bgirl3
03-23-2005, 05:45 PM
Hi... I'm new to the board. I found it while searching some more for whatever it is that is wrong with me. If anyone has any ideas, I would greatly appreciate them.
I am 28 years old, female, 3 children, and in pretty good health. I have had 3 strange 'episodes' within the past year and a half. Each of these lasts for around 1-2 months. They have been a year apart and 3 months apart. My symptoms at the time are: numbness and tingling in arms and legs... it seems to start at my fingers and toes and work its way up, feet and hands fall asleep very easy, joint pain... fingers, toes, wrists, ankles, knees, elbows, hips, extreme fatigue, shooting pains down my spine, back ache, and neck pain.
Now, I may be forgetting a few... there seems to be so many symptoms. I also have these strange 'shocks' in my head. My doctor has yet to figure out why anyone would have them and has even told me that it is not possible. These electrical 'shocks' only last for a second. They seem to be easily brought on by fast eye movement. These happen quite frequently, not just during an 'episode'.
I have had an MRI on my upper and lower spine and an EMG on my arms along with much bloodwork for arthritis... all negative. There is nothing abnormal at the time when these 'episodes' begin... no extra stress, illness, etc.
I have an appointment with a neurologist, but not until June. The pain gets really bad and it gets to the point where I am limping around. Different positions seem to make my feet and hands fall asleep faster. There is the 'heavy' asleep and 'pins & needles'. It is also much worse in the morning or after sitting still for a long period... like my body freezes up.
Any help?!?!
Thanks!!!
I am 28 years old, female, 3 children, and in pretty good health. I have had 3 strange 'episodes' within the past year and a half. Each of these lasts for around 1-2 months. They have been a year apart and 3 months apart. My symptoms at the time are: numbness and tingling in arms and legs... it seems to start at my fingers and toes and work its way up, feet and hands fall asleep very easy, joint pain... fingers, toes, wrists, ankles, knees, elbows, hips, extreme fatigue, shooting pains down my spine, back ache, and neck pain.
Now, I may be forgetting a few... there seems to be so many symptoms. I also have these strange 'shocks' in my head. My doctor has yet to figure out why anyone would have them and has even told me that it is not possible. These electrical 'shocks' only last for a second. They seem to be easily brought on by fast eye movement. These happen quite frequently, not just during an 'episode'.
I have had an MRI on my upper and lower spine and an EMG on my arms along with much bloodwork for arthritis... all negative. There is nothing abnormal at the time when these 'episodes' begin... no extra stress, illness, etc.
I have an appointment with a neurologist, but not until June. The pain gets really bad and it gets to the point where I am limping around. Different positions seem to make my feet and hands fall asleep faster. There is the 'heavy' asleep and 'pins & needles'. It is also much worse in the morning or after sitting still for a long period... like my body freezes up.
Any help?!?!
Thanks!!!
Sponsor
eep2
03-24-2005, 12:44 PM
You probably have already had it checked, but if not, definitely get your vitamin b12 level checked, and get the actual numbers of your b12 level, not just a "normal" result from the doctor. You can have neurological problems with a low normal result. Normal range runs from 250-1100.
Also Celiac Disease (an intolerance to foods containing gluten found in wheat, barley and rye) can cause neurological problems in the absense of gastrointestinal symptoms, the more recognized symptoms of the disease that doctors look for. A blood test can give a pretty definite diagnosis if you have this.
Just a couple of thoughts.
Also Celiac Disease (an intolerance to foods containing gluten found in wheat, barley and rye) can cause neurological problems in the absense of gastrointestinal symptoms, the more recognized symptoms of the disease that doctors look for. A blood test can give a pretty definite diagnosis if you have this.
Just a couple of thoughts.
k9stylist
03-26-2005, 12:09 AM
Not sure about your other symptoms but as to the "shocks" to your head, do a search on Trigeminal Neuralgia. Sounds like it could be that, that was my original dx but the neuro and I decided it is not that as my pain is sustained. Good Luck to you.
bgirl3
03-26-2005, 12:02 PM
Thanks for the input. I checked into the B12 and Celiacs Disease... they both sound like possibilities that I will bring up with my PCP. I also looked into the trigeminal neuralgia, but I don't think that is it. The 'shocks' that I get are not that painful... just annoying. It is inside of my head, not in my face.
I am getting frustrated at this pain and weakness. My PCP was telling me that maybe it is just stress. Ugh!?!?! I know it isn't. My joints are snapping now and my legs and arms are getting very weak.
Thank you again for any suggestions!
I am getting frustrated at this pain and weakness. My PCP was telling me that maybe it is just stress. Ugh!?!?! I know it isn't. My joints are snapping now and my legs and arms are getting very weak.
