Progressive symptoms, need advice please.

Posted by tennis123 @tennis123, Jun 10, 2023

Hi, I am a young adult in my 20s. I have had symptoms that seem to be progressing, and I am very scared. For the past year I have had worsening heat intolerance with hyperhydrosis on my face. My doctor initially thought it was stress. I accepted that possibility initially but it was happening at times when I was completely calm at home. I then started developing waxing and waning pain in my back, the worst in my lumbar spine with paresthesias over the area and tingling in my pelvis. I began to have the sensation that I was urinating on myself when I wasn't and I've been experiencing urinary urgency. Since these symptoms began, I have had an abdominal CT w/ contrast that was negative. I have also had an MRI of my brain and entire spine without contrast which was pretty much completely normal other than a small disk bulge in my cervical spine. My last MRI was of the lumbar spine about 2 months ago. After I had the imaging, the symptoms got much, much worse. I began having spasms in my pelvis and perineal area and was unable to have a bowel movement for about a week and my back hurt so badly I couldn't sit down. I had an episode where I became extremely, extremely fatigued for about 2 weeks recently and felt like I could barely lift my head. When walking my right foot would drag on the ground every once in a while. When I sit down now, I get vibrating in my lower back and down both legs and all my leg muscles are fasiculating and spasming and I still have all the symptoms previously mentioned such as extreme hyperhydrosis and back pain. When I get nervous, my symptoms do worsen and my legs shake and almost give out. I have wanted to go to the emergency room but I didn't because I didn't want the staff to be condescending about it. I've had lots of lab tests, such as a basic autoimmune workup which was negative and I've had acute phase reactants tested multiple times since it started about a year ago, which are always normal. I have an appointment with a neurologist coming up but it's taken so long to get in and everything has been progressing. Does anyone have any advice? I'm so scared because everything has been normal and I have no answers.

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

I'm glad you have an appointment with a neurologist coming up. In preparation for it, you may wish to try to log your symptoms in terms of when they emerged and, if applicable, faded and re-emerged. I noticed that at least 3 of your symptoms are consistent with a misfiring autonomic nervous system (ANS), which comprises the sympathetic nervous system (SNS) and parasympathetic nervous system (PNS). The SNS controls sweating, urinary urgency, and lack of bowel motility. Do an online search of these and other symptoms relative to the ANS, SNS and PNS to help you prepare the log.

I hope this helps, and I wish you the best of luck. Above all, if you don't mind my saying, keep that appointment with the neurologist!

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I don't have any medical advice but some practical tips. Write down all you r questions for the doctor and bring someone in with you for the appointment. It's always better to have two people listening to the doctor and perhaps a small note book. Write down all the details, date, doctor's name, questions and then leave a space for his answers. Also try to write down a clear, concise list of your troubles and again any answers the doctor may have. Also the names of any tests and their results as well as any medications. You'll more out of the visit when you carefully prepare for it...good luck.

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Tennis123 as others say
1 keep up with all tests
2 ask questions write down answers .
3 . Sounds to me like Hormone your 20ish something these hormones will continue for the next few years for females and males until 27 to 28 and the rib cage bones will finally harden and will be we have a lot going on when young lots of things going on hang in there

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I know the nervous system can do lots of different things I’d say try and keep yourself hydrated good
just watch your progress when you do something differently write it down see what helps and what don’t .. I know I was off quite a bit when you worry can cause more things to go on you’ll have to figure out what works for you what ever that might be to get your mind in the right place but what ever it is stay on top of it and try and stay calm in the process that’s easier said then done . I literally quit watching the news 3 years ago and turned off all things ( negative) that’s happening in the world today that alone helped tremendously as there is so much going on daily unbelievable stuff that would make a preacher cuss …. hang in there we our living in some real jacked up times right now wish you the best in your journey of health and happiness god bless 🙏🏻

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@tennis123
Hello. I’ve been through a lot last 3 years with many symptoms and condescending doctors. Write down everything including doctors you see and take someone with you to appointments if you can. I had flushing hot face also. I was anemic. Have you had iron blood tests? Also, check for UTI? And I find that vitamins are important.
Keep persevering and keep us informed if you’d like.

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I'm having severe pain from my neck all the way down my spine, my ears are flushed, and I keep breaking out into sweats 🙁

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@tennis123 The symptoms you are describing with your pelvis sound like the pelvic alignment may be off and causing nerves to be pinched. My pelvis has been able to shift, and on one occasion and cause some vibration feelings on half of my groin and I think that is from the Pundental nerve. It was easily correctly by physical therapy. I have been working with a physical therapist and sometimes my ilium bones are inflared which causes irritation to the colon that sits in front of it and that can cause constipation and pain in the GI tract. If the hip flexors are too tight, it can cause this by pulling the illium forward and inward or they could twist up and downward. When I feel this coming on, I stretch with a lunge type stretch to stretch a leg backward as mush as I can, and do this while I have a tennis size ball under it putting pressure on the tight muscle to stretch it. Sometimes I do this against an open door frame while standing. It hurts to do that, but it opens up the constriction. I also do a stretch my physical therapist showed me on resetting the pelvis that involves opening my thighs against resistance, and then squeezing my thighs together against resistance, and sometimes I feel it click into place and it may or may not make a clicking sound.. The pelvis has 3 bones on each side and is jointed, and sometimes it can kind of twist out of alignment. When that happens, I get pain one one side of my lower back or sciatic pain down my leg. The tailbone can even be pulled out of alignment.

These types of problems cause symptoms similar to spine problems. The muscles connecting the pelvis to the spine can be at fault by being too tight and putting a lot of pressure on the spine.

This article explains why this can happen and it's called Lumbar Plexus Compression Syndrome because it involves nerve roots of nerves going to the legs.

