Undiagnosed rare problems.

Posted by lineage @lineage, Aug 28, 2020

I have an issue that started back in March 2020. I will try to be as detailed as possible but some information may have nothing to do with my symptoms. At this point I do not know what is or is not important information as I have repeated my story to over 15 health care professionals to include urologists, neurologists, neurosurgeons, pain specialists, pelvic specialists etc with no diagnosis.

I am a spinal pain patient with a fusion of S1 through L4. I have been this way since 2006. I have been under pain management since then and up until March was only on 5mg Methadone every 6 hours and doing well.

In March I had a selective nerve root injection on my left side S1/L5. 2 days after I started having slight pain symptoms on the right side of my penis. I saw my PCM 4 days later who ran a STI and UTI test, all negative. Started on bactrim just to be safe. 3 days later the pain shot through the roof to a 10 out of 10. I had never felt pain like this before.

Went to 1st ER and was pretty much turned away after they checked for bladder obstruction. Immediately went to 2nd ER where they ran a bunch of tests. CT scan, UTI/STI test, blood work etc. All came back normal. Was given IV antibiotics, morphine and toredol. Nothing worked. They gave a diagnosis of urethritis. Went home then 6 hours later went back to ER. Pain had not subsided at all. Could not eat, sleep… this was pure torture.

The pain was on my right side penis in the corpus cavernosum right where the glans meets the shaft about the diameter of a quarter. It was cutting, stabbing pain that radiated out a bit. It was constant no matter what I did, nsaids, methadone, heat, cold, rest… nothing could alleviate the pain. I was also now urinating ever 30 minutes to an hour about 3 to 4 ounces. No pain anywhere else. No burning in urethra or pain in urethra.

Third ER just shot me with morphine again and reffered me to urology. They also put me on doxycycline. This was a Sunday so I had to wait till monday to see urology. Even with this amount of pain they did not call the on-call urologist. Morphine, once again, did nothing.

Next day urology emergency visit. He did an exam of the genitals and surrounding area to include prostate. He could not find anything wrong. Once again did a UTI/STI test… once again negative. No diagnosis and was told this is neurological. Reffered to neurosurgery (not sure why).

Following week saw neurosurgeon who verified the symptoms are neurological in nature but again stated he had never seen anything like this before. By the time I saw him symptoms changed. Pain was now in right penis still but also right side bladder, right inguinal crease, right foot. Bladder was very pin pointed pain only in one area. Inguinal crease was very sore and radiated. Right foot was only in my big toe and was stabbing pain intermittently. Before all this I had never had symptoms on right side. Neurosurgeon ordered MRI of lumbosacral.

While all this was occurring I went back to my pain management doctor. He stated the injection could have possibly caused this but it would be a 1st for him as he had never seen this before. He ordered an MRI of lumbar spine.

Both MRIs showed everything as normal. Only thing noted was a small cyst on left side S1 L5 near the nerve root but with no impingement.

Neurosurgeon was at a loss so he sent me to neurology. Neurologist did a neurological assessment and stated my reflexes of arms and legs were extremely exaggerated. He also did a test on the bottom og my right foot that cause my toe to go straight up ( forget the name of this test). He stated these were all signs of spinal cord impingement and ordered a cervical MRI. He also stated in his 25 years he has only seen something similar to this once. A man had one sided numbness (but no pain) of penis and right foot. Turned out to be cervical cord impingement.

MRI showed minor to moderate compression at C3 C4 C5. Neurologist sends me back to neurosurgeon with no other testing. Believes compression is root of all my problems. Worth noting I have no neck pain or symptoms in upper body e.g. arm pain, tingling etc. aside from reflexes exaggerated.

1st neurosurgeon replaced with 2nd neurosurgeon who is more adept at cervical issues. New neurosurgeon believes surgery could be good but also does not believe cervical issues has nothing to do with my pelvic and foot symptoms. No further testing and decides to send me to a neurosurgeon at MUSC Charleston.

MUSC neurosurgeon Immediately stated he could not understand why I was sent to him. He has no knowledge or training in my symptoms. Stated he could not help. Not even a guess as to what was occurring. He did state he could do cervical surgery but does not believe this has anything to do with my symptoms. Sent away with no real answers.

