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.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

lineage | @lineage | Aug 31, 2020

In reply to @jenniferhunter "@lineage In response to your questions... epidural spine injections are done outside the dura. They are..." + (show)

@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.

rivergirl8243 | @rivergirl8243 | Aug 31, 2020

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

kengroninga | @kengroninga | Aug 31, 2020

In reply to @rivergirl8243 "under undiagnosed rare problems" + (show)

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

Ken

John, Volunteer Mentor | @johnbishop | Aug 31, 2020

In reply to @kengroninga "I want to know if Mayo Clinic does platelet rich plasma injections? Ken" + (show)

@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

kengroninga | @kengroninga | Aug 31, 2020

I would like to see the article from this past March on PRP injections. Does May Clinic do these injections at this time?

Ken Groninga

John, Volunteer Mentor | @johnbishop | Aug 31, 2020

In reply to @kengroninga "I would like to see the article from this past March on PRP injections. Does May..." + (show)

The article was in the link of the previous post.

undiagnosed2013 | @undiagnosed2013 | Mar 20, 2021

Desperate and undiagnosed

Back in Oct 2013 I started experiencing muscle twitching in my left leg. This went on for a few weeks until I went to my Dr. From there the journey began getting Mari's of the back, brain, along with all kinds of blood work and EMG's. All came back normal. My muscles started to atrophy. I researched everything that could have caused this. Even genetics and tests for Amyloidosis. Everything normal.

When you know there's something wrong and you start to see yourself lose muscle mass for no reason at all, you cannot accept an answer of - everything is fine, just go on with your life.

I had a muscle biopsy done that did show mild and chronic denervation, but no one could determine why. I know have brain fog and difficulty with some pronunciation. I went to Mayo in Jacksonville FL and in Minnesota trying to get a workup that would show something. I have not been successful. No one can figure anything out. I applied for the undiagnosed disease network, but as you can imaging, was declined. I have not given up, but feel as though everyone is missing something that when found out will almost be like a no brained for the smart Docs at Mayo.

I did purchase some medicine over the internet prior to my symptoms and feel as though I may have ingested poison. I still have a few tablets that I kept, just in case I can ever get someone at the Mayo lab to look at. Who knows, mayne I'll get lucky. If they do find out it's poison, then maybe I can start some sort of chelation treatment.

I guess I am reaching out here in hope that maybe someone else has experienced muscle weakness and atrophy, had a clear EMG'S, and maybe got there condition figured out and treated. Please Mayo. Help me!

Erika | @erikas | Mar 20, 2021

In reply to @undiagnosed2013 "Desperate and undiagnosed Back in Oct 2013 I started experiencing muscle twitching in my left leg...." + (show)

@undiagnosed2013 Welcome to Mayo Clinic Connect, a place to give and get support.

It sounds like you are seeking proper medical care with no answers yet. Having muscle atrophy with no known cause must be terrifying.

You'll notice that I moved your question to a previous discussion. I did this so you could connect with members like @kengroninga @rivergirl8243 @bustrbrwn22 @lineage @jenniferhunter @jakedduck1 @wisco50 that have discussed this topic before.

May I ask if you have any next steps planned?

undiagnosed2013 | @undiagnosed2013 | Mar 20, 2021

In reply to @erikas "@undiagnosed2013 Welcome to Mayo Clinic Connect, a place to give and get support. It sounds like..." + (show)

No, since I really don't know who to turn to. I have already been to Mayo, and I just not sure where to go? I loved the Mayo experience, but I was pushed to a Neuro workup, which seems like a no brainer, but I have maintained that the issue is related but not directly to Neuro. I asked if I could find out, even pay for, if the lab could examine the pills I bought over the internet to see if I was poisoned, but was told that no one knew of anyone at Mayo to do that. So, I am trying to just do the best I can. But, it's heartbreaking to know that if I were a VIP, that that would have been done.

oldkarl | @oldkarl | Mar 20, 2021

In reply to @undiagnosed2013 "Desperate and undiagnosed Back in Oct 2013 I started experiencing muscle twitching in my left leg...." + (show)

@undiagnosed2013 Seems to me that you, like me and millions of others around the world, especially in the USA, are a victim of a long-lived form of hatefulness, that of "If I cannot diagnose your problem, you do not deserve to live." I have lost two careers, nearly my sanity, and nearly my family as a result of this cycle of hatred. Now, I don't have an easy answer for you, but when my legs started twitching like that, and then turned black around the lower calf to the ankle, I was in real pain. Mine turned out to be Gelsolin, a form of Amyloidosis. But I had already started treating my burning facial purpura with Gold Bond Psoriasis Relief Cream with Aspirin, and with Noxema, trading off every few hours. It has worked like a charm. So I thought, "What the Heck can I lose?" So I started treating my legs with that, as well. Now my legs no longer hurt and twitch, but they still have the black-purple bands of purpura around them, from the calves to the ankles. And I still get the purpura on my toes and around my eyes, and the rest of the symptoms are still there. Now, if I were in your shoes, I would go to the human phenotype ontology (www.hpo.org/ and enter your best guess or our symptoms, and see what they come up with. And ask your doc to do the same with https://www.omim.org/entry/ and put in something like "twitching leg" or such. Then follow the trail. Or, have a good genecist help you find the problem. There are many such sights, but a start with some place like Ambry or Sequencing, or Nebula would be helpful. Sad that you will have to take control for yourself in this matter, but it will be worth it just to know how to do things like this. Slowly but surely, we will move modern medical practice to the 21st century.