I was diagnosed with lupus when i was 14 after being diagnosed with rheynaulds. I didnt understand, and my mother didnt bother listening to the doctors. I went to scotish rite hospital in dallas and they told me i tested positive for "a connective tissue disease". Later on, when i was about 18 I went to a doctor and told him "test me for lupus", he said it was a waiste of my time and money but did it anyways. I tested positive. I am 25 now.
Since i can remember I have had problems with cold weather. my body temperature drops dramatically and i shiver like crazy. I have to crawl under and electric blanket for hours.
6 months ago i was wrestling with a friend of mine. I was put into an awkward position that resulted in my head being bend forward and having a hard time breathing. when i came to, i had severe vision problems. and severe balance problems. The symptoms went away but came back about 1 week later. I actually posted on this forum once about them and angelic told me to look into my lupus. I posted under the name of rapoon. Anyways, the symptoms slowly went away and have come back recently.
some of my symptoms are:
-"scattered" vision, jumpy vision, difficulty focusing, sensitivity to light. Working on a computer and florescent lights always make my symptoms worse. My vision literally sometimes twitches with my pulse. My vision looks like its twitching but my eyes arent physically moving.
-Vertigo, but NOT spinning around, more of an imbalance. Often the sensation of falling backwards. neck sometimes hurts and back of head
-pressure above and behind my eyes (extreme at times)
-pressure and foggyness in my head. I get confused. Forget things
-HOT showers and baths ALWAYS make my symptoms worse
-sometimes wake up with numb hands
-I can distinctly feel the strong pulse in the back of my neck at the base of my skull. it makes it VERY hard to sleep.
-My brain sometimes feels like its literally shivering
-Spasms and weird feelings in the back of my head and neck.
I have seen tons of NORMAL doctors for this. Most tell me crap like "its just stress", or "its all psychological". Im tired of this. this is RUINING my life. I just got out of school. just got a job and its all falling apart. No money, No insurance. I've had 1 doctor tell me that it is unlikely that any sort of mass is present in my head, but there may be a possibility of nerve inflamation in my brain that is causing my symptoms. Lupus poped in my head when he said that. I am seeing a Nuerologist in 2 days. I will get an MRI done. Will an MRI be of any use??? Will it show inflamation. Im tired of scouring the ney to only find bits and peices of info related to lupus. I tired of talking to doctor who i fork over hundreds and hundreds of dollars to (cause I have no insurance) and who give me BS answers.
Those of you who know alot about lupus and how it affects the brain PLEASE, PLEASE help me. Is seeing a nuerologist worth it, what about the MRI??? what kind of dr should I see???? My normal bloodwork always comes up normal. what kind of specific, detailed bloodwork should i have done??????
All I have to say is "grrrrrrr!!!" at the docs that told you that it was psychological!!!! You have Lupus for petes sake, and with Lupus you can have brain insults (inflammation related) that can cause us to feel like hell. I think that these doctors say that it is all in our heads so that THEY don't have to help us. They don't like to waste our time! The fact is that you have Lupus and it can affect the brain.
I think it would be worth your time to be tested for Antiphospholipid Syndrome. Basically, APS is "sticky blood". The blood is so sticky in fact, you can have headaches/migraines, clots forming in various parts of the body (and you wouldnt know that you had them lots of times!), "brain fog" etc. You can ask the Neurologist to run those blood tests since you will seeing him/her soon. The blood tests are the anticardiolipin and the Lupus anticoagulant. Please read the "Neurological symptoms and possible Lupus? Please read" post to see if you fit APS. APS goes with Lupus, and lots of us with Lupus have APS symptoms. You could also have CNS Lupus (which affects the central nervous system). The MRI study will show inflammation, lesions or clots. They are very helpful when doctors are trying to isolate problems within the brain. If you do end up having "lesions" or "clots" or "hypodense areas" then my guess is that you have APS. They say that APS often presents very much like MS does, with optic nerve problems, migraines etc. The fogginess that you are having too can be explained by APS! Please check out that forum that I noted above and see if you "fit" that criteria. My guess is that you have APS. OH I have to say too that you can have APS and have the blood work NEGATIVE. Lots of doctors are afraid to diagnose and treat people that have negative tests, but if the treatment works (thinning the blood out) then the criteria is met! Take care and hope to hear from you before your appt
thank you for responding. im going bonkers over this. the vision problem is the worst. what sort of treatment exists for this? ive been taking baby asprin lately, dunno if that can/will do anything. im eager to see my nuerologist. i hope everything goes well because im really freaking out
Please try not to freak out- I am glad that you are seeing the Neurologist soon! The treatment for APS is by thinning the blood out with Warfarin (Coumadin). Some doctors will start an APS patient out with Heparin injections (of low molecular heparin- Fragmin is the name of it) for two weeks and then switch them onto Coumadin. I know that with me, 2 days on the Heparin injections and I was back to my old self! My headaches were gone, my brain fog was gone and my memory improved instantly. I had a numb tounge too that got better with treatment too! It was DRAMATIC! So if you do have APS then Coumadin is the best line of treatment (with Heparin to start). I really hope that the Neurologist can test you soon.. this does sound like APS To me. Has anyone looked in your eyes? If not, I would suggest going to an Optometrist, Opthalmologist or even your GP to see what is going on in your eyes. If they are inflamed or have clots then that is what is causing your vision problems. If they do say that they are inflamed and call it Optic Neuritis that is when they lean towards Multiple Sclerosis. BUT chances are that you DONT have MS! APS can cause Optic Neuritis and other symptoms very similar to MS! Please take information for your GP and the Neurologist on APS. That is the best way to educate them if they do not know about APS. The important thing to remember too is that you can have APS and NOT have the positive blood work. THat is what makes it a living hell to get diagnosed. I hope that this helps, and if you are really scared see about getting to an Optometrist, Opthalmologist or your GP tomorrow and see whats going on in your eyes. Take care
I saw the neurologist today. He is leaning towards MS (go figure) or Lupus. Im getting a MRI and EEG in a couple days. He did tons of weird testing looking at my coordination and my eyes etc, I did all. Geez my eyes are really bugging me, I see glare on everything. I also got an EKG because of the stong sensations of my heartbeat in back of neck and my pulse fluctuates. I am having some chest pain, the doctors (saw two today) think its cause i keep getting nervous and hyperventalating. I had these incredible chest pains in december. It felt like a big hand was reaching inside me and squeezing. Didnt respond to albuterol or anything else. EKG, Bloodwork, everything always came out normal. What really ****** me off is i was diagnosed with lupus almost 13 years ago, and the doctors just blew it off like it would never effect me. If it is causing problems now I just wanna feel better.