Spoke to 2nd neurosurgeon and Neurologist, both said they are at a loss.

Spoke to PCM about pelvic dysfunction specialist, reffered to pelvic specialist/physical therapist.

Pelvic specialist poked, prodded, bent etc and could not replicate the symptoms. Does not believe this to be pudendal neuralgia. She has never seen this before.

This is where I am now. I did not add in any doctors I saw that had no answers as nothing they did or said would help with my story.

The very first ER visits I was given so many antibiotics and Nsaids it caused tremendous pain in my stomach. This led to yet another ER visit for intense stomach pain and burning. Once again this pain was at a level I had not experienced before. ER did scans and found something that concerned them near my appendix. Called specialist in who tested me for appendicitis. This led to a colonoscopy which turned out to be nothing. Everything looked healthy. I have been recovering from this stomach pain ever since.

This whole ordeal has been a nightmare. After months of doctors and specialist I do not know what this is. We know a few things it is not which is good but it is hard to believe what I have is so rare that nobody can put a name to it which means no treatment. I know this story is long but I hope somebody can help me. I would not wish this on anyone. I feel as though most of these doctors did not truly do their due diligence and just passed me off as soon as they could.

To this point I am still only on methadone. Pain medication doesn’t help with this pain so no point in asking for or taking anything else. Tried lyrica and it did not do anything. Gabapentin causes myoclonic jerks in my legs.

At this point the penis pain is intermittent and usually does not exceed a 3 of 10. The right side bladder pain is minimal but still there. I still urinate frequently. Right foot still has burning pains on all the toes on top. Inguinal crease still is sore and feels tight all the time.
Strangely enough there are times when I am laying down and I put pressure on my sacrum area and it can cause the pain symptoms to elevate. If I get up it often will go back down.

These minimal symptoms are very new though. Past 2 weeks. It has taken months of constant elevated symptoms to get to this point. I have researched so much and can not find anything that can put a name to what I am experiencing.

@wisco50

“Lineage”, As I was reading your letter and then Jennifer’s response, I was wondering if any pain intervention doctor OR neurosurgeon had suggested that you try selective nerve root blocks at the levels of compression in your cervical spine? That can be done by one of those specialties or maybe even an interventional radiologist. They may only do one level at a time so they can find out what works/doesn’t work instead of doing multiple levels at once – the latter muddles the picture. More travel and pokes for you, but it is important to clarify the situation. I had both my neck and back done when I was being diagnosed. I’ve had both neck and back fusions and was a RN x 43 years, so speaking from multiple aspects of viewpoint!
Another thought is you could get an opinion on whether one of MD types I mentioned would consider trying this on you – at this point – by looking at your scans and chart online. Then maybe if you traveled to get one, you would know ahead of time why you were going back instead of feeling like wandering in circles. It is VERY frustrating to not get clear answers. As was said, you really have to be your own advocate these days! Not fun when you are already under the weather, but an evil necessity from my patient perspective!

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Most of the neurosurgeon and Neurologist are at a loss as to what should or could be done next. It feels like they gave up before they started.

The doctor who has stuck with me the most has been my pain management doctor. He has tried to guid me as much as he can. He even gave me a steroid injection for my genitofemoral nerves to try to help with some of the pain. It did help with the inguinal areas and mons pubis areas but did nothing for the penis and foot.

I think all of the doctors Ive seen are out of their depth with my symptoms. I dont know if its due to the rarity, complexity or some other reason but theyve all run out of ideas. Every single one has stated theyve never seen symptoms like mine and I am not presenting normally by any means.

I really hope I dont have something so rare it cluld be named after me heh… kidding aside I need to keep looking for someone who will actually care about resolving this… so far Ive had no luck.

From what I understand a nerve root block would only help if I had symptoms in my neck or arms. This type of compression is inside of the spine so it would need to be an injection inside the spinal canal. Im still nkt 100% convinced my cervical compression is causing all this and injections inside the canal can be very risky. I could be wrong though… I just wish I could find a doctor who could confidently guide me.

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@lineage

Most of the neurosurgeon and Neurologist are at a loss as to what should or could be done next. It feels like they gave up before they started.

