Please look at my symptoms, and tests. Tell me your opinions PLEASE. HELP!!!!
Not knowing what is wrong is so very frustrating to me. Let me go from head to toe the best that I can to give you all a run down of any symptoms or issues that I have had for many years. If anyone here reads this,and anything sounds familiar to you or if you think all of this may be related to ONE issue alone, PLEASE oh PLEASE let me know. I know that we are not Dr's, but I have learned that through research online and through networking-we can give each other a lot of input to one another when we feel as if we are hitting a brick wall when trying to find answers within the medical community. Perhaps I need to see a different type of specialist. Right now I am mainly seeing a neurologist for everything.
*Horrible headaches. They say migraines, but I say worse than that at times. With some I get disoriented with them. My vision gets blurry, I can't think straight, hands shake,hands&legs will get numb but just like that I will get better. Other times I will get what I call my "normal" migraines, which are bad enough.
*Brain fog at times(IE:I forgot my own address one day)
*balance problems(I run into the walls a lot, or I trip over my own feet on flat surfaces)
*Dizziness
*Vertigo
*Ringing in my ears
*Blurred or cloudy vision
*Pain behind my eyes at times
*Seeing black spots in my vision, WITHOUT headaches
*Neck pain
*Very tight muscles in my neck/shoulder region
*Upper back pain with burning/shock sensations at times
*Numbness/tingling in my arms, hands and fingers
*Tenderness in my kidneys
*Previous kidney infections & kidney stones
*History of elevated liver enzymes(I am not a drinker for that to be the cause)
*Bowel issues(IE's:Not able to control my bowels on occasions, and I have accidents on myself-loss of bowel control. Also loose stools, even when I have not had a bite to eat in hours.)
*Bladder issues(Recurrent UTI's,Cystitits-Cystoscopy in 2000-Had polyps removed along with the lining of my bladder scraped, pretty serious infection. 24 hrs of silver nitrate treatment completed with a nights stay in the hospital)
*A lot of what I would call tightness under my ribs on both sides at times
*Hip pain, especially on my right side
*Buttocks go numb, even when sitting on comfy couch. I have to move around a lot.
*Horrible pain in both knees(arthritis)
*Numbness from knees to toes
*Feet go completely numb pretty often
*Horrible shock pain in toes, especially when I am walking-sometimes they do it when I have my legs propped up on the couch doing nothing at all.
*Heart palpatations(I feel as if my heart is racing, skipping a beat and that it is going to pound out of my chest)
*A lot of times at night when I close my eyes I see these flashy waves of white lights when I have no headache what so ever.
*My neck and head will get so,so,so hot. I do not sweat, but they are so very hot. I will take my temp, but no fever. My blood pressure is normal, thyroid normal, hormones normal, glucose normal, B-12 normal all of those things you would think would cause this to occur.
*Tests so far that have been normal. Brain MRI-Normal. 25 min EEG-Normal. VNG-Normal. CBC-normal. Glucose-normal. B-12-normal. Thyroid-normal.Blood pressure-normal.
*What I do know so far......CT scan-vessels are diminished in size for someone of my age-38. Positional portion of my VNG test-Abnormal in all positions where vision was not present. Showed a left beating nystagmus. ENT Dr. said my vertigo however is NOT caused by something inner ear. Neuropathy in arms & hands per EMG/nerve conduction study. Also diagnosed with neuropathy of the legs & feet in 2008. Diagnosed with syncope/near syncope and orthostatic back in 1999.
*No specialized blood tests have been run so far such as an ANA test. No lumbar puncture has been performed to date. No spinal or neck MRI has been performed.
*Right now I am only on topamax of 25 mgs. 2X per day, but that is expected to be increased at my next visit, which is scheduled for the 7th of June.
*In the past I was on ultram for pain, flexeril for my tight muscles in my neck/shoulders and neurontin for the neuropathy of my legs/feet but as of yet my Neurologist has not mentioned putting me back on any of those meds.
Looking at the BIG picture here, would any of you say all of these things are possibly connected to one thing? I kinda think so. I am thinking auto immune here, with Lupus being the main thing jumping out here at me. If anyone with lupus reads this, would you suggest that I go ahead and make an appt. with a Rheumy Dr.? I have a PPO, so I do not need a referral from my PCP to see one. Maybe they will send me in for the specialized testing needed to either diagnose it or rule it out. I just need to know, that's all. Nobody should have to live a life in agony not knowing what's going on with them, and I have done this for years going through so many tests and even surgeries(As with the bladder issues). Only problem for me is I see that prednisone is a biggie given, and I can not tolerate that drug well at all. It made my headaches even worse than they already are. That is why I am on topamax right now. I get them so bad, that I cry and they got even worse on the prednisone.
*Horrible headaches. They say migraines, but I say worse than that at times. With some I get disoriented with them. My vision gets blurry, I can't think straight, hands shake,hands&legs will get numb but just like that I will get better. Other times I will get what I call my "normal" migraines, which are bad enough.