Thank you again for any suggestions!
Kathim
03-28-2005, 11:34 AM
Just a thought that a workup with a RHeumatologist should be done. I know you said you were seeing a Neurologist but not til June. A Rheumy could rule out all auto-immune problems. I was in the same boat for 6 years before being dx with LUPUS by then the neuropathy got so bad I am in bad shape with it now.
It seems you are seeking on your own and this is what you MUST do.......dont stop til you have some valid answers.
Kathi
It seems you are seeking on your own and this is what you MUST do.......dont stop til you have some valid answers.
Kathi
k9stylist
03-31-2005, 12:29 PM
bgirl3,
you may want to check out the fibromyalgia boards too.
you may want to check out the fibromyalgia boards too.
bgirl3
04-02-2005, 08:48 PM
Thanks Kathim! That's exactly what I'm going to do.
I was at my doc yesterday and he is sending me to a rheumatologist for now since my appointment with the neurologist is not until June. He believes it may be MS but told me that it is quite difficult to get a definite diagnosis.
I was tested for lupus and it came back negative. As did the bloodwork for different types of arthritis. My MRI's came back negative for lesions and my EMG was negative as well.
My arms and legs are getting weaker every day. I'm losing my balance quite easily. And these 'shocks' in my head are very annoying. My eyes are starting to hurt a lot as well. Like there is an eyelash in there, but there isn't. No real vision loss, though, which is good.
Thank you everyone for all of your input and help!
I was at my doc yesterday and he is sending me to a rheumatologist for now since my appointment with the neurologist is not until June. He believes it may be MS but told me that it is quite difficult to get a definite diagnosis.
I was tested for lupus and it came back negative. As did the bloodwork for different types of arthritis. My MRI's came back negative for lesions and my EMG was negative as well.
My arms and legs are getting weaker every day. I'm losing my balance quite easily. And these 'shocks' in my head are very annoying. My eyes are starting to hurt a lot as well. Like there is an eyelash in there, but there isn't. No real vision loss, though, which is good.
Thank you everyone for all of your input and help!
Blue102
04-09-2005, 04:56 PM
The shocks in your head could be related to anxiety. Do you have anxiety or take antidepressants?
bgirl3
04-25-2005, 01:36 PM
Hi Blue!
I do have anxiety problems. I have been on klonopin for almost 12 years now. I am in the process of withdrawing from it since I have recently found out that it is not good to be on it for so long. I have had severe panic attacks that led to agoraphobia. About a year ago, I found the right therapist and have not had a panic attack since or any bouts of agoraphobia. I have learned how to keep my anxiety in check.
Do you think all the past anxiety or long term use of klonopin could be causing all of this? My appt with the rheumatologist is next week, and neurologist is not until June.
Thanks!
Kara
I do have anxiety problems. I have been on klonopin for almost 12 years now. I am in the process of withdrawing from it since I have recently found out that it is not good to be on it for so long. I have had severe panic attacks that led to agoraphobia. About a year ago, I found the right therapist and have not had a panic attack since or any bouts of agoraphobia. I have learned how to keep my anxiety in check.
Do you think all the past anxiety or long term use of klonopin could be causing all of this? My appt with the rheumatologist is next week, and neurologist is not until June.
Thanks!
Kara
angelwings171
04-26-2005, 02:23 AM
I would also like to suggest you getting a lumbar puncture to check the protein levels in your spinal fluid. You are having a reaccuring or remitting neuromuscular auto-immune attack of some sorts. I think the neurologist will be able to help you sort thru all of this. Ask about Post Viral Neuropathy, Guillain Barre Syndrome, or possibly CIDP.
Best of Luck
Angela
Best of Luck
Angela
rottaviano
05-18-2005, 10:03 PM
Bgirl3,
These symptoms seem very similar to mine. I know exactly the "shocks" in your head that you are talking about. I get them quite frequently while watching TV, and rapid movement does seem to trigger them. I have had the numbness in arms and legs and has progressed to tremors in both. They wx and wane but have been persistent for the past 2 months. All Neuro test have been negative including MRI. All blood test are normal except ana of 1:160 Homogenous. dsDNA and SM antibody are both negative. I am still looking for answers also. I just wanted to let you know there are others out there like you. If you get any answers please post, I will do the same.
God Bless.
These symptoms seem very similar to mine. I know exactly the "shocks" in your head that you are talking about. I get them quite frequently while watching TV, and rapid movement does seem to trigger them. I have had the numbness in arms and legs and has progressed to tremors in both. They wx and wane but have been persistent for the past 2 months. All Neuro test have been negative including MRI. All blood test are normal except ana of 1:160 Homogenous. dsDNA and SM antibody are both negative. I am still looking for answers also. I just wanted to let you know there are others out there like you. If you get any answers please post, I will do the same.
