Venting and Very Angry!
AnonymousOctober 12, 2006 at 11:06 am
I posted this in the Main also:
Lori, Thank you so much (I was researching in a link from fairly odd mother)…. I went to the link you posted and finally got the answer I have been searching for for over 10 years. It was 10 years ago, 16 years after onset, that I discovered that IVIG and PPS were being used as a treatment for GBS. Wanted to know when it was first introduced and cited in journal material as treatment. That was in 1978 according to your link study. (As I write this, I am very angry and crying…) I had GBS in Dec. 1979, at 18 (bad case) and my neuro at the time used prednisone in very high dosage as my treatment and told me and my family that this was the only treatment and went on to put me in an iron lung when my breathing failed. I thought my mother had been instrumental in the iron lung thing, but recently found out that it was recommended by Doc as treatment and gave her the excuse that then I wouldn’t have a trach scar. She agreed based not on the scar part, but treatment part. (okay,I’m getting madder by the minute.)The iron lung was rented from another hospital where it had been in storage for many years ( since the 50’s and the polio outbreak) and the leather strap that holds the head opening open ( as it would snap shut like a clam shell on your neck, if not for this very strap) was completely dry rotted and missing the grommets that support the latch. I sat and stared at this failing strap as it was right there 3 inches from my face, for 6 weeks, as it frayed more and scared me more. ( Now I no longer wonder why I get panic attacks and am very claustrophophic) With no way to communicate that it was going to snap other than grunts on the exhale (could not articulate, paralyzed mouth and face and probably vocal cords), I did not sleep for other than moments here or there for the 6 weeks.
After I was recovered and Doc was asking about it, I told him that it falling apart. They put it back in storage.
Now I find that I could have had PPS or IVIG and no iron lung, but a trach and maybe been spared some of the horror that has haunted me for 26 years. I am so mad, and so upset. I want to throw myself on the ground in a temper tantrum. Why didn’t he do his research, no prednisone, they knew it didn’t work by then. I have had persistent health problems related to high dosage long term pred use. TOOK IT FOR 8 YEARS!! at 60-100+ mg per day. Lost my thyroid, gained astronomical amounts of weight, hypoglycemic, bad lipid panels. God, I wish I could remember all of it, but most of all, I had Stomach cancer in 96 and 98 and they said it could very well be related to the pred use all those years. As it was precipitated by ongoing ulcers from the pred. God help me and all of us who got bad treatment and have had to put up with it for years and years and years.
After 26 years, I called this same neuro, still practicing and asked about my post GBS symptoms, said that he didn’t believe they existed, just old age (I’m 45, now) and that I couldn’t be having another onset as you get GBS only once. I swear, I wanted to castrate him. Still not doing his homework and almost more unforgiveable is the fact that I (HIS PATIENT) had had gbs twice, once in 78 and again in 79……….And he knew it!!!!!
I swear, by God, that I will do my best to educate not only patients and their families but the GD doctors who are playing god with our lives, if it is the last thing I do!!!!!!!!!!!
(Forgive me, Docs, who know of what they speak.)
AnonymousOctober 12, 2006 at 12:11 pm
oh my got nat!!!! i’m crying along with you right now. i had a similar problem with the first doc. did you meet with dr. tahmoush yet? last time we spoke, you had an appt. with your primary to get a referral. did you see him yet and tell him all of this? i have friends and relatives that i see often in the lancaster, lebanon and hershey area. i live right outside of philly. i’d like to meet you. i too am 45. i’m here for you, and as a fellow gbser, would like to reach out and help you through this process. please contact me at: [email]firstname.lastname@example.org[/email] or 215-943-0234.
AnonymousOctober 12, 2006 at 1:58 pm
i have read your post just now and i am absolutely appaled. you responded to my post on my frustrations about doctors, now it’s obvious to me you have something to be very angry about.
after the anger has eased off a bit (and you certainly have my consent to castrate the guy) do know that you are not completely powerless, because you really do help people with your posts. i know that from my own experience.
AnonymousOctober 12, 2006 at 2:08 pm
I whole-heartedly agree with Eva … your posts absolutely help others. Your experiences create a dilemna … I want to go beat up your doc, but at the same time I want to crumble on the floor and cry. My wife is a doctor (but one of the good ones) … but other than her (and Doc David) I hate doctors (yes, I am prejudiced … but at least with cause).
I wish you the very best. You are in my thoughts and prayers. I continue to be impressed with your amazing resolve to turn your experiences into something beneficial for others.
PS — As mentioned on other threads, if you (or anybody else) has questions for a fellowship trained Physiatrist (rehab specialist) with substantial experience treating GBS patients, let me know and I will pass on to my wife and then get back to you.
