Syringomyelia Support Group
Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.
Condition: Syringomyelia (Entire spine), Arnold Chiari I Malformation, L5 and C5 bulging discs
I've noticed people have been asking about possible symptoms for both of these conditions. I've had so many that I may miss some. They affect everyone differently. Here are some of the symptoms I've experienced:
1) Chronic severe pain: Began in upper right quartile gradually spreading downward and then gradually affecting left side of body but not as severely. Variety of pain: shooting, sharp, pin prickling, burning, stabbing, sledgehammer. Can not stand for anyone to touch me.
2) Numbness and tingling in extremities
3) Sharp shooting pains in back of head
4) Sensations, tightness, pain in side of face
5) Visual disturbances
6) Burning pain in extremities, arms, and along spine
7) Hands turning purplish black when cold or walking
8) Drawing sensation followed by shaking (Maybe a tremor)
9) Pulsating, nerve twitching in legs after walking
10) No sweating under normal conditions or takes 30 minutes to break a sweat
11) No reflexes in arms and hyper-reflexes in legs
12) Spasms at night in legs
13) Insensitivity to heat and cold and sharp items which has led to injuries
14) Hoarseness and feels funny when swallowing, hurts when talking or singing
15) Headaches
16) Fatigue: This is a major symptom even when not taking meds.
17) Cold hands and feet even when core is hot
18) Legs buckle at times.
19) Off balanced at times.
20) Difficulty focusing at times
21) Difficulty adjusting to sudden temperature and pressure (wind) changes
My NS had told me that my previous surgeries (Shoulder, Partial Hysterectomy, and Bladder Tack) may have all been as a result of my condition., Thank God I'm not paralyzed and have not lost bowel/bladder function.
No breathing problems, just sinus congestion and allergies.
What is your condition and symptoms. Please make it in the form of a list. If you forget something like I've probably done, we can just add it later. Maybe, another time, we can talk about things we like to do for recreation to give people some ideas of doable activities.
I've noticed people have been asking about possible symptoms for both of these conditions. I've had so many that I may miss some. They affect everyone differently. Here are some of the symptoms I've experienced:
1) Chronic severe pain: Began in upper right quartile gradually spreading downward and then gradually affecting left side of body but not as severely. Variety of pain: shooting, sharp, pin prickling, burning, stabbing, sledgehammer. Can not stand for anyone to touch me.
2) Numbness and tingling in extremities
3) Sharp shooting pains in back of head
4) Sensations, tightness, pain in side of face
5) Visual disturbances
6) Burning pain in extremities, arms, and along spine
7) Hands turning purplish black when cold or walking
8) Drawing sensation followed by shaking (Maybe a tremor)
9) Pulsating, nerve twitching in legs after walking
10) No sweating under normal conditions or takes 30 minutes to break a sweat
11) No reflexes in arms and hyper-reflexes in legs
12) Spasms at night in legs
13) Insensitivity to heat and cold and sharp items which has led to injuries
14) Hoarseness and feels funny when swallowing, hurts when talking or singing
15) Headaches
16) Fatigue: This is a major symptom even when not taking meds.
17) Cold hands and feet even when core is hot
18) Legs buckle at times.
19) Off balanced at times.
20) Difficulty focusing at times
21) Difficulty adjusting to sudden temperature and pressure (wind) changes
My NS had told me that my previous surgeries (Shoulder, Partial Hysterectomy, and Bladder Tack) may have all been as a result of my condition., Thank God I'm not paralyzed and have not lost bowel/bladder function.
No breathing problems, just sinus congestion and allergies.
What is your condition and symptoms. Please make it in the form of a list. If you forget something like I've probably done, we can just add it later. Maybe, another time, we can talk about things we like to do for recreation to give people some ideas of doable activities.
1. Pains in my left up just under my underarm. Spreading slowly to my shoulder.
2. Pain in and under my left shoulder blade that when I sneezed felt like a ball under it.
3. Tingling numbing sensation down my arm that felt like someone was constantly passing a feather up and down my forearm to my finger tips.
4. Pain now spreading into my right side.
5. Chest pains that jump from my chest to my back to my face and would leave my chest feeling weak and my breathing off some.
6. New pain that I am feeling recently is a pain and stiffness in my lower back that made it hard for me to walk around. Pain would shoot down from my lower back or hip through my right leg and felt like my leg would give out some. Or back pain was so bad I would find myself hunched over something.
I am probably missing some but it's all that came to mind at the moment.
rrodgers, google RSD and compare symptoms.
I have had all the same symptoms you have had. Rt upper quadrant used to sweat inappropriately, now never sweats at all. Now Left upper quadrant sweats inappropriately. No reflexes in both upper and lower extremeties. Yada, yada, yada...
My doctor referred me to an endocrinologist. He said that I had Hashimoto Thyroiditis and hypothyroidism. He said that my thyroid gland had almost stopped producing the hormones. I read how it can cause a person to go into a coma. I'm very fortunate that it was discovered. I actually thought I had a sinus infection and my glands were swollen because my neck was painful. The thyroid glad is located at the base of the front of your neck. Kind of like a little crater there if not swollen.
Talk about brain cramp with hypothyroidism, it was like my brain was empty. Couldn't remember anything, not even how to get to the doc's office, though I'd driven there many times. I had my thyroid removed ( cancerous nodule) and wasn't allowed thyroid meds for 30 days afterward. They wanted to be able to detect any thyroid hormones my body was producing. It wasn't producing ANY. Boy, those were dark days. Finally, after 18 months, I had the right dosage. 200mcg Synthroid plus 10mcg Cytomel. And she didn't add the cytomel until after I told her I could look at a sudoku puzzle for hours without seeing another move, but then in the morning I could see the solution right off.
My latest TSH level was 0.02 and my PCP wanted me to tell my endo to lower my dose. Not on your life, buddy! I'm doing just fine, thank you. What my endo doesn't know won't hurt her. I swear, I was HYPER for 30 years, and nobody cared. If they would let me remain hyper for 30 years, then why would they want me to be hypo now and suffer all those HORRIBLE symptoms? Makes no sense to me.
Thanks for your help Keeska. I've been diagnosed with fibromyalgia, myofascial pain syndrome, syringomyelia, Chiari I, C4 and L5 bulging discs, hypothyroidism, allergies, and Reynaud's Phenomena. I've also had a bladder tack, DNC, partial hysterectomy, shoulder surgery for a detached labrum, appendectomy, and decompression surgery. I've also been in a couple of wrecks, one that buckled the frame of the car. I'm also beginning to get arthritis in my hand which I hope is not rheumatoid like my dear sister. I think that's it. I was also born breach. In other words, who knows what caused what?