The doctor who has stuck with me the most has been my pain management doctor. He has tried to guid me as much as he can. He even gave me a steroid injection for my genitofemoral nerves to try to help with some of the pain. It did help with the inguinal areas and mons pubis areas but did nothing for the penis and foot.

I think all of the doctors Ive seen are out of their depth with my symptoms. I dont know if its due to the rarity, complexity or some other reason but theyve all run out of ideas. Every single one has stated theyve never seen symptoms like mine and I am not presenting normally by any means.

I really hope I dont have something so rare it cluld be named after me heh… kidding aside I need to keep looking for someone who will actually care about resolving this… so far Ive had no luck.

From what I understand a nerve root block would only help if I had symptoms in my neck or arms. This type of compression is inside of the spine so it would need to be an injection inside the spinal canal. Im still nkt 100% convinced my cervical compression is causing all this and injections inside the canal can be very risky. I could be wrong though… I just wish I could find a doctor who could confidently guide me.

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IF the symptoms are caused by cervical spine compression (which can effect more than neck and arms), the cervical nerve root block would essentially be used as a diagnostic test. If the symptoms disappeared, then that selective root block would say that is the level causing the symptoms. If any doubt, it could be repeated to clarify. They usually use a longer acting local anesthetic (usually bupivicaine X%) and sometimes a steroid. The bupivicaine may last 24-72 hours, depending on if it has something in there to prolong the effect. The steroid, IF used, is to calm down inflamed nerve roots and see if it gives relief, from days to months. If the latter, it may be used instead of surgery about every 3 months. If only the bupivicaine works, they know repeating every 3 months will NOT help, but at least they know which disc(s) are the problem. Does this make more sense? IOW, it is essentially used to rule things in or out. P.S. you may never be able to know for sure if your prior injection caused a problem. Frustrating but…

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@lineage

Most of the neurosurgeon and Neurologist are at a loss as to what should or could be done next. It feels like they gave up before they started.

The doctor who has stuck with me the most has been my pain management doctor. He has tried to guid me as much as he can. He even gave me a steroid injection for my genitofemoral nerves to try to help with some of the pain. It did help with the inguinal areas and mons pubis areas but did nothing for the penis and foot.

I think all of the doctors Ive seen are out of their depth with my symptoms. I dont know if its due to the rarity, complexity or some other reason but theyve all run out of ideas. Every single one has stated theyve never seen symptoms like mine and I am not presenting normally by any means.

I really hope I dont have something so rare it cluld be named after me heh… kidding aside I need to keep looking for someone who will actually care about resolving this… so far Ive had no luck.

From what I understand a nerve root block would only help if I had symptoms in my neck or arms. This type of compression is inside of the spine so it would need to be an injection inside the spinal canal. Im still nkt 100% convinced my cervical compression is causing all this and injections inside the canal can be very risky. I could be wrong though… I just wish I could find a doctor who could confidently guide me.

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I have also visited with several MDs: neurologist, neurosurgeons, orthopedic, Ent and primary care plus Mayo did every test possible without results as to what my problem might be. I was told by neurosurgeons that I needed cervical spine/myelopathy surgery but to get a second option, that was the reason I went me to Mayo, where I was told i didn't need surgery. My symptoms are my left hip hurts if I lay on it at night. My balance is off, I've fallen 3 times, no broken bones yet only bruises, my weight is 131, so I'm not overweight. I'm not in pain except when getting out of bed. My balance is off when turning around or backing up. I have headaches a lot. I move slow and I'm always tired, 3 months ago I was really active, walked 4-5 miles a day now I'm lucky if I can walk 1 mile holding Larry's hand. I found out a few months ago I have degenerative scoliosis, could this be causing my problem?

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@lineage

Most of the neurosurgeon and Neurologist are at a loss as to what should or could be done next. It feels like they gave up before they started.

The doctor who has stuck with me the most has been my pain management doctor. He has tried to guid me as much as he can. He even gave me a steroid injection for my genitofemoral nerves to try to help with some of the pain. It did help with the inguinal areas and mons pubis areas but did nothing for the penis and foot.