AnonymousOctober 12, 2006 at 2:50 pm
Natalie ~ I am so sorry!! I was not given treatment in 1994 and found out years later that help was available . . . Your anger is also grief. It hurts so bad to know that what was lost “didn’t have to be”. Let the hurts out so that it doesn’t work on your body internally. There are some very incompetent docs out there But some very caring ones (DocDavid) also. My son has chosen the profession (currently University of New England, Maine) so as to make a difference.
The Foundation is a wonderful resource but “we the people” need to become more proactive. This winter I plan to draft a letter to send to the physicians/ERs in my community for GBS awareness week in the spring. Since I never experienced PT, OT, etc. perhaps one of you in our “Family” could draft a letter for PT departments that we could send out. They’ve got to become aware that GBS is not like a stroke!!!
Nat ~ I hurt with you and shed tears with you. My prayer thoughts and many hugs are “winging their way” to you. 🙂
October 12, 2006 at 3:23 pm
I am in tears too. I am glad I was able to give you information you have been searching for, but I am so sorry it has upset you as well. *hugging Nat*
Judi, I too want to somehow inform the medical community about GBS! There are so many people who are misdiagnosed, misunderstood, mistreated and suffer long term problems because of unfeeling ,undereducated and misinformed doctors. I know GBS isnt the only problem they “dont know enough about” but by informing them of this it could open their eyes to other problems that are “rare”. Maybe we could somehow combine forces and get this information in front of them? I love doing research!
I feel for everyone here and those who have not found this forum yet. The fear we endure, the pain, the frustration. This has consumed a large part of my life since July and mine was mild! I can not imagine how all consuming it is for those of ou who have had severe cases! My heart and prayers are still with each of you.
AnonymousOctober 12, 2006 at 5:59 pm
My heart aches for you. What a terrible ordeal.
Have you thought about writing a letter to that idiot neurologist? Perhaps if you can tell him, in your own words, what you needlessly suffered due to his ignorance, it will make you feel better (since unfortunately castration is illegal…). By writiing you can calm yourself enough not to go off on him and lose credbility(sp), plus you have plenty of time to compose your thoughts.
It could serve as a way for you to vent at the very person who caused you such pain. It might even help any other GBS patients who are unfortunate enough to go to him for treatment by educating him a little bit.
It probably won’t be an easy letter to write, because it dredges up old feelings and bad memories, but I’ll bet you’d feel better afterwards.
Now that I think about it, that’s probably good advice for everyone who has suffered poor treatment at the hands of a medical professional.
I’m even going to take my own advice. I had some bad experiences with the first neuorogist who “treated” me when I got GBS, although certainly nothing even [U]nearly[/U] as bad as you suffered. His lack of knowledge and his actions resulted in pain and permanent damage from a relatively mild case of GBS that could have either been mitigated or prevented. He’s still ignorant of this, as I moved on to other doctors. I plan to change that by informing him, and enclosing some articles and REAL information about GBS.
Natatlie, please, please find a new doctor!! I’m sure you have already:)
Take care of yourself and know that you have support here.
AnonymousOctober 12, 2006 at 8:31 pm
Okay, I’m back and I think I’ve got better perspective now. I’ve been to the Tavern and I’m a little calmer. Talked with Scott, the husband, earlier and explained what I learned today about PPS and IVIG being available when I had my GBS (My 1978 onset was never dx’d) in 1979. His answer,” Well that just goes to show why they call it [I]practicing [/I]medicine. They really have no clue sometimes and we get caught in the middle of it. What did you learn from it?”(always asks this…sigh)
So I think I want in on the writing letters and getting info out campaign. I definitely feel that if the pain and suffering can be avoided they should be in every case….every case.
Count me in!
AnonymousOctober 13, 2006 at 12:09 am
Dear Natalie, you are a very strong person to have gone through so much anquish at such a young age and then to find out something could have been done in place of all the h–l you suffered. I admire your courage and my heart goes out to you. I also had a very bad experience with a doctor at Mt. Sinai Hospital, NYC. which I am paying for today with deformity and suffering. It was related to my myasthenia gravis in 1998. My GBS was dz May 2005. I have learned to question doctors. I was very depressed after the MG misinformation, I cried every night when I was released from the hospital (3wks intubated in ICU) thinking about it didn’t have to be that way. It was awful and the worse part was it could have been prevented if my doctor had not misinformed me. He put me, like you, on very high doses of prednisone, imuran and mestinon. The prednisone “crushed” the bone fusion for laminectomy (I had spinal stenosis and scoliosis) and also got to my hip(had to have total hip replacement) and eyes(cataracts).It makes me so mad!!!
Now I’m crying and mad about what happened to you. There is no comparison to what you went through. You are so young. We have to go on. As others in this group have said it is good to vent your feelings. In my case I was told to forget what happened and don’t dwell on it, which I was doing.
