be seen by other Dr,s not just one till you fi nd out what is going on and he can get help for this.I wish you luck

What part of the country are you in?

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@tammy 64 I cant answer that but you can contact Office of Patient Experience to find out Im tagging @gailb ,@Colleen Young for there help

Hi @tammy64
Members here have given you wise advice. As @gailb suggested, your son might wish to ask his doctor for the details of the referral that s/he sent to Mayo Clinic. It is usually helpful to have a doctor referral since they can send a medical history and test history. However, if his doctor did not provide this information, he can contact Mayo Clinic AZ directly and self-refer. If possible have copies of tests he has done and details about the past medical history since his deterioration began.

Here is the contact information for Mayo Clinic: mayocl.in/1mtmR63

You may also be interested in following the discussions in the Digestive Health group: https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/

It is hard to watch our children suffer, even when they are adults. Please keep us posted.

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