Cfs/me part 1-2-3 current condition, surgeries and others info at bottom of thread

Messages
39
Hi Everyone,
I have something wrong with me and i have been to a lot of doctors and have had a lot of test done.
Most doctors dont know what is wrong with me.
I went to Duke a few months ago and that Dr. said possible Long covid.
My PCP is now thinking I have CFS/Me.
If anyone is interested I can post Brain mri results, Ct results and blood work results.
This will be a very long discusion
With some bad spelling and run on sentences.
If anyone is interested just reply to my post.
Thank you and Have a Great Day!
 

Rufous McKinney

Senior Member
Messages
14,622
Kudos for getting some good testing out of the medical system.

I'm interesting in hearing about the MRI, my sort of doctor thinks I should get one of those.
My PCP is now thinking I have CFS/Me.
Very sorry to hear that. It's possible that ME has set in following the long COVID. It might be a type of reactivation of Epstein Barr, or something else.

I hope you can find some ideas around here of things to try which might help.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,254
Location
australia (brisbane)
Hi Everyone,
I have something wrong with me and i have been to a lot of doctors and have had a lot of test done.
Most doctors dont know what is wrong with me.
I went to Duke a few months ago and that Dr. said possible Long covid.
My PCP is now thinking I have CFS/Me.
If anyone is interested I can post Brain mri results, Ct results and blood work results.
This will be a very long discusion
With some bad spelling and run on sentences.
If anyone is interested just reply to my post.
Thank you and Have a Great Day!
Post away. We can all compare notes👍
 
Messages
39
Kudos for getting some good testing out of the medical system.

I'm interesting in hearing about the MRI, my sort of doctor thinks I should get one of those.

Very sorry to hear that. It's possible that ME has set in following the long COVID. It might be a type of reactivation of Epstein Barr, or something else.

I hope you can find some ideas around here of things to try which might help.
Hi
It is going to take me a few days to get everything arranged and I will have to post it in small posts.
Way too much info for a single post!
I do have the brain mri scan copied
I did have a slight headache all the time for one month afterwards.
And I am allergic to the dye contrast
So it is a dye free Mri.
Mri brain scan results

1. No acute intracranial abnormality. 2. Mild scattered nonspecific subcortical hyperintense T2/FLAIR white matter lesions, commonly sequelae of chronic microvascular ischemic disease, without findings specific for underlying demyelinating process.

Narrative

MRI BRAIN WITHOUT CONTRAST, 1/13/2025 2:16 PM INDICATION: Alternation of consciousness, rule out MS or similar, Transient alteration of awareness \ R40.4 Transient alteration of awareness COMPARISON: None TECHNIQUE: Multiplanar, multi-sequence magnetic resonance imaging of the brain was performed without contrast. FINDINGS: Calvarium/skull base: No focal marrow replacing lesion. Mild visualized upper cervical degenerative changes. Orbits: No mass lesion. Paranasal sinuses: Mild left maxillary mucosal thickening. Brain: No evidence of acute infarct. No mass effect. No evidence of acute hemorrhage. No hydrocephalus. Mild scattered nonspecific subcortical hyperintense T2/FLAIR white matter signal abnormalities, without visualized callososeptal or juxtacortical involvement. Normal appearance of the major intracranial arteries and dural venous sinuses. Partially empty sella.

I did have a mild constant headache

For one month after the Mri.
 
Messages
39
my pet scan is on a disk I was provided

But the software to look at the information, is not available to me. Why can't I look at my own pet scan?
The software should be on the disc.
Have you looked in the disc files to see if it needs to be installed?
I will ask my Daughter because she looks at her scans on a Pc.
Unless someone else tells you first.
 
Messages
39
The software should be on the disc.
Have you looked in the disc files to see if it needs to be installed?
I will ask my Daughter because she looks at her scans on a Pc.
Unless someone else tells you first.
My Daughter says she just puts in the cd and selects the files
 
Messages
39
Probably....did you write that type of thing up in Your Profile? I'll hope somebody better at navigating around here arrives-: I did not find anything under your profile...
I wrote some in my profile.
I am new to the site and figuring out where to post things, I did ask for some help, and i did get a Great response.
I did get a message saying my post or responses may be hidden for some time.
 

almost

Senior Member
Messages
212
I wrote some in my profile.
Another thing you can do is go back to your first post and, if the 'Edit' button is still at the bottom of it, click edit and add some more information in that post. I often go back to a member's first post to learn about their history. This is often a common place for people to share the thumbnail sketch of their story/history.

