I appreciate your kind thoughts but they are completely useless advice.
Going to the ER is a fool’s game and the hours you spend there are wasted money for both you and your insurance unless you have an obvious cut that needs to be stitched (even there you may be taking your life into your hands.)
I had endometriosis for years suffered 18 periods “non-specific” proctitis" (bleed like a pig from my lower intestine) and went often when the horrible cramping and intestinal blockages would get bad. (I actually asked over the years “Do I have endometriosis?” and was told no. After the surgery I asked again and the gyn doctor told me "No you had fibroids that grew out of your uterus. I told this to my primary and he told me that was semantics as endometriosis is fibroid tissue grown outside the uterus.) Over the year at the ER I would be patted on the head given some Darvocets and sent home except for the 3 times they performed a DNC (I was bleeding so badly they thought I was losing a baby - I was not.) Recommendation - “see your own doctor.”
I’ve suffered cheap clinics and specialists after my near death car accident in 67 (where a drunk priest took off the passenger side of the car in which I traveled as he entered an exit on 287 NJ.) I’ve gone since 1964 to orthopedists complaining that my knees locked and gave out (one time when I was almost 9 months pregnant) and was told I was fine continue my aerobics don’t bother with the knee brace that you think makes it less painful - it’ll cut off your circulation.
I was told my gyn problems were small fibroids that would shrink as I reached menopause and there was no reason for my constant PID that they could see. In 1997 I was told by a new gyn doctor (my family doctor whom I loved had left and he had been doing my PAP tests for years so I didn’t have to bother with the cold specialists) that “If it’s giving you so much trouble you might as well have it out.” (Meaning my uterus). “After all you don’t need it anymore.” That took me by surprise but I kept have abnormal bleeding and I was in so much pain I agreed a year later. I woke up after 8 hours surgery and 2 transfusion to a sea of apologies (verbal only) to me and my daughters for not knowing how bad my condition was. I was kept for a week and went home with agonizing pelvic pain which crippled me today.
I have been through rectal retraining (which didn’t work) rectal surgery (which worked a little) countless scripts for laxatives (which make me bloat up as the rectum is in constant spasm and won’t open) which give me sometimes days of cramping until I become totally incontinent. Going to the ER when I had severe abdominal attacks was stupid enough as I have gone through gallons of 'GO LITELY" (has anyone seen the humor in this name) Mira-lax and some new thing that made me lose stool like water with accompanying pain.
At the same time all of this was going on I was nursing my younger two brothers with similar symptoms (one dead 59 went to bed with tranquilizers they offered him - the other on probably his 12th cervical surgery with some specialist to "clean out disks’) and fighting my own continuing muscular problems which were diagnosed first as fibromyalgia ungraded to “need new knees” “hyper-motility” “cuff tendinitis with an extensive distal interstitial delamination tear” (rt shoulder) Bursitis tear left shoulder “otietis pubis” (inflammation pelvic ligaments which would explain lot of the pelvic pain and rectal spasm.) I bring all this up because I have suffered for years (especially after the care accident in 67 where I injured my neck and back fracturing my skull and hip) with muscular problems that were similar to those of my grandmother who was diagnosed with rheumatoid arthritis although she was negative for the blood test rheumatoid factor. In the last few years it seems to me that, aside from the scar tissue and gyn symptoms, most of my symptoms have been increasing muscular spasms and the relatively new inability of my calves to stop cramping and the coldness of my feet and lower legs is all connected. My primary thought it possible and so the referral to the neurologist. I still think all my problems are basically muscular even though my bones are now affected.
But now not only is the neurologist saying it wasn’t neuropathy that the tests are negative (both of these things I could understand) she is telling me to take 3 colace a day and 1 Enteric aspirin for pain. What she is saying in, in fact, that there is nothing really wrong with me and that I have no real pain.
Over the years I’ve been treated for all sorts of immune problems, mysterious rashes, pain and respiratory symptoms (developed pleurisy once after refusing tranquilizers from rheumetologist who told me I was fine waiting 3 months til I couldn’t stand to see my primary and be diagnosed. Found out then that back pain is not just symptom of bad back but of pneumonia - took months to recover in 2001) I am sick of it all.
I’ve had my teeth butchered by clinic dentists as a teenager lost teeth later because dentists didn’t diagnose underlying jaw infection and didn’t believe I was in pain. I’ve suffered an abcessed foot that had to drain a month because a resident taking my primary’s place when I stepped on a piece of wood told me I was fine and the 1 1/2" of wood that was in there was in my mind leaving me with a week of agony.
My cousin Karen like a sister to me was sent away from an ER at 61 told she was having an anxiety attack and died 3 days later of an embolism (they sued successfully)
My brother Chris was diagnosed with bleeding ulcers and never given meds for stomach and bled to death a year later in St. Vincent’s hospital where they were demanding he leave after 3 days even though he couldn’t stand up and where they put under “cause of death” “natural causes.” (I got real cause of death from Funeral Home who cremated him which stated he “exsanguinated” due to duodenal ulcer. He was 59 and I did not sue because who cares about an older useless Aspergers’ poor person who can’t talk well for himself and whose deteriorating health situation his older sister didn’t recognize as she was fighting her own personal battle with her doctors and the doctors of her youngest brother who was having a neck fusion (which didn’t work.)