AnonymousOctober 13, 2006 at 12:20 am
Peggy ~ it’s never to late to grieve when one has never had the opportunity to do so. The mind has a definite need to do that in order to ‘move on’. These diseases have cost most of us a tremendous amount on ‘life as we knew it’. Plans and dreams have had to be adjusted and with that comes grief. We never ‘forget’ what happened, only hide it until we can bring it back out into the open and grieve. And for the mind’s and body’s sake, the sooner the better. It is good for us to grieve with Natalie and for our own losses. Hugs for everyone 🙂
AnonymousOctober 13, 2006 at 10:10 am
Forgetting about it doesn’t work. Did that for 20-some years and then got slammed with Post GBS because I wasn’t listening to my body. I think that not focusing so much is a better direction. Be clear about your intentions and goals, but don’t let it take over. Focused too much yesterday and shot the day to heck. Not going to lose another day to stress and worry. My clear intention is to learn from this and focus on a clear goal or intention. That letter writing thing is going to be my goal. But I will not focus on what has been taken from me, only on what I can achieve! Staying positive!
Love and hugs to you and all of who have responded and thanks for your support!
AnonymousOctober 16, 2006 at 1:18 am
So many nights as I try to sleep the thoughts hit me about BAD doctors and BAD drugs prescribed in error.I get scared-what if this all happened again……. How can someone go to the hospital/physician’s office having trouble walking and be told it’s anxiety??? We could all write a lot on our experiences.
I can relate to your anger-when I was correctly diagnosed I wanted to go break a chair over the heads of a few doctors. Precious time gone by that could have been in treatment.
To grieve is good-because it is a loss.My thoughts are with you.
October 16, 2006 at 8:48 am
That is exactly what happened to me Limecat…I could barely walk, couldnt stand on my tiptoes, had no strength in my feet or hands and even had a loss of reflexes in my left foot and my wrists (dang it hurts when they whack you multiple times!). And I was sent home with a Dx of serious anxiety problems. I was sent home to suffer alone. There were times when I felt I couldnt take a deep breath or swallow properly, and thought I would not wake up the next morning…begging my hubby to stay up late and keep an eye on me…I was so scared! The overwhelming fear alone was almost unbearable…the nights I woke up to go sit outside in the dark and cry and pray, the anxiety attacks it caused, and the incredible sense of being alone. If i didnt have anxiety problems before i certainly did after I went home! I forced myself to “get thru it”, forced myself to function when I didnt feel I could, forced myself to move my legs and feet even though I didnt know for sure if I really could, forced myself to stand at the sink and do dishes and fix dinner for my family. And then crying after reading about the many people here that have been misdiagnosed, treated poorly, and everything everyone has gone thru regardless of Dx and the time it took.
Doctors need to know more about this! And they need to know REAL experiences! Not just a book telling them a basic outline of what it is. They need to know about false negatives, pain, fatigue, emotional support, and bedside manners!!
AnonymousOctober 16, 2006 at 10:09 am
Amen Sister! And can I hear a Hallelujah! You are speaking to the choir and we agree 1000%! Funny about that original anxiety dx. When I first had symptoms, I went first to my family doc who sent me home to breath in bag because I was hyperventilating. Did that for 3 days till I couldn’t lift the bag to mouth anymore. Went to hospital, where my family docs group ran the ER and they sent me home again, no reflexes, not able to swallow anymore. Nexst day, parents took me back and resident admitted me because I was so dehydrated my tongue was cracked. Had not been able to swallow anything for 4 days. And could no longer stand. Guess he figured I wasn’t hyperventilating, but when group found out I was admitted, tried to undo it and send me home again. My mother freaked and finally got a neuro to look at me. He guessed what it was right away. The only good thing he did!
But I am thankful to him for that!
And now in my life, like you I have serious anxiety. Found that meditation and good breathing techniques and some alternative modalities help keep it in check!
Keep the faith girl! and Don’t let the dragons get you down!
AnonymousNovember 3, 2006 at 11:43 pm
Hi, I am new to the site. My husband had GBS 4 1’2 years ago. It was a quick onset within 2 days and he was total paralized and on a ventalator. He is left in a wheelchair and has little use of his hands.Luckly he has very little pain and his health seems to be ok. I understand what your frustrations are all about. We never had much help along the way and have had to deal with the trama and all that goes with it by ourselves. But I have learned one thing that if you hang onto the angry,and anxiety(Yes I’m have had many panic attacks and deal with deppression)you will only make it worse. We have to move on and take one day at a time or else we would go crazy. The medical field doesn’t know how to deal with GBS so they try to ignore it! When we feel down we try to do something positive and not feel sorry for ourselves brcause it won’t change the past.
Hope to talk to you again.
You must be logged in to reply to this topic.