I think all of the doctors Ive seen are out of their depth with my symptoms. I dont know if its due to the rarity, complexity or some other reason but theyve all run out of ideas. Every single one has stated theyve never seen symptoms like mine and I am not presenting normally by any means.

I really hope I dont have something so rare it cluld be named after me heh… kidding aside I need to keep looking for someone who will actually care about resolving this… so far Ive had no luck.

From what I understand a nerve root block would only help if I had symptoms in my neck or arms. This type of compression is inside of the spine so it would need to be an injection inside the spinal canal. Im still nkt 100% convinced my cervical compression is causing all this and injections inside the canal can be very risky. I could be wrong though… I just wish I could find a doctor who could confidently guide me.

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@lineage In response to your questions… epidural spine injections are done outside the dura. They are not injected into the spinal canal. That would run a high risk of damage to the spinal cord and paralysis.

With my early symptoms, I could turn the pain on or off in my ankle by turning my head. My bone spurs were actively growing and doubled in mass in 9 months time that I could see on MRIs, and by that time, there was no fluid space at all around my spinal cord at the C5/6 level, and the disc had collapsed half of it's height. I got to a point where I could not turn off the pain anymore, but changing body position changed where the pain was felt, so when it turned off one area, another body part stepped in to complain. There was variety with numbness and tingling, and later, sharp stabbing pains or electrical pain. Those are nerve compressions. I also had overactive reflexes in my arms and legs, but later as I lost muscle to atrophy, that also faded. When I had nerve conduction and EMG testing, I didn't feel pain in the damaged areas. I did not have compression of the nerve roots, but because of the loss of height of the disc, if I side bent my neck, it touched those nerve roots and sent strong pain down my arms. I started wearing a microwaveable bead filled neck wrap and tying that with a scarf to keep my neck position straight. Bending and twisting would bring on muscle spasms of the cervical spinal muscles, and that would cause an increase in pains in my body. My C1 through C4 would get twisted independently or tilted, and this started bringing on vertigo bad enough that on one occasion, I fell backward against a door. My therapist realigned things, and I was OK again. I also have thoracic outlet syndrome which causes my neck and chest to be tight, with greater symptoms on my left side which was involved in the twisting muscle spasms. This also causes left side tightness that affects my pelvic alignment, and I work on that in physical therapy. Since my spine surgery, that has calmed down. I do still have TOS and work on that with fascial stretching. Spinal cord compression isn't necessarily predictable as to where the pain will be generated, and it can change location with the cord changes its position within the spinal canal. If you also have compression of nerve roots, those cause predictable pain that can be anywhere along the nerve path. This is diagrammed on dermatome maps where the surface of the body is mapped to the nerve roots. The spinal cord is highly mapped too, but you don't know what area will get touched by a spine problem.

I think your spine injection has caused some of your symptoms, and may improve as time goes on. It is probably similar to the problem I had caused by the injection, and that did resolve itself with a lot of improvement after 6 weeks. There probably are several things contributing to the problems. With funicular pain, it seems to be when the spinal cord in touched in 2 places at the same time that causes the referred pain. One site would be the cervical compression and the other might be related to the injection or the cyst you mentioned unless there is other spine pathology. You said they didn't find problems beyond your past surgeries. You mentioned 2 lumbar/sacral spine surgeries, and those will have created scar tissue from the surgical path in the fascia. I do myofascial release therapy with my PT to work on this. My pattern of left side tightness is a tightness in the fascial web and it also tends to pull my left pelvis forward or twist the alignment, and I have felt that tension from the connection of my neck and jaw all the way to my ankle. Sometimes the overly tight side beats up on the other side of the body because muscles work in opposition. This may be able to explain why you have pain on the opposite side of your body. It could also happen from rotation of a vertebrae changing pelvis alignment. I had that happen when my sciatic pain switched sides after my whiplash years ago. Tight fascia will pull muscles and bones out of correct alignment and function and can compress the very small spaces where nerves travel in the body. A lot of doctors don't understand MFR work and the properties of the living fascial tissue that changes between solid and semi liquid and the fascia also conducts electricity. In med school, they work on cadavers and the fascia no longer has the ability to slide and reshape itself. If you had an evaluation with an expert level MFR physical therapist, you may get some clues to where your pain is coming from in your body (and not related to the spine). I have made a lot of progress with MFR and started a discussion to collect the details and information. This may help and you won't know unless your try it. You don't always need to know the exact cause of a problem to do this. The therapist can feel the pathway of tightness with their hands. There is a provider search on the MFR website.

