Aa
So over it...
So...I'm a 33 year old mom who has been dealing with an apparent non existent illness for over a year now. I have had 2 spinal MRI's which show spinal stenosis C3-C5, 2 head CT that show nothing, a LP (still waiting for the OCB results, but no protein), ANA that shows 1:160 centromere pattern, negative for lupus, sickle cell and RA. My dad has RA, his sis has MS, and his other sisters daughter has MS (she and I are a yr apart). Anyway, I am plagued with neverending fatigue, muscle spasms and twitching that never seems to happen when I'm in front of the neuro. I get all over and I do mean ALL over body pain, swelling, numbness, tingling in my arms and legs and most recently: a 16 day headache with left eye pain. So far my neuro and every other dr I come across say the same thing "I dont know, your symptoms don't fit into one condition" Now I just laugh, and tell them all the same thing: "Do NOT send me to psych, I'm not crazy and this is REALLY happening to me!!!" I had EMG and nerve conduction today...and I just dont wanna be poked and prodded anymore :( This is mentally and physically exhausting...
So I finished the prednisone and as I dwindled down to 20 mg I realized that my left eye was starting to hurt again, and I had intermittent patches of vision loss. So yeah I was in denial for a few days, then my neice sold me out to my dad who in turn made an eye dr appt for me yesterday! I went to the appt prepared to get dilated and all, but the eye dr refused to treat me! She said I needed to go to the ER. Well, I was NOT doing any such thing since I didn't wanna be there in the first place! So, I called my neuro (well the nurse since I'm apparently no one's patient now) hoping to get an appt, and she called me back to tell me to go to the ER :(
I spent 8 hours in ER for them to tell me that I have uveitis and give me an appt to see the opthalmalogist on Monday. In the meantime, my headaches are gone, but my eye aches like all get out...and my vision is really weird...sigh
AND THE SAGA CONTINUES....
I spent 8 hours in ER for them to tell me that I have uveitis and give me an appt to see the opthalmalogist on Monday. In the meantime, my headaches are gone, but my eye aches like all get out...and my vision is really weird...sigh
AND THE SAGA CONTINUES....
Thanks forthe warm welcome Sidesteps! I do hope you find some kind of answer soon! I am hoping that I too am sent to a Rheumy if no one can figure this thing out, so best wishes to you on that. And yes...denial is more than a river in Egypt lol, and it works great to get thru those long depressing days.
Welcome,
Boy... we do sound SO familiar. I am not in the best mindset at the moment to write lengthy paragraphs... My Neuro just started running repeat tests. My tests have so far come back normal yet my clinicals haven't. I have had two or three "attacks" and chronic symptoms. I do not have any pain so I feel for you.
My new Neuro has requested that I seek a Rheumy to get their thumb print on my situation. If the latest tests come back negative she has indicated that she would refer me to a specialist in Seattle. I am not sure where to go from here but listen to a couple other doctor's who said that sometimes we just have to wait for things to get worse (not really re-assuring but I might try to go into denial until that time comes.) ;)
Anyway, I just wanted you to know you are not alone. There are many of us here and welcome.
Have a great day. :)
Boy... we do sound SO familiar. I am not in the best mindset at the moment to write lengthy paragraphs... My Neuro just started running repeat tests. My tests have so far come back normal yet my clinicals haven't. I have had two or three "attacks" and chronic symptoms. I do not have any pain so I feel for you.
My new Neuro has requested that I seek a Rheumy to get their thumb print on my situation. If the latest tests come back negative she has indicated that she would refer me to a specialist in Seattle. I am not sure where to go from here but listen to a couple other doctor's who said that sometimes we just have to wait for things to get worse (not really re-assuring but I might try to go into denial until that time comes.) ;)
Anyway, I just wanted you to know you are not alone. There are many of us here and welcome.
Have a great day. :)
Looks like the Prednisone is working for me! My headaches are down to a bare minimum now, only abt an hour or so per day!!!! I'm SO looking forward with getting on with my summer...it's the first summer I've had since 2008 with no school!