My nerve pain and problem walking got so bad one year (2007) my daughter took me to Methodist Hospital in Brooklyn where they kept me for a week and did x-rays of spine and hips and put me on lidoderm patches, methadone, percocets, Lyrica, Nexium, Celebrex, Robaxim, Cymbalta and had me see a psychologist. I was doped up to the eyeballs but still cried in pain if I had to stand up (pelvic pain and spasms front of thighs.) I still have copies of all these medical scripts as I never filled them. I willingly accepted the drugging as long as I was in the hospital and just slept hoping they would find something they could treat but when they sent me home with these scrips and note to “resume normal activities” I spent 3 days freezing, sweating and detoxing from this nasty drugs at my daughter’s home. And all those drugs did not completely stop the increasing muscular pain and spasms I was suffering.
I don’t know if my problems are rheumatoid (my rheumetologist told me he suspected something “rheumatoid” even though I test negative for the factor and prescribed me the one drug that does work for the pain which is prednisone) or a compilation of trauma to the body. What I do have is horribly painful shoulders for which I am told the answer is probably shoulder “replacements” as my shoulders are now in such bad shape. What I do have now is pressure on my spine where a spur is increasing in size and for which I was suggested surgery might be indicated. (This is not an answer for me but, because I needed a neck doctor’s approval for my knee replacement last year I went for an MRI and a neck doctor who told me the MRI was too muddy to read. I just found another knee doctor who didn’t care about anything but my knee and had the surgery done.
The surgery was fine but the stay in Mt. Sinai - 3 days - and post op care were pathetic totally different than the care I had received in 2002 for the other knee.) What I constantly have is constant often agonizing pain and muscle spasms that prevent me from picking up objects (I tend to drop them) bend over, stand up straight and the unkindest cut of all the new frozen calf muscles that make my legs like sticks when I try to walk. If I can get to a pool where the water calms the nerves down I can swim laps and I have some slight improvement but it is not like in 1997 and I lost my left leg completely for three months (this was after the hysterectomy and post op nerve pain in groin) where I did recover the ability to walk and return to work until I was laid off a year later.
I’ve rambled on and on here as I tend to do in life but I just want members to understand that today’s medicine is disgusting and based on profit alone. It has never been great but one did use to have a family doctor who knew all of you and who had more than books and other back-slapping peers to ground him/her. I am completely devastated by this neurologist’s visit and see my case as totally hopeless.
Internet sites such as these probably provide some function and I know when I started reading the Pelvic Pain Site I felt better as I saw my symptoms were not so crazy and I hoped that it might spur some action to find remedies for that particular pain. But I see that this is not going to happen and I am in despair.
I have spent hours in a city van going back and forth to doctors and listened to all sorts of stories and I hear dozens of stories worse than mine of doctor arrogance misdiagnosis and worst of all the fact that many painful syndromes have no answer a person must live with it even if they can no longer function as they once did. These are stories of poverty and humiliation and all I see is that the situation is getting worse.
I am watching my oldest daughter go for hours to the ER to be told she has some kind of inflammatory muscle cysts back of her knees or she has a flare-up of her pelvic problems due to fibroids. I watch her limp around still hopeful for some sort of answer, heating holistic stuff, going for acupuncture (tried that once - he had me on stomach head down in some sort of vinyl holed pillow legs straight out while giant massaging apparatus came down to massage my back. My neck was in agony and keeping my legs straight out lying on my painful pelvis was awful.) I don’t remember this older Chinese doctor who had a very successful practice in Manhattan did put any needles in my back. The whole thing was so painful and $150 to boot that I’ve put it out of my mind.
I am trying to accept that I will lose my legs completely that I can no longer paint my portraits, carve my sculptures, or play my guitar. What I cannot accept is being dismissed, humiliated and charged by those who say they are there to help you and who get quite nicely paid and rarely sued despite what they say (I also spent a few years as a young nurse’s aide and can tell you stories that will verify this. If there is a “blue wall” for the police there is a “white wall” for doctors and health services. Quite frankly I hope for all the people who join this site there will be an answer for them personally but I think there is nothing for me to come but more pain. I despise all organized religion, don’t like sports (other than the swimming, biking, skating, dancing I could once do) and my family has drifted apart between ill health, depression and poverty. I haven’t met a psychologist yet who had a rational practical answer for my life’s or my family’s life travails, other than to hold a hand. The money that is out there is to make more money and health is a much bandied about profit making venture where “Wellness” is stressed and those already caught up in chronic illness are brushed aside and patronized by the newest cover of AARP magazine that shows that all is possible despite the wrinkles and scars. “Preventive Care” is stressed where medical profits are unparalleled and risk free. What’s easier – being a scolding nanny to healthy adults and lecturing them on their eating and sexual habits while piling up those monies from regular visits for the initial examination the test giving and the follow-up (which most of the time doesn’t require a patient to go to the office and wait the hours but could be done over the phone) or treating someone with chronic complicated problems where they might get hostile and sue?
It’s insulting – it’s humiliating and it’s hopeless. No one is going to really give an answer and I dread the future.