You might want to wait it out to see if the adverse effects of the injection wear off. Right now, it is causing confusion in locating the exact problem and pain source. If that goes away with MFR therapy and time, you can check it off the list, and it won't be a deterrent to getting a surgeon's help. You'll still have your spine condition, but that may be more straightforward for your providers to figure out. I stopped talking about having had vertigo from the twisting muscle spasms and instead just talked about the spasms and pain. I think it was the vertigo which scared surgeon #5 out of helping me because it could have a lot of causes, one of which is a cervical spine issue. The injections work by reducing inflammation in the linings around the nerves and spinal cord and they get a bit smaller. At some point, the injections stop working when there is too much compression. FYI, on an MRI, myelopathy (spinal cord damage) shows up as a whitish or mottled area inside the spinal cord. When that happens, permanent damage is happening. Mild myelopathy does not always show on an MRI, and mine did not. My surgeon told me this. Decompression surgery is more successful if done before permanent damage sets in. Your case is complex, but don't give up hope. Research doctors now so you know where to go. If you get into an emergency surgical situation, you would be assigned to whoever is on call unless you are established as a patient with a surgeon.

Here are some links about MFR, and about pelvic or back disorders caused by alignment issues. You could have that going on in addition to the spine issues.

https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/ (lots of great articles on this site)
https://www.healthline.com/health/dermatome#dermatomes-list
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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I feel the same way. See my last post

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Hi @rivergirl8243 – what was your last post? Thanks!!

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It was posted on the 30th

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@rivergirl8243

It was posted on the 30th

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under undiagnosed rare problems

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@jenniferhunter

@lineage In response to your questions… epidural spine injections are done outside the dura. They are not injected into the spinal canal. That would run a high risk of damage to the spinal cord and paralysis.

With my early symptoms, I could turn the pain on or off in my ankle by turning my head. My bone spurs were actively growing and doubled in mass in 9 months time that I could see on MRIs, and by that time, there was no fluid space at all around my spinal cord at the C5/6 level, and the disc had collapsed half of it's height. I got to a point where I could not turn off the pain anymore, but changing body position changed where the pain was felt, so when it turned off one area, another body part stepped in to complain. There was variety with numbness and tingling, and later, sharp stabbing pains or electrical pain. Those are nerve compressions. I also had overactive reflexes in my arms and legs, but later as I lost muscle to atrophy, that also faded. When I had nerve conduction and EMG testing, I didn't feel pain in the damaged areas. I did not have compression of the nerve roots, but because of the loss of height of the disc, if I side bent my neck, it touched those nerve roots and sent strong pain down my arms. I started wearing a microwaveable bead filled neck wrap and tying that with a scarf to keep my neck position straight. Bending and twisting would bring on muscle spasms of the cervical spinal muscles, and that would cause an increase in pains in my body. My C1 through C4 would get twisted independently or tilted, and this started bringing on vertigo bad enough that on one occasion, I fell backward against a door. My therapist realigned things, and I was OK again. I also have thoracic outlet syndrome which causes my neck and chest to be tight, with greater symptoms on my left side which was involved in the twisting muscle spasms. This also causes left side tightness that affects my pelvic alignment, and I work on that in physical therapy. Since my spine surgery, that has calmed down. I do still have TOS and work on that with fascial stretching. Spinal cord compression isn't necessarily predictable as to where the pain will be generated, and it can change location with the cord changes its position within the spinal canal. If you also have compression of nerve roots, those cause predictable pain that can be anywhere along the nerve path. This is diagrammed on dermatome maps where the surface of the body is mapped to the nerve roots. The spinal cord is highly mapped too, but you don't know what area will get touched by a spine problem.