Wishing you all a bright sunkissed day, and no pain :)
Wishing you all a bright sunkissed day, and no pain :)
yes...very exhausting! I spent yesterday laughing and crying simultaneously from this past weeks experience and waking up to a completely swollen face (looked like I was on the losing end of a fight). Today has been so much better, I've only had a headace for part of the day-YAY!
Just thought I would share this bit with you all: I was reading the insert that came with my Elavil and one of the side effects is headache! Well I sure hope I don't get that as a side effect, what a mess that would be lol! (I'm finally able to laugh at this stuff).
Just thought I would share this bit with you all: I was reading the insert that came with my Elavil and one of the side effects is headache! Well I sure hope I don't get that as a side effect, what a mess that would be lol! (I'm finally able to laugh at this stuff).
Our pain, and chasing after anything that might help us... is so exhausting.
Spoke with my neuro earlier today, told her I'm dying over here and haven't been able to go to work bc of this headache and that she HAS to do something! First she was going to put me on Depakote, but after conferencing with the neuro team (I have frequently been their topic of discussion lately) she decided that I should do a week long stint of Prednisone and Elavil nightly until seen again.
She reviewed my results that HAVE come in, the OCB not being one of them, and commented on how normal they were (sigh). Then she said something that absolutely shocked me and brought a smile to my face: "I don't like the diagnosis of Fibromyalgia, but maybe that's where we are headed, but I want your films from your C-spine MRI reviewed again." I'm sure you all know I wasn't smiling bc I want to have Fibromyalgia, but darnit it sure feels good for someone to give you a reason as to why you are sick-even if it's a maybe :)
Question: Since she is wanting to look closer at this MRI, do you all think she may really be thinking MS and not telling me? Hmmm....I tell her no holds barred when I speak to her agaain. I've got my big girl panties on, I can handle it.
She reviewed my results that HAVE come in, the OCB not being one of them, and commented on how normal they were (sigh). Then she said something that absolutely shocked me and brought a smile to my face: "I don't like the diagnosis of Fibromyalgia, but maybe that's where we are headed, but I want your films from your C-spine MRI reviewed again." I'm sure you all know I wasn't smiling bc I want to have Fibromyalgia, but darnit it sure feels good for someone to give you a reason as to why you are sick-even if it's a maybe :)
Question: Since she is wanting to look closer at this MRI, do you all think she may really be thinking MS and not telling me? Hmmm....I tell her no holds barred when I speak to her agaain. I've got my big girl panties on, I can handle it.
Glad you commented on my post! To answer your questions: I really don't know if they ever tested me for lyme disease. The dr that did my EMG yesterday told me that my stenosis is not enough to cause the symptoms I'm having so...hmmm.
Actually I did have an MRI of my brain last yr-I forgot lol. It was clean also, which was why my neuro ordered the MRI of my C-spine. What are evoked potentials? I think I heard the attending dr suggest that yesterday after the dr that did my EMG told him that I had crazy waves while resting in my upper arm.
I'm happy with my neuro, but she's leaving as she is a resident and will be done with her residency on Thursday :( upside is: she has presented my case to the whole neuro dept so whenever I see one of them they say "Oh I know who you are!" So my hopes are up that they believe I'm not crazy...
Treating my symptoms? Hmmm. well I was taken via ambulance from my neuro appt last Thursday to the ER for treatment (LP and Vicodin ha!) a rx for Imitrex, then discharged. Friday my neuro called me back in to ER bc my headache was still there. So that time I got the head CT, IV Morphine and a shot of Imitrex (which btw the oral pills made me sooo sick), my headache finally went away...only to return Saturday mid day :(
So they tell me to take Excedrin migraine (double ha!) and Aleve for the body pain (triple ha!). I'm sooo frustrated that I'm beginning to believe that maybe it is just stress. Oh yeah get this: Day 17 of my neverending headache and left eye pain....
