Over the last couple of days having numbness on the rear left side of head/skull. Not sure if this is the ~20% of cases that exhibit cranial involvement?...approximately 2 years ago, had a brief episode with my right eye crossed at times, but neurologist did not comment and has not occurred since.
Curious is anyone else has had this head numbness symptom?
/Marc.
I have had a swimming head…dizzy, eyes out of focus…typical of low blood pressure…but mine is perfect. No comment from the neurologist. But he made lots of notes!!!
Been like this for about two months…less now…more infrequent.
Hi Marc,
Since I was diagnosed back in November, 2011, I've had what I used to call "cerebral spinal headaches" because it feels like some giant man has the base of his hand at the top of my spinal cord and pushing down on my brain, and it often would spread up the back of my head. They came and went, but at the beginning of 2013, they came and they stayed. Initially in 2011, doctors told me it was because of the damages to my nerves, swelling, etc. and due to that sensitive area, it is difficult for the nerves to heal. But after I couldn't stand the pain anymore, my neuro referral me to a spinal surgeon (who also had a pain mgmt. doc)-they did an MRI and found severe damage to my occipital nerves. Apparently, these nerves start at C1, C2 and C3 and spread up the back of your head and go up almost to your forehead. They started treatment with nerve blocks, epidurals, etc., and are now looking into placing an internal pain simulator...apparently this is supposed to "block" pain signals to the brain. So, long story short, possibly seek out a neurosurgeon (since they deal with the cervical spine area) and see if they can do an MRI and hear what their recommendations are. Sorry I rambled, but hopefully this helps :) Melissa
Hi Marc,
I have not had this symptom. I do not think numbness in that area involves cranial nerves. I am fairly certain (but I am not a doctor) that the cranial nerves do not innervate the back of the head, but this numbness may involve the cervical nerves. Cervical involvement is very unusual for CIDP and it may be something else entirely, including something not so scary. If it continues, you should still contact your neurologist.
Best!
Joy
Just had a thought…we all have the disease…all effected in similar ways…so why not look at life styles and compare them? What do we work at…diet…alcohol intake…cigarettes…sexual partners…how many partners…chemical exposure…stressful lives?..high unexplained temperatures…diabetic history…
Too few cases in U.K to get money for research…but U.S has many many people with this disease…and I lived there for 6 years…
AND I CANNOT SEE THIS BLOODY TYPING BECAUSE THE WEB SITE IS CRAP,
Response to Happy:
I have considered diet and lifestyle a lot. I quit smoking 2 years ago, not much of a drinker and thought I was eating healthy BUT I think there may be a connection with gluten, leaky gut syndrome and allowance of proteins to cross the barrier between the gut and your immune system and triggering the autoimmune response. I also asked for and got a referral for PT to maximize what muscle I have left in my legs. I also started a Paleo diet that eliminates everything with gluten, dairy and nuts - it's harsh - all I eat is protein (no eggs), fresh fruits and vegetables. I'll give up eggs and peanut butter and bread if I can go upstairs and get out of chairs again.
I myself have disintegrating disc disease in my neck and back which gives me a similar problem, if I were you I'd have this checked out. Gary
Thanks Happy, sounds like sometimes the neurologist just doesn't know 100%... and mine will not start any treatments until I exhibit signs of weakness...versus pain or numbness...it just worries me being the head area.
/Marc.
Happy said:
I have had a swimming head...dizzy, eyes out of focus...typical of low blood pressure..but mine is perfect. No comment from the neurologist. But he made lots of notes!!!
Been like this for about two months....less now..more infrequent.
Hi Mel,
Thanks kindly for your detailed reply. I'm not quite sure if this is the same issue that you've experienced , but nevertheless I will bring this up to my neurologist as soon as I get an appointment with him. I do not get any headaches with this numbness or in this region...but I've never had numbness before in this part of my body, and somehow I think its associated with CIDP. It's now been about 3 days but not getting better nor worse. I hope that you're feeling better and will follow up as soon as I get an answer from the neurologist.
/Marc.