*Brain fog at times(IE:I forgot my own address one day)
*balance problems(I run into the walls a lot, or I trip over my own feet on flat surfaces)
*Dizziness
*Vertigo
*Ringing in my ears
*Blurred or cloudy vision
*Pain behind my eyes at times
*Seeing black spots in my vision, WITHOUT headaches
*Neck pain
*Very tight muscles in my neck/shoulder region
*Upper back pain with burning/shock sensations at times
*Numbness/tingling in my arms, hands and fingers
*Tenderness in my kidneys
*Previous kidney infections & kidney stones
*History of elevated liver enzymes(I am not a drinker for that to be the cause)
*Bowel issues(IE's:Not able to control my bowels on occasions, and I have accidents on myself-loss of bowel control. Also loose stools, even when I have not had a bite to eat in hours.)
*Bladder issues(Recurrent UTI's,Cystitits-Cystoscopy in 2000-Had polyps removed along with the lining of my bladder scraped, pretty serious infection. 24 hrs of silver nitrate treatment completed with a nights stay in the hospital)
*A lot of what I would call tightness under my ribs on both sides at times
*Hip pain, especially on my right side
*Buttocks go numb, even when sitting on comfy couch. I have to move around a lot.
*Horrible pain in both knees(arthritis)
*Numbness from knees to toes
*Feet go completely numb pretty often
*Horrible shock pain in toes, especially when I am walking-sometimes they do it when I have my legs propped up on the couch doing nothing at all.
*Heart palpatations(I feel as if my heart is racing, skipping a beat and that it is going to pound out of my chest)
*A lot of times at night when I close my eyes I see these flashy waves of white lights when I have no headache what so ever.
*My neck and head will get so,so,so hot. I do not sweat, but they are so very hot. I will take my temp, but no fever. My blood pressure is normal, thyroid normal, hormones normal, glucose normal, B-12 normal all of those things you would think would cause this to occur.
*Tests so far that have been normal. Brain MRI-Normal. 25 min EEG-Normal. VNG-Normal. CBC-normal. Glucose-normal. B-12-normal. Thyroid-normal.Blood pressure-normal.
*What I do know so far......CT scan-vessels are diminished in size for someone of my age-38. Positional portion of my VNG test-Abnormal in all positions where vision was not present. Showed a left beating nystagmus. ENT Dr. said my vertigo however is NOT caused by something inner ear. Neuropathy in arms & hands per EMG/nerve conduction study. Also diagnosed with neuropathy of the legs & feet in 2008. Diagnosed with syncope/near syncope and orthostatic back in 1999.
*No specialized blood tests have been run so far such as an ANA test. No lumbar puncture has been performed to date. No spinal or neck MRI has been performed.
*Right now I am only on topamax of 25 mgs. 2X per day, but that is expected to be increased at my next visit, which is scheduled for the 7th of June.
*In the past I was on ultram for pain, flexeril for my tight muscles in my neck/shoulders and neurontin for the neuropathy of my legs/feet but as of yet my Neurologist has not mentioned putting me back on any of those meds.
Looking at the BIG picture here, would any of you say all of these things are possibly connected to one thing? I kinda think so. I am thinking auto immune here, with Lupus being the main thing jumping out here at me. If anyone with lupus reads this, would you suggest that I go ahead and make an appt. with a Rheumy Dr.? I have a PPO, so I do not need a referral from my PCP to see one. Maybe they will send me in for the specialized testing needed to either diagnose it or rule it out. I just need to know, that's all. Nobody should have to live a life in agony not knowing what's going on with them, and I have done this for years going through so many tests and even surgeries(As with the bladder issues). Only problem for me is I see that prednisone is a biggie given, and I can not tolerate that drug well at all. It made my headaches even worse than they already are. That is why I am on topamax right now. I get them so bad, that I cry and they got even worse on the prednisone.
Replies
Of course I left things out.
*Extreme fatigue, yet I suffer from insomnia
*Sensitivity to light. My skin breaks out, and gets itchy. Not like a sunburn, but like a red rash.
*My eyes are also extremely sensitive to the light. I even wear sunglasses when it is cloudy outside.
* I have this form of eczema. It only comes up on my hands. It\'s these tiny little water blisters that get real itchy. I have a few places on my pinky finger right now, but the last time I had a huge patch on the top of my hand that stayed there for several months.
*I bruise easily, but I am not anemic. At least my Dr. didn\'t mention it, and I\'d assume that was something they checked when they did the CBC last month.
*If there is anything else that I can think of, I will add them as well in the comments here.
Post partum hemmorhage in 1990. Received 6 blood tranfusions
Pleurisy in 1990
Anemic from 1990 to 1996
Diagnosed with arthritis in my knees in 1991, but initially started having problems with right knee in 1985.
Vision issues started in the 2nd grade. Also told I had astigmatism.
Migraines started in high school
Black out spells started in the 10th grade
Problems with fatigue started in early high school
leg pain-life long
GERD-reflux disease. I have had it for years. I had a scope run up my nose and down into my throat a few weeks back. Was informed it is bad, and the acids are now up into my throat. I take prilosec daily. It does nothing to help.
CT scan shows possible pseudotumor and narrowing of the vessels for someone my age. Research has shown Antiphospholipid Antibodies, which does have a link to lupus but I still have no diagnosis. : (