I think your spine injection has caused some of your symptoms, and may improve as time goes on. It is probably similar to the problem I had caused by the injection, and that did resolve itself with a lot of improvement after 6 weeks. There probably are several things contributing to the problems. With funicular pain, it seems to be when the spinal cord in touched in 2 places at the same time that causes the referred pain. One site would be the cervical compression and the other might be related to the injection or the cyst you mentioned unless there is other spine pathology. You said they didn't find problems beyond your past surgeries. You mentioned 2 lumbar/sacral spine surgeries, and those will have created scar tissue from the surgical path in the fascia. I do myofascial release therapy with my PT to work on this. My pattern of left side tightness is a tightness in the fascial web and it also tends to pull my left pelvis forward or twist the alignment, and I have felt that tension from the connection of my neck and jaw all the way to my ankle. Sometimes the overly tight side beats up on the other side of the body because muscles work in opposition. This may be able to explain why you have pain on the opposite side of your body. It could also happen from rotation of a vertebrae changing pelvis alignment. I had that happen when my sciatic pain switched sides after my whiplash years ago. Tight fascia will pull muscles and bones out of correct alignment and function and can compress the very small spaces where nerves travel in the body. A lot of doctors don't understand MFR work and the properties of the living fascial tissue that changes between solid and semi liquid and the fascia also conducts electricity. In med school, they work on cadavers and the fascia no longer has the ability to slide and reshape itself. If you had an evaluation with an expert level MFR physical therapist, you may get some clues to where your pain is coming from in your body (and not related to the spine). I have made a lot of progress with MFR and started a discussion to collect the details and information. This may help and you won't know unless your try it. You don't always need to know the exact cause of a problem to do this. The therapist can feel the pathway of tightness with their hands. There is a provider search on the MFR website.

You might want to wait it out to see if the adverse effects of the injection wear off. Right now, it is causing confusion in locating the exact problem and pain source. If that goes away with MFR therapy and time, you can check it off the list, and it won't be a deterrent to getting a surgeon's help. You'll still have your spine condition, but that may be more straightforward for your providers to figure out. I stopped talking about having had vertigo from the twisting muscle spasms and instead just talked about the spasms and pain. I think it was the vertigo which scared surgeon #5 out of helping me because it could have a lot of causes, one of which is a cervical spine issue. The injections work by reducing inflammation in the linings around the nerves and spinal cord and they get a bit smaller. At some point, the injections stop working when there is too much compression. FYI, on an MRI, myelopathy (spinal cord damage) shows up as a whitish or mottled area inside the spinal cord. When that happens, permanent damage is happening. Mild myelopathy does not always show on an MRI, and mine did not. My surgeon told me this. Decompression surgery is more successful if done before permanent damage sets in. Your case is complex, but don't give up hope. Research doctors now so you know where to go. If you get into an emergency surgical situation, you would be assigned to whoever is on call unless you are established as a patient with a surgeon.

Here are some links about MFR, and about pelvic or back disorders caused by alignment issues. You could have that going on in addition to the spine issues.

https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/ (lots of great articles on this site)
https://www.healthline.com/health/dermatome#dermatomes-list
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@jenniferhunter

I want to thank you again for all the information youve shared.

When all this started in March and the ER visits went poorly I thought to myself that once I got an answer I would share my story and try to help others. Has not turned out that way yet.

I am thankful for people like you who choose to help others. Youve shared a wealth of knowledge and I will go through all of it in hopes I may find help there.

I hope your health continues to make positive strides.

To everyone else, thank you for your input and help as well. It can bd difficult finding people who are willing to help a stranger, I am thankful for all of you.

If I find an answer I will share. Thanks all and please be safe out there.

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if I find an answer I will also share. Thank you and good luck

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@rivergirl8243

under undiagnosed rare problems

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I want to know if Mayo Clinic does platelet rich plasma injections?

Ken

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@kengroninga

I want to know if Mayo Clinic does platelet rich plasma injections?

Ken

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@kengroninga There is an article from this past March that discusses PRP (platelet rich plasma) injections.

Navigating the hope and hype of regenerative medicine: https://www.mayoclinic.org/medical-professionals/orthopedic-surgery/news/navigating-the-hope-and-hype-of-regenerative-medicine/mac-20482553

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