Aa
pressure/numbness in head over 5 months now
Just diagnosed w/limited scleroderma (centromere patt) ana one dilution over 640/2200 something. areas affected most are calves/scarred-red hard and severe spinal, and joint, nerve, muscle pain, stiffness. Can only lay down no more than 2 hrs a night from pain/stiffness/spinal cord pain. Takes 1/2 hr after pain meds and muscle relaxer to move out of the bed. I can not move my trunk or head/shoulders on wakening at all, my husband lifts head & gives them to me. I get so little sleep, often I cat nap sitting up. Sometimes my head goes off to the right side. Last yr I noticed pressure/numbness upon waking up like this. It would last for a few days and go away, but now it does not go away at all. Have a constant numbness/pressure top of scalp, area inc/dec slightly day to day. Ear/eye pressure & difficulty moving eyes especially up and to sides. Also developed a nike swoosh arch/shooting star thing over my right eye when I look from down to up, which started when this got worse. Some days it goes past my eyes, & over my ears like a vice mostly without headache or slight/medium headache. This week into my right cheek. Always feels like someone stuffed a towel inside of my head at the top and sewed it in. Had brain mri, mra w/contrast cat & craneal doppler showed high velocity of blood flow but no one knows why. Have had inc in BP. Every now and then It feels like a smaller towel, but never goes away and worse if more cat nap. Dr says doppler would show neck blockage but i suggested it was not done in cat nap position/dr says it would still show up. suggestions?
The anti-centromere pattern is fairly suggestive of either the limited form of scleroderma or systemic sclerosis, depending on what symptoms and extent of involvement you have
The most common neurological presentations in scleroderma involve the peripheral nerves - peripheral neuropathy, trigeminal neuropathy, or myalgias (muscle pain).
I cannot comment on treatment of the scleroderma as this is in the realm of the Rheumatologist
It also seems like you have a form of chronic daily headache, which may be caused by what is termed "central sensitization", a recent concept where, due to abnormal inputs to the brain
(ie from damaged nerves from scleroderma), the brain's 'sensation' of pain or touch is abnormally heightened. Another common cause of chronic headache is overuse of pain medications (even ones like NSAIDS and acetaminophen) - I do not know if this is the case with you. In any case, your local neurologist should be able to suggest some treaments (usually involving limiting pain medications and using a tricyclic antidepressant (also works for pain/central pain abnormalities).
At the Cleveland Clinic Headache Center, we have developed a novel method for measuring "Central Sensitization".
A doppler ultrasound of the neck will show a fixed blockage of an artery, however in some situations the position of the neck (usually to the side) in older people with cervical osteoarthritis can cause a transient compression of a vertebral artery in the back of the neck.
It would be quite unusual for scleroderma to narrow the arteries of the nervous system and cause increased flow
PW
The most common neurological presentations in scleroderma involve the peripheral nerves - peripheral neuropathy, trigeminal neuropathy, or myalgias (muscle pain).
I cannot comment on treatment of the scleroderma as this is in the realm of the Rheumatologist
It also seems like you have a form of chronic daily headache, which may be caused by what is termed "central sensitization", a recent concept where, due to abnormal inputs to the brain
(ie from damaged nerves from scleroderma), the brain's 'sensation' of pain or touch is abnormally heightened. Another common cause of chronic headache is overuse of pain medications (even ones like NSAIDS and acetaminophen) - I do not know if this is the case with you. In any case, your local neurologist should be able to suggest some treaments (usually involving limiting pain medications and using a tricyclic antidepressant (also works for pain/central pain abnormalities).
At the Cleveland Clinic Headache Center, we have developed a novel method for measuring "Central Sensitization".
A doppler ultrasound of the neck will show a fixed blockage of an artery, however in some situations the position of the neck (usually to the side) in older people with cervical osteoarthritis can cause a transient compression of a vertebral artery in the back of the neck.
It would be quite unusual for scleroderma to narrow the arteries of the nervous system and cause increased flow
PW
I am truly sorry for your suffering. God has allowed it, however, so that means since say you know Him, somehow it is for your benefit and His glory. And to be able to be used by God for anything is an honor. I know things seem hopeless at times, but remember that this life is only temporary, and eternity lasts a long, long time.