Actually I did have an MRI of my brain last yr-I forgot lol. It was clean also, which was why my neuro ordered the MRI of my C-spine. What are evoked potentials? I think I heard the attending dr suggest that yesterday after the dr that did my EMG told him that I had crazy waves while resting in my upper arm.
I'm happy with my neuro, but she's leaving as she is a resident and will be done with her residency on Thursday :( upside is: she has presented my case to the whole neuro dept so whenever I see one of them they say "Oh I know who you are!" So my hopes are up that they believe I'm not crazy...
Treating my symptoms? Hmmm. well I was taken via ambulance from my neuro appt last Thursday to the ER for treatment (LP and Vicodin ha!) a rx for Imitrex, then discharged. Friday my neuro called me back in to ER bc my headache was still there. So that time I got the head CT, IV Morphine and a shot of Imitrex (which btw the oral pills made me sooo sick), my headache finally went away...only to return Saturday mid day :(
So they tell me to take Excedrin migraine (double ha!) and Aleve for the body pain (triple ha!). I'm sooo frustrated that I'm beginning to believe that maybe it is just stress. Oh yeah get this: Day 17 of my neverending headache and left eye pain....
Hello! I just wanted to join in welcoming you here. You are definately in good company :-)
I'm very sorry to hear that you are going through all this! It is surely not for the faint of heart!!!!
It sounds like you have had a lot of testing done...have you had any evoked potentials? A MRI of the brain? From my understanding, MRI is much more sensitive to changes in the brain than CT is.
Are you happy with your neuro? Maybe a second (or third or forth) opinion is in order? I would definately think that with your family history, your doctors should be taking you a little more seriously! Are they at least treating your symptoms? I really hope so!
Anyways, again, welcome to our community!!! The people here are wonderful!!! If you ever need support, a shoulder to cry on, or just to get something off your shoulders, you will find
excellent support here!!! ;-)
Hugs to you!
Sarah
I'm very sorry to hear that you are going through all this! It is surely not for the faint of heart!!!!
It sounds like you have had a lot of testing done...have you had any evoked potentials? A MRI of the brain? From my understanding, MRI is much more sensitive to changes in the brain than CT is.
Are you happy with your neuro? Maybe a second (or third or forth) opinion is in order? I would definately think that with your family history, your doctors should be taking you a little more seriously! Are they at least treating your symptoms? I really hope so!
Anyways, again, welcome to our community!!! The people here are wonderful!!! If you ever need support, a shoulder to cry on, or just to get something off your shoulders, you will find
excellent support here!!! ;-)
Hugs to you!
Sarah
dear patientnurse,
i am so, so, so sorry that you are going through all of this. you have come to the right place, though, because we have all been there. and i mean ALL of us. given your family hx, the likelihood of an autoimmune disease is pretty significant, especially with your ana result. even so, have you had lyme disease testing done?
my first neuro tried to pin my neuro symptoms on cervical spine stenosis from c3-c7 and a disc herniation at c5-c6. i had surgery to repair the herniation and, as i expected, nothing really improved. i still suffer many of the same symptoms you described. and lord knows how many times i have been told i am just suffering from stress! it makes me want to scream!!
anyway, i just wanted to way welcome. you will find yourself in good company here.
blessings to you,
binx
i am so, so, so sorry that you are going through all of this. you have come to the right place, though, because we have all been there. and i mean ALL of us. given your family hx, the likelihood of an autoimmune disease is pretty significant, especially with your ana result. even so, have you had lyme disease testing done?
my first neuro tried to pin my neuro symptoms on cervical spine stenosis from c3-c7 and a disc herniation at c5-c6. i had surgery to repair the herniation and, as i expected, nothing really improved. i still suffer many of the same symptoms you described. and lord knows how many times i have been told i am just suffering from stress! it makes me want to scream!!
anyway, i just wanted to way welcome. you will find yourself in good company here.
blessings to you,
binx
You must join this user group in order to participate in this discussion.
You are reading content posted in the SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Group
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