You're doing great here. I look forward to hearing more from you, only as you are able.
 
Messages
39
Another thing you can do is go back to your first post and, if the 'Edit' button is still at the bottom of it, click edit and add some more information in that post. I often go back to a member's first post to learn about their history. This is often a common place for people to share the thumbnail sketch of their story/history.

You're doing great here. I look forward to hearing more from you, only as you are able.
Hi
I apologize for the late response.
I have been on the phone all day with one of my Doctors and my insurance company , they have denied a new biologic med.
Thanks for the Information!
 
Messages
39
Hi Everyone.
If it is possible, Can you reply so my whole post is not constantly duplicated?
If you can just copy and paste from my post any questions , your observations or reccomendations.
With my Cfs i now have a short attention span, others may have the same issues.
I also have very little Motivation for correct Grammer. Sorry!
I am going to use my introduction as Part 1.
It has been modified from it's Original version.
If i dont respond to Anyones reply,
Just reply you did not get an answer.
That way when I recieve an email notification on a respose I can easily find your missed question.
Note it may take a day or two for me to respond to any Question.
With my Cfs I may lack the energy to even check my post or emails.

Part 1 Introduction
Do you have ME/CFS?YesLocationNc.GenderMaleWhen did you come down with ME/CFS?Roughly 4 years agoAny treatments/protocols you are trying? Any doctors or practitioners you have been seeing?Presently patching me up useing Adderall untill something can be foundME/CFS severity and level of activity (scale of 0 to 10)1 — SEVERE: Bedridden most of day, very rarely leave house.Please tell us a bit about your ME/CFS history and symptoms so members can respond appropriatelyI
have severe chronic fatigue, it did come and go. 3 months i may feel fine
Rest of the time feel extremely tired.
I also have had severals days off and on I would wake up feeling fine and then go back to being exhausted.
Starting this year it has all been downhill except for one week.
Hi Everyone.
I have extreme CFS and i have been to hundreds of Doctors and about every test a Dr can think of has been done.
I am hoping I can find some help here.Omicron virus was first detected in Nc in December around the 7th.
I aquired it on December 18th , I was the sickest I have ever been in my life for two weeks!
Roughly 7 months latter I woke up one morning with Cf , I pushed through it until I could find a PCP Dr.
I did not have one because I only have had a few minor colds etc. for the last 20 years.
I hope this was legible !
Thanks
 
Messages
39
If it is possible, Can you reply so my whole post is not constantly duplicated?
If you can just copy and paste from my post any questions , your observations or reccomendations.
With my Cfs i now have a short attention span, others may have the same issues.
I also have very little Motivation for correct Grammer. Sorry!
I am going to use my introduction as Part 1.
It has been modified from it's Original version.
If i dont respond to Anyones reply,
Just reply you did not get an answer.
That way when I recieve an email notification on a respose I can easily find your missed question.
Note it may take a day or two for me to respond to any Question.
With my Cfs I may lack the energy to even check my post or emails.

Part 1 Introduction
Do you have ME/CFS?YesLocationNc.GenderMaleWhen did you come down with ME/CFS?Roughly 4 years agoAny treatments/protocols you are trying? Any doctors or practitioners you have been seeing?Presently patching me up useing Adderall untill something can be foundME/CFS severity and level of activity (scale of 0 to 10)1 — SEVERE: Bedridden most of day, very rarely leave house.Please tell us a bit about your ME/CFS history and symptoms so members can respond appropriatelyI
have severe chronic fatigue, it did come and go. 3 months i may feel fine
Rest of the time feel extremely tired.
I also have had severals days off and on I would wake up feeling fine and then go back to being exhausted.
Starting this year it has all been downhill except for one week.
Hi Everyone.
I have extreme CFS and i have been to hundreds of Doctors and about every test a Dr can think of has been done.
I am hoping I can find some help here.Omicron virus was first detected in Nc in December around the 7th.
I aquired it on December 18th , I was the sickest I have ever been in my life for two weeks!
Roughly 7 months latter I woke up one morning with Cf , I pushed through it until I could find a PCP Dr.
I did not have one because I only have had a few minor colds etc. for the last 20 years.
I hope this was legible !
Thanks
Part- 2
Before my sickness and after.


Before Cfs

1- I was very phisicaly fit.