Mel said:
Hi Marc,
Since I was diagnosed back in November, 2011, I've had what I used to call "cerebral spinal headaches" because it feels like some giant man has the base of his hand at the top of my spinal cord and pushing down on my brain, and it often would spread up the back of my head. They came and went, but at the beginning of 2013, they came and they stayed. Initially in 2011, doctors told me it was because of the damages to my nerves, swelling, etc. and due to that sensitive area, it is difficult for the nerves to heal. But after I couldn't stand the pain anymore, my neuro referral me to a spinal surgeon (who also had a pain mgmt. doc)-they did an MRI and found severe damage to my occipital nerves. Apparently, these nerves start at C1, C2 and C3 and spread up the back of your head and go up almost to your forehead. They started treatment with nerve blocks, epidurals, etc., and are now looking into placing an internal pain simulator...apparently this is supposed to "block" pain signals to the brain. So, long story short, possibly seek out a neurosurgeon (since they deal with the cervical spine area) and see if they can do an MRI and hear what their recommendations are. Sorry I rambled, but hopefully this helps :) Melissa
Hi Joy,
Thanks for your reply, I intend to call the neurologist next week to make an appointment and see what is causing this numbness...other than that I do not feel bad, but I've have never experienced numbness in this area consistently now for 3 days.
/Marc.
Joy said:
Hi Marc,
I have not had this symptom. I do not think numbness in that area involves cranial nerves. I am fairly certain (but I am not a doctor) that the cranial nerves do not innervate the back of the head, but this numbness may involve the cervical nerves. Cervical involvement is very unusual for CIDP and it may be something else entirely, including something not so scary. If it continues, you should still contact your neurologist.
Best!
Joy
Hi Gary,
Thanks for your information on disk disease as a possibility, I will mention this to the neuro as well. Hope your feeling better also.
/Marc.
springmang said:
I myself have disintegrating disc disease in my neck and back which gives me a similar problem, if I were you I'd have this checked out. Gary
Hi Quittergranny
Thank you for your info on glutton.which I am going to try as of tomorrow. Will keep you posted.
Regards
Happy
PS Love your attitude…go girl!
Quiltergranny said:
Response to Happy:
I have considered diet and lifestyle a lot. I quit smoking 2 years ago, not much of a drinker and thought I was eating healthy BUT I think there may be a connection with gluten, leaky gut syndrome and allowance of proteins to cross the barrier between the gut and your immune system and triggering the autoimmune response. I also asked for and got a referral for PT to maximize what muscle I have left in my legs. I also started a Paleo diet that eliminates everything with gluten, dairy and nuts - it’s harsh - all I eat is protein (no eggs), fresh fruits and vegetables. I’ll give up eggs and peanut butter and bread if I can go upstairs and get out of chairs again.
I have had the pleasure of lower cranial nerve involvement, facial muscles, tongue, swallowing, and vocal cords with difficulty with shortness of breath. i most certainly experience altered sensations. i had tingling mostly in the tongue, nose ect. i don't remember any back of head issues. perhaps look up the upper cranial nerves to see which one of them innervates the head from a sensory perspective.
To Happy - thanks and let me know how it goes. I would really like to have control of my life back and that's what I'm striving for.
Happy said:
Hi Quittergranny
Thank you for your info on glutton.which I am going to try as of tomorrow. Will keep you posted.
Regards
Happy
PS Love your attitude...go girl! Quiltergranny said:Response to Happy:
I have considered diet and lifestyle a lot. I quit smoking 2 years ago, not much of a drinker and thought I was eating healthy BUT I think there may be a connection with gluten, leaky gut syndrome and allowance of proteins to cross the barrier between the gut and your immune system and triggering the autoimmune response. I also asked for and got a referral for PT to maximize what muscle I have left in my legs. I also started a Paleo diet that eliminates everything with gluten, dairy and nuts - it's harsh - all I eat is protein (no eggs), fresh fruits and vegetables. I'll give up eggs and peanut butter and bread if I can go upstairs and get out of chairs again.