im freaking out. i got online last night and tried to diagose myself. so i look up pressure behind eyes, and neck pain. anuerysm pops up...i almost passed out last night i was wigging out so bad. im shaking, cant eat. cant think straight. getting the mri tonight at 7:45. i guess i keep reassuring myself if i had anuerysm id be dead by now since symptoms been going on since sep. but they were brought on by wrestling/injury. im scared. keep crying. i cant calm down.
Newbie, hello, it sounds to me you have several different medical problems and issues going on. If you have health insurance, I would go to my family doctor and have him do a complete blood work on along with catscan, mri, of the brain and any other body parts that hurt. i would also let him do a thyroid test because low thyroid levels can cause a person to be cold and sluggish with thinking. I would also let the doctor know you think you have lupus because he may want to check liver and kidney function. I have RSD and I was checked for lupus prior to them giving me a rsd diagnosis. You will have to find or be referred to patient neurologist, I don't know what state you live in but in PA- Drexel hospital-mcp has the best doctors there. good luck,
The MRI will certainly help to rule out aneurysm, brain tumor, etc., and it will show if you have any lesions, plaque, or abnormalities, or not. If your phys. thinks you have MS, are you getting a lumbar puncture to test the CSF fluid?
As Angelic encouraged you, and I know that you mentioned no health insurance, please see an ophthalmologist (Eye MD) instead of the optometrist. The ophthalmologist is an MD and trained to watch out for inflammation and refer you to the appropriate physician. The neurologist is the appropriate specialty for the inflammed eye.
With your history of Lupus, it is possible that your optic nerve is swollen and/or that you may have an eye occlusion (blood clot).
With regards to health costs, let your providers know you have no insurance. Some providers will automatically reduce their fees for you. Once you receive billing from labs and imaging providers, etc., contact them right away with regards to your situation. Ask them to consider accepting the allowed amount that a health insurance, i.e., Blue Cross would give them (even tho you don't have this coverage, providers who are members with BC accept the allowed amount as payment in full. The allowed is less than the billed. Ask for your bill to be treated as same. The provider can figure out what the allowed would be had it been processed by BC. This will help you). Many providers are open to this and will reduce their fees. If you can, be willing to offer a consistent monthly payment. Be sure to consistently pay each. If you don't have success on your own with this, many physicians are willing to contact the labs/imaging providers to negotiate a reduction for you! Keep that in mind!
Last edited by californiasunflower; 04-28-2004 at 10:56 AM.
well the MRI results were negative according to the radiologist. My neurologist still hasnt looked at them and wont look at them until i come in for a followup. Id im trying to sort that out with my work. I just started a new job but ive already missed 4 days. My insurance starts on april 1st, gotta try and hold out till then.
Alot of my symptoms have gone away some. My vision is balance issues are alot better. But im telling you, it seems like when 1 thing goes away another comes up. I was sitting in my chair yesterday and when I stood up, it felt like shards of glass were stuck in my feet. I rubbed my feet only to discover there was no glass. its been like that since. Constant tingling like glass or cactus thorns are in my feet (it hurts), and a pain that radiates to my calfs.
This **** never stops. after my follow up with the nuerologist, Im just gunna see a rhuemetologist from now on. im so tired of this. 25 and i feel like im 60. I just want some answers, not the run around. I need to find a good rhuelmetologist in the D/FW area that specializes in lupus
Neurologists are good about following up with the patient and their MRI results. Customarily, they schedule an appt. to advise you of the findings and will most likely have the actual films there to show you. Glad you'll be eligible for health insurance! Hang in there until your eligibility date and ask your neurologist about a referral to an excellent rheumatologist!
The eye can change all the time so still have it checked. The neurologist is skilled to shine a light into your eye to detect any inflammation. So if you want to save a step before seeing the Eye MD, ask the neuro to look in your eye for swelling of the fundi.
Last edited by californiasunflower; 04-28-2004 at 10:47 AM.