2- I rode my bike 20 miles every morning except weekends before working 9 to 12 hrs a day.

3- I very seldom had any kind of sickness for years.

4- Height 5'9" , weight 180 Lbs

5- Medication and supplements None.

6- I cold bench press dead weight 265 Lbs ten times straight , without any problem.



After I had Omicron 7 months latter.

1- Woke up one morning totally exhausted, I could barely get out of bed.

2- Found a PCP Dr.

3- Was sent for basic tests

4- through tests and other procedures I found out the hard way that I was now allergic to Red dye #42, Photo allergic reactions to iodine. Other reactions to lidocaine, every pain killer, prescription and surgery related except Dilaudid.

And a lot more medications than I can list.

5- I have had 5 dosages of covid vaccines. And I have had covid 3 times.

6- Severe fatigue , I have been bed or couch ridden most of the time.

7- I sometimes get a small patch of normal looking skin on my right shoulder blade, it has never been red looking or swollen and its roughly one inch square.

If i barely touch it or my shirt touches it I get like sciatic nerve pain down my left leg and down to my left foot.

If the area gets touch while i am standing my knee buckles instantly and i fall down.

I get this out of the blue, may last a month then just vanishes, but reappears randomly.

I had trigger point injections it did not work.

Went to get nerve ablation and I was told they did not know how to even attempt it.

My fix has been covering it with very thick medical tape, this reduces the sensitivity.

8- I stay sick with colds and fever blisters, never had a single blister in my life untill now.

9- Height 5'7" , weight 240 Lbs

10- My eyes, at least once a week

My left eye on my ear side will start feeling like i have trash in it, when I start rubbing it the trash feeling starts to move across my eye towards my nose then it starts in my right eye and goes across my eye towards my right ear.

Then a liquid starts coming out both corners on each ear side that turns into a clear hard specks.

It resembles conjunctivitis, but my eyes dont turn blood shot or anything and it only lasts around one hour and then it gone.

I don't have any blurred vision at anytime.

I dont have dry eyes ever.

My Pcp has prescribed medicated eye drops for infection and special medicated eye drops and nothing has worked.

My Dr has even sent me to an Ophthalmology of Internal Medicine

And the Dr said what my eyes were doing is unknown. The Dr took samples and tested my eyes and after the sample test results came back I got a clean bill of health.

It looks like Lymphatic fluid.

11- Current weight at Dr office two weeks ago 159 Lbs. Current weight lot 83 pounds.

12- Medications presently on 4 , supplements/vitamins at least 6

They will all be a latter part.

13- Very high pain tolerance, I dont feel pain like everyone else.

I have sanitized and stitched myself up, most stitches at one time 11.

14- I struggle to do 3 pushups,

I wobble and shake standing up from a sitting position.
 
Messages
39
Part- 2
Before my sickness and after.


Before Cfs

1- I was very phisicaly fit.

2- I rode my bike 20 miles every morning except weekends before working 9 to 12 hrs a day.

3- I very seldom had any kind of sickness for years.

4- Height 5'9" , weight 180 Lbs

5- Medication and supplements None.

6- I cold bench press dead weight 265 Lbs ten times straight , without any problem.



After I had Omicron 7 months latter.

1- Woke up one morning totally exhausted, I could barely get out of bed.

2- Found a PCP Dr.

3- Was sent for basic tests

4- through tests and other procedures I found out the hard way that I was now allergic to Red dye #42, Photo allergic reactions to iodine. Other reactions to lidocaine, every pain killer, prescription and surgery related except Dilaudid.

And a lot more medications than I can list.

5- I have had 5 dosages of covid vaccines. And I have had covid 3 times.

6- Severe fatigue , I have been bed or couch ridden most of the time.

7- I sometimes get a small patch of normal looking skin on my right shoulder blade, it has never been red looking or swollen and its roughly one inch square.

If i barely touch it or my shirt touches it I get like sciatic nerve pain down my left leg and down to my left foot.

If the area gets touch while i am standing my knee buckles instantly and i fall down.

I get this out of the blue, may last a month then just vanishes, but reappears randomly.

I had trigger point injections it did not work.

Went to get nerve ablation and I was told they did not know how to even attempt it.

My fix has been covering it with very thick medical tape, this reduces the sensitivity.

8- I stay sick with colds and fever blisters, never had a single blister in my life untill now.