What sort of tests or things can they do for you? Or to you ;-) It is truly amazing how far doctors and technology have come. They really can to wonderful things and are often very good at being "detectives". But as you know its especially hard to deal with when they don't know whats going on... You seem pretty thorough, but have you examined any alternative means? If for no other reason than for another opinion. I know it gets tiresome but God often uses doctors to do His work, even without them knowing it, if needs be. Keep knocking, keep seeking, and don't give up. There may not be a "cure-all" for everything, but any improvement would be good news.
How is your husband holding up? Fishing always helps me :-) I will pray for him as well...
sidm
What sort of tests or things can they do for you? Or to you ;-) It is truly amazing how far doctors and technology have come. They really can to wonderful things and are often very good at being "detectives". But as you know its especially hard to deal with when they don't know whats going on... You seem pretty thorough, but have you examined any alternative means? If for no other reason than for another opinion. I know it gets tiresome but God often uses doctors to do His work, even without them knowing it, if needs be. Keep knocking, keep seeking, and don't give up. There may not be a "cure-all" for everything, but any improvement would be good news.
How is your husband holding up? Fishing always helps me :-) I will pray for him as well...
sidm
Try seeing a chiropractor who specializes in UPPER CERVICAL SPECIFIC CHIROPRACTIC. I know it sounds like there is no way, but it may help. I had similar problems and it made a huge difference. See comment a couple of posts below yours. Or visit a site like www.erinelster.com/upper_cervical_care.html
There are a few different techniques to realign your atlas (source of MANY ailments) but the theory behind it is the same. Regular popping and such that normal chiropractors do, did not help me at all, but this did the trick. It ahs amazed me how much it has helped. I will pray for you ma'am.
There are a few different techniques to realign your atlas (source of MANY ailments) but the theory behind it is the same. Regular popping and such that normal chiropractors do, did not help me at all, but this did the trick. It ahs amazed me how much it has helped. I will pray for you ma'am.
Sidm,
Thanks for your comments. Not a good candidate for chiropractic. I have been sick some time now, since 1986, and my spine/ribs are in so much pain that I had to have demerol injections just to be able to lay down for the cat scan and the mri's, doppler.
In 94 I was down to 100 lbs, and could barely breathe or move. As a last resort, my doctor put me in daily warm water hydrotherapy, which literally saved my life. I went two years outpatient every day and to the Y on weekends. Insurance bought me an indoor pool and lift in 96, and I have been doing daily or every other day therapy since then depending on the day. Cuts the lymphedema, and helps me fight to move my body. Allows me to be upright for a couple of hours a day with the lower gravity. (I have been in a wheelchair for 12 years from peripheral neruopathy which is severe in my feet) I still move very slow, but I do get to move with its help and try to keep as much flexibility as I can. I am still on pain meds 24/7 and without the pain meds, I would never be able to do it.
I just wish this thing with my head would get better,and I am hoping the doctors here have heard of my symptoms with someone else or suggest something to do, tests to take. Most of the day I keep my head wet or put ice on it, just to dull the numbness/pain/pressure a bit. Feels like part of my brain is dead. I am so glad you also have found relief with the chiropractic Dr that has helped you with your pain, and it was kind of you to share it with me. Thank you for your prayers, and know that I will keep you, those seeking help here, and the doctors in mine as well. DebMarie
Thanks for your comments. Not a good candidate for chiropractic. I have been sick some time now, since 1986, and my spine/ribs are in so much pain that I had to have demerol injections just to be able to lay down for the cat scan and the mri's, doppler.
In 94 I was down to 100 lbs, and could barely breathe or move. As a last resort, my doctor put me in daily warm water hydrotherapy, which literally saved my life. I went two years outpatient every day and to the Y on weekends. Insurance bought me an indoor pool and lift in 96, and I have been doing daily or every other day therapy since then depending on the day. Cuts the lymphedema, and helps me fight to move my body. Allows me to be upright for a couple of hours a day with the lower gravity. (I have been in a wheelchair for 12 years from peripheral neruopathy which is severe in my feet) I still move very slow, but I do get to move with its help and try to keep as much flexibility as I can. I am still on pain meds 24/7 and without the pain meds, I would never be able to do it.
I just wish this thing with my head would get better,and I am hoping the doctors here have heard of my symptoms with someone else or suggest something to do, tests to take. Most of the day I keep my head wet or put ice on it, just to dull the numbness/pain/pressure a bit. Feels like part of my brain is dead. I am so glad you also have found relief with the chiropractic Dr that has helped you with your pain, and it was kind of you to share it with me. Thank you for your prayers, and know that I will keep you, those seeking help here, and the doctors in mine as well. DebMarie
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