"How to identify and treat lumbar plexus compression syndrome (LPCS)"
https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

I know this article is very technical and discusses how muscles and nerves intertwine. From what you said, it sounds like you are very tight through the pelvis and lumbar spine as you said sitting down causes a lot of pain. Have you been evaluated by a physical therapist? I think that really could help you particularly if you find a PT who also does myofascial release. The fascia has to glide to allow the body to move, and it you are stuck, it will just increase pressure on other things instead of gliding as it should.

You may want to look at our discussion on Myofascial Release.
-Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I have done a lot of this MFR work and it really helps me. It gets the body moving and aligned as it should be and releases tight stuck dehydrated tissue. You don't need a specific diagnosis to do this, probably just a script from any doctor about working on pain and the structural weakness that is causing it. You can search for a provider at http://mfrtherapists.com/

It sounds like you have ruled out a lot of other structural issues. How is your posture? That can lead to getting stuck if you are always in the same position, have bad slouching posture, or may be sitting too long and too much of the time. Walking is great to maintain pelvis alignment and strength and so is horse back riding at a walk which builds core strength to maintain and strengthen the spine pelvic alignment. I have a horse and this helps me. I am a cervical spine surgery patient with a fused C5/C6 and building core strength from below gives me a strong foundation to support all of my spine and head on the column of vertebrae.

Are you involved in any sports that could have led to this issue of tightness? Is it a lack of exercise or lack of regular movement causing this? Are you sitting too much engaging in online activities that affect your posture?

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Thank you for your message! I do have terrible posture and I am working on correcting it. I do mild exercise and should exercise more. I don't play any sports or anything like that.

I'm becoming very concerned because I'm starting to experience visible vibrating/shaking now that worsens when I get anxious but is present even when I'm completely calm.

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@jenniferhunter

@tennis123 The symptoms you are describing with your pelvis sound like the pelvic alignment may be off and causing nerves to be pinched. My pelvis has been able to shift, and on one occasion and cause some vibration feelings on half of my groin and I think that is from the Pundental nerve. It was easily correctly by physical therapy. I have been working with a physical therapist and sometimes my ilium bones are inflared which causes irritation to the colon that sits in front of it and that can cause constipation and pain in the GI tract. If the hip flexors are too tight, it can cause this by pulling the illium forward and inward or they could twist up and downward. When I feel this coming on, I stretch with a lunge type stretch to stretch a leg backward as mush as I can, and do this while I have a tennis size ball under it putting pressure on the tight muscle to stretch it. Sometimes I do this against an open door frame while standing. It hurts to do that, but it opens up the constriction. I also do a stretch my physical therapist showed me on resetting the pelvis that involves opening my thighs against resistance, and then squeezing my thighs together against resistance, and sometimes I feel it click into place and it may or may not make a clicking sound.. The pelvis has 3 bones on each side and is jointed, and sometimes it can kind of twist out of alignment. When that happens, I get pain one one side of my lower back or sciatic pain down my leg. The tailbone can even be pulled out of alignment.

These types of problems cause symptoms similar to spine problems. The muscles connecting the pelvis to the spine can be at fault by being too tight and putting a lot of pressure on the spine.

This article explains why this can happen and it's called Lumbar Plexus Compression Syndrome because it involves nerve roots of nerves going to the legs.

"How to identify and treat lumbar plexus compression syndrome (LPCS)"
https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

I know this article is very technical and discusses how muscles and nerves intertwine. From what you said, it sounds like you are very tight through the pelvis and lumbar spine as you said sitting down causes a lot of pain. Have you been evaluated by a physical therapist? I think that really could help you particularly if you find a PT who also does myofascial release. The fascia has to glide to allow the body to move, and it you are stuck, it will just increase pressure on other things instead of gliding as it should.

You may want to look at our discussion on Myofascial Release.
-Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I have done a lot of this MFR work and it really helps me. It gets the body moving and aligned as it should be and releases tight stuck dehydrated tissue. You don't need a specific diagnosis to do this, probably just a script from any doctor about working on pain and the structural weakness that is causing it. You can search for a provider at http://mfrtherapists.com/

It sounds like you have ruled out a lot of other structural issues. How is your posture? That can lead to getting stuck if you are always in the same position, have bad slouching posture, or may be sitting too long and too much of the time. Walking is great to maintain pelvis alignment and strength and so is horse back riding at a walk which builds core strength to maintain and strengthen the spine pelvic alignment. I have a horse and this helps me. I am a cervical spine surgery patient with a fused C5/C6 and building core strength from below gives me a strong foundation to support all of my spine and head on the column of vertebrae.

Are you involved in any sports that could have led to this issue of tightness? Is it a lack of exercise or lack of regular movement causing this? Are you sitting too much engaging in online activities that affect your posture?

Jump to this post

i noticed if your more sensitized to pain you feel it more

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@tennis123

Thank you for your message! I do have terrible posture and I am working on correcting it. I do mild exercise and should exercise more. I don't play any sports or anything like that.

I'm becoming very concerned because I'm starting to experience visible vibrating/shaking now that worsens when I get anxious but is present even when I'm completely calm.

Jump to this post

@tennis123 Physical therapists can do a lot of good, but you have to commit to following through to correct the bad habits. Bad posture puts extra pressure on the spine and with aging, the discs in the spine tend to dry out and sometimes weaken. The spine can grow extra bone when there is uneven pressure which can form bone spurs and bad slouching posture will put uneven pressure on a disc. I had a whiplash injury that eventually lead to spine surgery, so I try to be good about posture to keep my spine healthy. We can't stop aging, but the choices we make do affect how well our bodies function.

You are experiencing some pressure on nerves. I think a physical therapist can help and teach you good habits and best ways to strengthen to prevent this type of problem.

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