God Bless.
bgirl3
05-28-2005, 12:20 AM
FINALLY!!!
The rheumatologist told me that I have fibromyalgia. She explained a lot to me and I've researched it a bit and it all makes sense. I never thought it was a 'real' disease, but I believe it now. I have all of the tenderpoints that I have heard about with fibro. Some tests showed that my body does not get into stage 4 sleep due to muscle spasms. Because of not getting into deep sleep, my body does not restore itself the way it should during sleep.
Phew... I'm so relieved to hear that I'm not crazy!
She wants me to still see the neurologist and has given me referrals to another opthalmologist and gastrointestinal doctor because she is concerned about some other test results and symptoms. But, hey, this is a good start.
Hope this helps some others with similar symptoms. I will update on this link if I hear anything else from other doctors. The rheumatologist I am seeing is so awesome... what a difference that makes! She spent an hour and a half with me at my initial appointment! It is so nice to have a thorough and caring doctor!
Take care everyone!
Kara
The rheumatologist told me that I have fibromyalgia. She explained a lot to me and I've researched it a bit and it all makes sense. I never thought it was a 'real' disease, but I believe it now. I have all of the tenderpoints that I have heard about with fibro. Some tests showed that my body does not get into stage 4 sleep due to muscle spasms. Because of not getting into deep sleep, my body does not restore itself the way it should during sleep.
Phew... I'm so relieved to hear that I'm not crazy!
She wants me to still see the neurologist and has given me referrals to another opthalmologist and gastrointestinal doctor because she is concerned about some other test results and symptoms. But, hey, this is a good start.
Hope this helps some others with similar symptoms. I will update on this link if I hear anything else from other doctors. The rheumatologist I am seeing is so awesome... what a difference that makes! She spent an hour and a half with me at my initial appointment! It is so nice to have a thorough and caring doctor!
Take care everyone!
Kara
Trishm
06-26-2005, 06:41 PM
Hi Kara,
I, also, had a terrible bout of tingling, numbness, and irritating shooting pain jumping around my body. The pain only lasted about a minute or so. At one point my whole left side of my body felt numb with a sensational feeling. I thought I was losing my mind at one point. My GP immediately ordered a CAT scan of the brain and blood work, and thank GOD, the results were all normal. However, I was under extreme stress when the neuropathy began. That is, I was awaiting results from a pelvis bone scan for a possible mass. Once I received the good results from my doctor about my pelvis bone scan, my symptoms basically went away. Iv'e never felt so much stress in my entire lofe while waiting for my bone scan results: I was terrified! It turned out the abnormal image on the x-ray was an artifact in the film or the bone was normal. However, My GP sent me to neurologist. My neurologist was perplexed, and said sometimes viruses can bring on this kind of neuropathy; however, I didn't have a virus.
Although I sometimes get numbness or tingling in my toes and fingers, I believe it's from my water pill that I'm taking for my hypertension, which I inherited from my father. I wish you well. :wave:
I, also, had a terrible bout of tingling, numbness, and irritating shooting pain jumping around my body. The pain only lasted about a minute or so. At one point my whole left side of my body felt numb with a sensational feeling. I thought I was losing my mind at one point. My GP immediately ordered a CAT scan of the brain and blood work, and thank GOD, the results were all normal. However, I was under extreme stress when the neuropathy began. That is, I was awaiting results from a pelvis bone scan for a possible mass. Once I received the good results from my doctor about my pelvis bone scan, my symptoms basically went away. Iv'e never felt so much stress in my entire lofe while waiting for my bone scan results: I was terrified! It turned out the abnormal image on the x-ray was an artifact in the film or the bone was normal. However, My GP sent me to neurologist. My neurologist was perplexed, and said sometimes viruses can bring on this kind of neuropathy; however, I didn't have a virus.
Although I sometimes get numbness or tingling in my toes and fingers, I believe it's from my water pill that I'm taking for my hypertension, which I inherited from my father. I wish you well. :wave:
oday
08-06-2005, 04:35 PM
Did you get your thyroid tested?
bgirl3
08-22-2005, 06:46 PM
Yes, my thyroid bloodwork came back normal... just as everything else. I had a spinal tap recently that came back normal as well. My neurologist said my lymphocytes were low(???), but that it means nothing. Not sure what that means.
Everything to date has been normal... MRIs of head, lumbar and cervical spine; CT scan of head; EEG; EMG; bloodwork for lupus, thyroid, lymes, diabetes, sjogrens, etc.