Thanks Michelle,
From research and responses I don't see much evidence either linking this specifically with CIDP, but there are certainly other issues that can potentially cause this and I hope to find out soon. I appreciate your response and I hope you're feeling ok.
/Marc.
Michelle1966 said:
I have had the pleasure of lower cranial nerve involvement, facial muscles, tongue, swallowing, and vocal cords with difficulty with shortness of breath. i most certainly experience altered sensations. i had tingling mostly in the tongue, nose ect. i don't remember any back of head issues. perhaps look up the upper cranial nerves to see which one of them innervates the head from a sensory perspective.
Hi Michelle
Were you taking steroids when you experienced these things? I had similar on a “cocktail” of prednisone and azathyaprin…an immune suppressant. Thought I was on the way out…not funny. You seem well versed in the disease.
Regards
Magge
Michelle1966 said:
I have had the pleasure of lower cranial nerve involvement, facial muscles, tongue, swallowing, and vocal cords with difficulty with shortness of breath. i most certainly experience altered sensations. i had tingling mostly in the tongue, nose ect. i don’t remember any back of head issues. perhaps look up the upper cranial nerves to see which one of them innervates the head from a sensory perspective.
Happy
i was only on 5mg of prednisone, and my IVIG had been reduced to every 4weeks. The disease had been overpowering the treatment for many months, but chose to focus the attack on a different area.
Happy said:
Hi Michelle
Were you taking steroids when you experienced these things? I had similar on a "cocktail" of prednisone and azathyaprin....an immune suppressant. Thought I was on the way out....not funny. You seem well versed in the disease.
Regards
Magge
Michelle1966 said:I have had the pleasure of lower cranial nerve involvement, facial muscles, tongue, swallowing, and vocal cords with difficulty with shortness of breath. i most certainly experience altered sensations. i had tingling mostly in the tongue, nose ect. i don't remember any back of head issues. perhaps look up the upper cranial nerves to see which one of them innervates the head from a sensory perspective.
Hi Michelle
I was on 50mg and 80 mg of the azathyaprin…mega dosage. What a rotten disease this is, and no known cure so far. Going out with my dog now…so catch you later.
Michelle1966 said:
Happy
i was only on 5mg of prednisone, and my IVIG had been reduced to every 4weeks. The disease had been overpowering the treatment for many months, but chose to focus the attack on a different area.
Happy said:Hi Michelle
Were you taking steroids when you experienced these things? I had similar on a “cocktail” of prednisone and azathyaprin…an immune suppressant. Thought I was on the way out…not funny. You seem well versed in the disease.
Regards
Magge
Michelle1966 said:I have had the pleasure of lower cranial nerve involvement, facial muscles, tongue, swallowing, and vocal cords with difficulty with shortness of breath. i most certainly experience altered sensations. i had tingling mostly in the tongue, nose ect. i don’t remember any back of head issues. perhaps look up the upper cranial nerves to see which one of them innervates the head from a sensory perspective.
I have recently been having tingling and numbness around my mouth and jaw . Previously I had difficulty swallow and what felt like a swollen tongue. I start IVIG today I can’t sleep I am nervous between arms legs and facial sensations I am becoming extremely anxious . My vision gets really bad then it improves and then bad again. Nothing is consistent . It’s quite irritating feet are cold arms are burning , face is tingling and vision is allover the place . Add in back spasms and bladder issues. Sorry just rambling . I am very nervous.
Hi Robert,
Sorry for the pain you're going through, it appears that you have some cranial involvement as well. At some point I will be starting this treatment also, but I'm sure it will make us better with the rights meds. I realize that stress and anxiety doesn't help, but things will get better and wishing you well.
/Marc.
Robert Martin said:
I have recently been having tingling and numbness around my mouth and jaw . Previously I had difficulty swallow and what felt like a swollen tongue. I start IVIG today I can't sleep I am nervous between arms legs and facial sensations I am becoming extremely anxious . My vision gets really bad then it improves and then bad again. Nothing is consistent . It's quite irritating feet are cold arms are burning , face is tingling and vision is allover the place . Add in back spasms and bladder issues. Sorry just rambling . I am very nervous.