9- Height 5'7" , weight 240 Lbs

10- My eyes, at least once a week

My left eye on my ear side will start feeling like i have trash in it, when I start rubbing it the trash feeling starts to move across my eye towards my nose then it starts in my right eye and goes across my eye towards my right ear.

Then a liquid starts coming out both corners on each ear side that turns into a clear hard specks.

It resembles conjunctivitis, but my eyes dont turn blood shot or anything and it only lasts around one hour and then it gone.

I don't have any blurred vision at anytime.

I dont have dry eyes ever.

My Pcp has prescribed medicated eye drops for infection and special medicated eye drops and nothing has worked.

My Dr has even sent me to an Ophthalmology of Internal Medicine

And the Dr said what my eyes were doing is unknown. The Dr took samples and tested my eyes and after the sample test results came back I got a clean bill of health.

It looks like Lymphatic fluid.

11- Current weight at Dr office two weeks ago 159 Lbs. Current weight lot 83 pounds.

12- Medications presently on 4 , supplements/vitamins at least 6

They will all be a latter part.

13- Very high pain tolerance, I dont feel pain like everyone else.

I have sanitized and stitched myself up, most stitches at one time 11.

14- I struggle to do 3 pushups,

I wobble and shake standing up from a sitting position.
Part -3

Present and past medical conditions

1-Alpha-gal syndrome, from a tick bite.

I cannont eat beef , except for a filet cut.

I cannot eat store bought eggs, but i can eat open range or home raised eggs.

2-Muscle tension dysphonia (MTD)

Of the throat.

3- I had or still have H. pylori

4- Multiple pulmonary nodules

I have a yearly Ct scan done and in 3 years they have not changed in size.

Surgeries , injuries and other sickness

1-Right hand and arm reconstructed after industrial accident. 30 yrs ago

2- Double hernia repair with mesh 20 yrs ago.

3- Kidney stone removal surgery in the last two months.

4- Multiple stitches from cuts over the years

5-Broke nose 12 yrs ago

6-One cracked rib 6 yrs ago

7- When i was born I was strangled by umbilical cord.

8- Complete torn tendom during treadmill stress test on right elbow

The Stress test was planned to be a two part procedure. First get my heart rate up , then step off and lay on the bed then have my heart checked with the doppler ultrasound.

What actually occured About 3 minutes in walking my legs gave out and i grabbed the handrail on my way down their was a loud popping sound and everyone was trying to catch me. Afterwards I could not straighten my arm below my elbow.

They took me in a wheelchair and had my elbow scan, results completed torn tendon from the bone.

9- Surgey to repair torn tendon

10- Heart, was back to have the doplar ultrasound, this time they used a medication to induce heart rate. Results all Heart functions were fine, only thing seen was a small calcium build up in my aortic artery.

11-Twice I was DOA at ER arrival

Due to antibiotic allergy reaction

In the pennicilin family. I had taken pennicilin quite a few times no problems.

Luckily we were only 12 miles from Hospital, and when i could not fight it any longer and passed out my Great Wife beat me on the chest with her fist while driving.

They gave me Cpr and shots while i was lying down in the vehicle seat

Untill they got a pulse and they could get me in the hospital.

My Pcp told me after it happened the first time that he had thought about giving me a shot instead of prescribing a 250 mg pill.

He told me if he had gave me the shot I would not have made it out of his office alive.

The time I had no heartbeat or pulse was unknown both times.

I left Er both times in about 3 hours feeling fine.

9- Wife and I was bank fishing at the lake , I slip or fainted and fell on tackle box left side on my ribs and I couldnt get focused or fully awake.

Wife called 911 and other people ran over and provided shade and wet rags on my forehead.

I was alert in the Ambulance. Scans showed I had 5 seperated ribs from falling on tackle box.

Test showed I was slightly dehydrated , they gave me several Iv's.

I had dranked 3 bottles of water in the hour we were fishing , even though we were in the shade
9- Had stomach virus all the time when i was young.

Could have been from badly prepared food, from others or myself.

10- I have had the TMS procedure.

I did not sleep for 1 week, I was just not sleepy.

Did not do anything for me.

11- Was sent to have multiple mental evaluations.

12- I do have all the markers for diabetes autoimmune disease

Basically I will have Or could develope Lada diabetes.

I have had my blood sugar tested 24/7 for one year. Blood sugar has been normal the whole time.

13- Have had multiple Ct and Mri scans.
 
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