My rheum told me I have 14 of the 18 criteria for fibromyalgia. I don't disagree with this. I was one that always believed that fibro and CFS didn't exist, but I believe now. I do have all of the symptoms. However, I still think there is something neurological wrong. My neurologist has dismissed it since my spinal tap came back normal. You really can't get more advanced than a spinal, right? Something would have shown.
I still have bad migraines where my body, mostly left side, goes numb. I fall down all the time and run into things. My legs and arms are always tingly or numb. Muscle spasms frequently. Losing site in right eye and eye pain a lot. Eye doc told me I have extremely dry eyes to the point it has damaged my eyes... a sign of sjogrens... but bloodwork normal.
I'm beginning to just think I'm crazy. I will do what I am told for the fibro and accept that that is all that is wrong with me. I have given up on all the specialists and tests. As a single mother of three, I don't have the time or energy for it.
Thanks everyone for all the help and support!
Everything to date has been normal... MRIs of head, lumbar and cervical spine; CT scan of head; EEG; EMG; bloodwork for lupus, thyroid, lymes, diabetes, sjogrens, etc.
My rheum told me I have 14 of the 18 criteria for fibromyalgia. I don't disagree with this. I was one that always believed that fibro and CFS didn't exist, but I believe now. I do have all of the symptoms. However, I still think there is something neurological wrong. My neurologist has dismissed it since my spinal tap came back normal. You really can't get more advanced than a spinal, right? Something would have shown.
I still have bad migraines where my body, mostly left side, goes numb. I fall down all the time and run into things. My legs and arms are always tingly or numb. Muscle spasms frequently. Losing site in right eye and eye pain a lot. Eye doc told me I have extremely dry eyes to the point it has damaged my eyes... a sign of sjogrens... but bloodwork normal.
I'm beginning to just think I'm crazy. I will do what I am told for the fibro and accept that that is all that is wrong with me. I have given up on all the specialists and tests. As a single mother of three, I don't have the time or energy for it.
Thanks everyone for all the help and support!
chigs489
08-24-2005, 05:54 PM
bgirl3,
have you taken any of the following drugs in the last 3 years?
Avelox
Levaquin
Cipro
Tequin
These are all used to treat infections, and can CAUSE neuropathy, among other things. The adverse reactions caused by these drugs can go on for years after taking them.
have you taken any of the following drugs in the last 3 years?
Avelox
Levaquin
Cipro
Tequin
These are all used to treat infections, and can CAUSE neuropathy, among other things. The adverse reactions caused by these drugs can go on for years after taking them.
bgirl3
08-25-2005, 10:05 AM
No, none of those. In the past few years, I have been on...
-Celebrex (for joint pain)
-Celexa (for anxiety)
-Klonopin (for anxiety... on for 12 yrs, recently found out it is not good to be on it so I have been tapering off)
-Albuterol (for asthma)
-Reglan (for reflux... not sure of spelling)
-Restasis (for eye problems)
I have taken an occasional Advil or Aleve, but generally do not like taking any additional meds. The above meds I haven't been on at the same time, just all of the ones I have taken over the years.
Thanks!
-Celebrex (for joint pain)
-Celexa (for anxiety)
-Klonopin (for anxiety... on for 12 yrs, recently found out it is not good to be on it so I have been tapering off)
-Albuterol (for asthma)
-Reglan (for reflux... not sure of spelling)
-Restasis (for eye problems)
I have taken an occasional Advil or Aleve, but generally do not like taking any additional meds. The above meds I haven't been on at the same time, just all of the ones I have taken over the years.
Thanks!
Lena-marie
08-25-2005, 02:22 PM
Hi bgirl3, I also know what your going through the last 6 months have been utter hell, I have burning in my legs and feet and lately my hands and arms slightly too! Its a terrible feeling, like raw skin! and I have no damn clue why this is all happening..the ONLY thing I can think of its either my xanax causing this I've been on it for 2 years at the lowest dose 0.25mg once daily b4 bed! or its when I slipped right before this happened and almost fell, I think it might b e my back cause my spine feels funny and hurts..myabe an impinged nerve or something, I just recently finally got insurance so now I can start going to dr's finally, geez its been 6 months..I did have a CBC and nothing was found besides my cholestrol was a tiny bit high..thats it no diabetes nadda!! its strange the burning comes and goes...very odd!! it smostly here though unfortunately! I take a multi and a b50 complex and b12 sublingual and I started alpha lipoic acid a month ago no results yet..although when I was home visiting recently I did have some good days because I was swimming alot!! maybe it helped my spine or what ever is causing this crap!!!
your not alone, I pray we have relief soon!!
Lena :wave:
your not alone, I pray we have relief soon!!
Lena :wave: