New to Forum: undiagnosed
AnonymousSeptember 24, 2008 at 11:13 pm
Hi, everyone. I’ve been reading posts in the Forum for a few months now. I am undiagnosed. I have been suffering paralysis, severe pain, and many other symptoms since my last flu shot in November 2007. I am experiencing some recovery, but have had several relapses, one in late winter, and 2 this summer. I have all the symptoms of GBS, but after contacting medical staff half a dozen times regarding my condition, I got no answers or treatment from them, so I’ve been left to deal with it alone.
Currently, I am able to walk with a rollator outdoors and a walking cane indoors. I’ve had ongoing trouble with nerve spasms throughout my body, and muscle cramps–mostly in my feet and legs. The muscle weakness is constant, but I try to modify it with rest periods, so I can be strong enough to do things. I am a music teacher. I’ve lost about 2/3 of my former ability, but have retrained myself to speak and read again, although concentration, comprehension and memory problems persist. I have ongoing vision disturbances.
I’ve really appreciated the sense of humour on this site; it has done me a lot of good, and takes my mind off my troubles. I have the same symptoms as people here do, unfortunately, and can relate to what people say and how they feel. I am trying my best to deal with all of it, as I know you all do too. I don’t feel so alone now. I’ll write again soon. Bye for now.
AnonymousSeptember 24, 2008 at 11:36 pm
hi donna, my name is alice and i got sick in december 07, one month later than you. in my case i was diagnosed pretty early on with cidp — based on your post it might sound like you had a bout of gbs, not sure…
if you’d like to be in touch privately feel free to contact me. perhaps we can be of support to one another — i’ve been doing much better on a prednisone treatment.
to know my kind of beginning to end story, feel free to read my posts.
there may be some parallels between our conditions and support we can provide each other as i too was on a rollaider and worse, until i began my latest treatment of prednisone.
my membership allows contact by private messaging or by email so do feel free to contact me in either capacity.
hope you are doing well, having a good day,
AnonymousSeptember 25, 2008 at 12:10 am
Hi, Alice; thanks for the reply. I am just figuring out how to navigate on this site, so please excuse my errors; it’s all new to me, and electronic stuff always mind-boggles me. I’m glad that the prednisone is working for you. I use corticosteroids for asthma, and can’t use any more meds due to chemical reactions and allergies, and other medical conditions, etc. (gee, I’m boring!)
Have you been able to learn how to walk again? As for me, I’m pretty shaky at times, and if my rollator didn’t speak for me, I’d be publicly viewed as “drunk” when I’m out for a walk. But, being an outdoor/indoor type, I’ve just got to go outdoors sometimes, and check out the weather, and Mother Nature, and my favourite haunts, all with the help of my rollator, of course.
— Donna U.
AnonymousSeptember 25, 2008 at 1:03 am
Hi Donna, sorry to hear about your illness. From what I’ve read in your post, I agree with Alice as it sounds like GBS to me. I know GBS ascends, in other words, starts at the feet and gradually goes upwards. Did your paralysis start that way. There is another disease called Myasthenia Gravis, which I’m told can be similiar to GBS. I worked for 14 years in a health department and we gave 1000’s of flu shots. Guillain-Barre’ Syndrome, although pretty rare, is one of the risks of flu shots. We never had a case reported as a result of a flu shot given while I worked there, but that could be due to doctors/hospital not reporting adverse events like they are supposed to.
I can’t understand why doctors don’t recognize GBS. It took me 4 weeks to get diagnosed after countless doctor visits and several trips to the ER. If possible, I would talk to your doctor and see if he would refer you to a really good Neurologist. Correct me if I’m wrong posters, but a diagnosis of GBS is confirmed through a Nerve conduction test and/or spinal tap along with a really good comprehensive exam.
Hope this info helps you. Keep in touch and hope you get to feeling better soon!
AnonymousSeptember 25, 2008 at 10:41 am
Good morning Donna.
I was shocked it has been over a year and no doctor has had you tested for GBS. It sounds as if your doctor is going to a book on GBS and telling you what he or she has read. You carry all signs of GBS. Would you mind letting us know where you live. I feel 60% of the nuroligist know nothing about GBS. I have read where Neuroligist have walked out of a room and refused to treat a patient. Are you seeing a neuroligist. some of the best are connected with a teaching hospital. I have you in my prayers. I got my GBS from a flu shot. and many many doctors are not giveing a flu shot. also a flu shot only protects you from last years flu. I heard it said.(if it came from an egg walk away. Please stay away from flu,neumonia shots. (Steve)
AnonymousSeptember 25, 2008 at 1:18 pm
Hi Donna, Welcome to The Family. You need to get checked by a neurologist one who knows cidp/gbs. You say you have had relapses, it is more likely that you have cidp rather than gbs. Cidp relapses and remits, where as gbs usually doesn’t act like that without recovery in between. If you are comfortable posting what large city you are near, maybe one of the Family members or liasons can refer you to a good neuro. There are other ways to treat cidp/gbs, maybe you can get some ideas and go to your dr with a few suggestions to see if they will help you. Please feel free to ask any questions you have or just vent when you need to. Take Care.
AnonymousSeptember 25, 2008 at 2:44 pm
Thanks everyone, for your kind and understanding words. I’m not feeling well right now, headache all night, dizziness and sore eyes right now. To answer a few of your questions:
1. I live in Canada. I don’t have access or transportation to the kind of health care you do. My own doctor has offered no diagnosis or treatment. I searched for information on the internet, starting in December when I knew I was very ill. I got sick 2 days after the flu shot, and every part of my body was affected over a period of several months. I fought to gain control over every cramp 24 hours a day, so the crippling wouldn’t be worse.
2. Although it forced me to make out my will at the time, I decided not to die, and since that was God’s will too, I’m still alive now.
3. I did some things right, which have helped me to get better. They were/are:
– sleeping on a foam mattress helped me to cope with the icy cold in my body, especially my feet; a warmer body and bones helped me to heal
– drinking 2 gallons of milk every week, eating lean ground beef, lots of nuts and seeds aided the muscles; I have a constant craving for protein
– I drink a lot of coffee whenever the headaches are really bad; it acts as a diruretic and removes some of the excess fluid in my system, making the head pain diminish and making it easier to sleep
– I still do my housework and errands; I have no vehicle, and I gave up my license this winter because it was too hopeless to try to keep it in my condition; so I have to walk everywhere I go, getting water and groceries, etc., but I have the rollator now, so it acts as a cart too.
– When I get enough sleep at night, I feel better, but if I miss a few hours sleep, my nerves tingle more, and I have more muscle pain and uncoordination
– I had to take very good care of my feet: more padding in my boots and shoes, a tent over my feet while sleeping, in order to keep them warm and have less burning in the nerves. I still have foot-drop, but I am trying to concentrate more on lifting each foot correctly with each step I take.
– I still have trouble swallowing, the right side of my mouth still droops down, and sitting upright for more than a few minutes makes me slump, more so when I’m tired. Also whenever the town is spraying pesticides and herbicides, I have another relapse and lose the improvements I fought so hard to gain.
-My vision is an ongoing problem, with large white circles bobbing in the left-side of my peripheral vision; my hearing came back, though I lost it for a time (constant ringing and buzzing)
– For a few weeks, I had no knee-jerk when tapped, but that has returned to close to normal
– My veins have collapsed, so the medical staff had to take my blood tests from my upper elbow, and it hurt badly for weeks afterwards.
4. Not this, or anything else, is going to prevent me from living as full a life as I can. I am more interested in discussing fishing, or nature, or my other hobbies, than I am in discussing doctors and how they’ve failed me, and meds, etc. etc. Please don’t be offended; if you want to discuss these things, I don’t mind; I know it’s necessary.
5. Finally, those medical people who’ve dealt with me this way will have to deal with God some day, and so I leave them to it. That’s the way things are in my little town. We all know there are all kinds of doctors, like all kinds of people, and the world is not getting any better that way.
6. Last but not least, please don’t blame me or my country, Canada, for the state of my health, or the health care system. Other groups I’ve been on have done this, and it upset me so blastedly much that I quit them.
Anyhow, thanks for being there! I’ll write again. Sorry for my headache-induced grouchiness! This is my snarly side.
AnonymousSeptember 25, 2008 at 7:00 pm
I guess I am hardheaded but I feel you can get the help you need. 1st at the bottom of the page is GBS/CIDP Foundation International. Go there and fill out the information. hold nothing back. especially where you can get no trained help. Leave a way for them to contact you. again let them know how you have been treated and suffering.
When you are at the site filling out the info look for international directors. pick your country and then the province you are in. contact them. You can move mountains and I will help you start moveing them. You do not have to put up with the I don’t care attitudes of doctors. My prayers are with you Steve
AnonymousSeptember 25, 2008 at 9:33 pm
OK, OK, I’ve checked out the info at the bottom of this screen, and found a couple of interesting pages which I’ll check out in the next few days, health permitting. It remains to be seen how much that will help; I’m too far away from any place for a support group or the kind of medical testing I’d need.
I appreciate all the advice, but believe me, I know the health care system
of Canada well. If there was any help, wouldn’t I have it by now?
To date, I’ve seen the doctor twice and told him all about it, called his receptionist once and told her all about it, been to the hospital twice and told the receptionist and blood-work technician all about it, called the flu clinic back and told them all about it, told my sister who is a nurse all about it, told one of my music students who is a nurse all about it, told everybody who’s asked me all about it. As a result, I am exhausted and frustrated, and no better off than before. So I just get on with my life, and do the best I still can with it, and put up with all the pain and symptoms. Right now, I still have that terrible headache which has been bothering me for the past 24 hours; I’m worn out with it.
AnonymousSeptember 25, 2008 at 10:21 pm
Hi Donna and welcome. Have you done any research on the Miller Fisher variant of GBS? My symptoms started with my hands tingling and what my doc and I thought were migraines. Eyeballs hurt, sensitive to light and sound. Then I had no eye movement and my left eyelid started to droop. Went to Er and was seen by Ophthalmologist who brought in a Nuerology Ophthalmologist who said I think you have the Miller Fisher variant of GBS. It starts with the cranial nerves and goes down instead of starting at the feet and goes upward. Just a thought. Hang in there and best wishes to you!
AnonymousSeptember 25, 2008 at 11:05 pm
My reaction started in my head, with severe headache 2 days after the flu shot. I couldn’t sleep at all, the pain was constant and lasted several days. My vision darkened for a couple of weeks, and my hearing lessened to buzzing and ringing. At the same time, I noticed swollen glands under my chin, and I couldn’t chew or swallow without drooling. I had no sense of taste. No fever though. I felt very cold all over. all the time, icy spine, achy in all my muscles.
Then the cramps started on both sides, becoming more and more terrible; then the tingling took over, then the burning feet, then the terrible cramps in my ribcage: I had to tear the muscles apart with deep breaths,holding my breath as long as possible. I could hear sounds like Velcro tearing apart as I tried to breathe. It was my contracted muscle fibers around my chest being torn apart as I tried to breathe. But I stayed awake for the terrible hours of choking and pain and forced myself to breathe and hold my breaths so the contractions couldn’t immobilize me and suffocate me. I had some severe bowel and bladder incontinence at that time too. After that, the weakness and pain took over my neck, shoulders, arms, hands, fingers, back, hips, legs, feet. The contractions were constant, and I could feel my capilliaries and nerves activating one by one throughout my entire body, then worsening to frequent painful nerve spasms (several per minute).
As the days went by, I lost the strength and ability to walk or think, or speak or read. My memory has been affected; my concentration damaged; my comprehension impaired. This all took place over a matter of several months, and has only lessened somewhat as I started healing in spring. At various times, I attempted to get help from the medical staff, but they haven’t said or done anything to help me. I taught myself to speak properly again by reading difficult books out loud; my handwriting has improved to where it is now mostly under control again. I constantly correct my mistakes and try to retrain myself in every aspect of normal living. But I’m very weak, and in a lot of pain, and still can’t walk properly, and am usually exhausted, even when I just get up in the morning. I’m used to all this now, and am trying to cope with it. I’ve learned some coping skills, and best of all, I’ve learned that life goes on, except that everything’s different now, because I’m different. Thanks for asking, and for your kind concern.
ps: I forgot to mention that I am extremely sensitive to light and sound now, even for a music teacher. The sound of a spoon tinkling on a counter-top is enough to make to tremble for half a minute. Louder sounds make to shake for much longer. And I have to wear sunglasses outside all the time, and keep the rooms darkened indoors, because the light hurts my eyes.
I have to call it a day now; I’m too tired to correct my mistakes, and my head aches badly.
AnonymousSeptember 25, 2008 at 11:23 pm
I must say I’m in awe of you and your ability to heal yourself. And sorry too that you haven’t been able to get the help you need. I too drooled and needed medicine to help control it, couldn’t speak or swallow. Had to have a feeding tube inserted in my belly and speech therapy. Pretty darned amazing that you’ve “come thru” this on your own. WOW! By way of info, I take the following meds: Gabapentin 1800mg per day since about February 2008 for nerve pain and Alprazolam 1.5 a day for stress and muscle pain, which helped but I started recently to have really bad muscle spasms and pain. About 3 weeks ago I started on Baclofen 30mg a day and it has helped some. Sleep well my friend!
AnonymousSeptember 26, 2008 at 8:48 am
Now you’ve gone and made me cry. It’s funny, but when people are nice to me, I feel like crying, and here I am, bawling away!! However, when people are nasty to me I cry too, but I don’t tell anyone about it.
I’ve waked up with a headache again, so I’ll get some more sleep now because I have a couple of music students coming for a lesson this afternoon.
Bye for now.
AnonymousSeptember 26, 2008 at 11:46 am
Hello D.U welcome. I am so sorry you cant get treatment. I had gotten GBS in oct 2007 and treated right away with IVIG at U ofM hospital.Today I am back to work and doing well with only foot pain and cramps. I understand that GBS hits you hard and fast then the relaps part is your residules that act up(like my feet do). With what you call relapses (3) .Did you get worse during those times? To me it sounds like you may have cidp.You realy should get to a nuro and express your symptoms ,with a bunch of imfo in hand. This site really explains the diff in GBS and cidp. I dont know your situation with health care ,but I encourage you to get treatment for watever is ailing you.
AnonymousSeptember 26, 2008 at 2:00 pm
When reading your posts I am really touched.
Did you know that a lot of other autoimmune diseases can mimick GBS/CIDP?
I have not been on here for a long time now, but I come by now and then to check on my family. When I was undiagnosed I spent a year here with this wonderful family. It helped me emotionally and kept my courage up.
As it turned out I was diagnosed with another autoimmune disease, namely Hashimoto’s Thyroiditis or hypothyroidsim, and this disease is treatable.
The reason I respond to you is your symptoms of: headaches, being cold, crying and being emotional, loss of knee jerk and recovery, neurological symptoms as tingling in hands, feet and everywhere like electrical zapping, difficulty swallowing and breathing, tongue enlargement, eye involvement, concentration and thinking difficulty, etc. Well, I had all that and thought that I had CIDP as it did not leave me and I did not get better. I was dismissed from hospital with a comment that it was probably stress.
Thyroid diseases can be tested by simple blood tests: TSH, T4, T3, TPO antibodies, TSI antibodies, and other blood tests are sensible to get such as B12 vitamin, D vitamin and iron deficiency. That said it can be difficult to get proper treatment as so much ignorance exists in this world. Sigh! See this link on thyroid diseases and neurological symptoms:
However, it could be another one of the over 100 autoimmune diseases in the world, but if it is a thyroid disease you can actually die without treatment as the thyroid is shutting down slowly being attacked by antibodies.
I wish you luck finding a diagnose, and I hope that you have not given up getting help to find one.
All the best and God’s blessings!
P.S. I am well treated now, walking again and back to work full time. I will always have to watch my energy and not take on too much. I just love this link about managing a cronic disease: [url]http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf[/url]
AnonymousSeptember 26, 2008 at 2:16 pm
Actually, I have a diagnosed hypothyroid, which has been treated with meds for about 30 years, and is regularly monitored by blood tests. No, what happened to me is in no way the kind of irregular mild symptoms I experienced before I went on Levothyroxine for my thyroid problem.
What I’ve experienced is what I’ve always thought polio was like.
Also, I can’t get help or treatment from the medical staff; I’ve tried, and they are silent and indifferent, and offer no word of advice. The doctor simply took notes, and then he went on to his next patient. The next day, I got a note that they were taking their child out of music lessons. So, there you go! A couple of weeks later, I read in our local paper that the medical blood-work technician at the hospital got a medal for dedication and exemplary service. So there you go again! Nobody here cares about what happened to me, and about my condition now. They are used to seeing me stagger along behind my rollator now, instead of riding my bicycle as I have for the past 10 years in this town. That’s the way this town is. If I died right now, it wouldn’t matter; the medical people did this to me, so now they’re ignoring me for the sake of damage control. That’s the way things are done here.
AnonymousSeptember 26, 2008 at 4:58 pm
Donna, Can you get into Winnipeg? If I were you I would find a ride in and present at the ER there. (Well, not the one that just had that fellow die after sitting in the ER fo 34 hours.:eek: ) But there has to be one that would look at you. Small town dr.s and medical staff are not trained enough in rare disorders. They often don’t have the diagnostic tools either.
You need to go to a big center hospital. I am not sure what Brandon has but I would think Winnipeg is your better choice. You have to do this!!! You need a diagnosis so you can get proper treatment. It was only in having the chief of staff in our small town hospital step in and send me to Regina that I am alive today! My GP was much like what you describe. It is not about caring, I don’t think, but rather a lack of knowledge about what diseases are out there and a lack of knowledge/understanding around neurological disorders. Please make that trip!
AnonymousSeptember 26, 2008 at 8:18 pm
Jan, you’ve no doubt heard of triage by now. Manitoba has also recently come out with new guidelines regarding the use of emergency treatment rooms. The procedure is: the family doctor must make all recommendations.
The man that died in the Health Sciences Center in Winnipeg had a letter from his doctor stating that he needed immediate attention by a specialist because of his condition. He was not seen as requiring emergency treatment by the center staff, so he was left to sit in the waiting room, his condition worsening until he died there. The only recommendations that have come forth from this tragedy was that from now on the doctor or their receptionist must phone the HSC when they are sending a patient to them for crisis care. You’d think that the letter itself would have been enough, but obviously it wasn’t dealt with properly by the staff, because this man is dead. The same thing happened in Brandon not so long ago. That time it was a man with a heart condition, who died after waiting many hours in the waiting room.
Nevertheless, the emergency room rules have tightened, with no guarantee that a doctor will even see you there. They are only authorized to treat the cases in triage: immediately life-threatening and only within their guidelines. Cases such as meningitis would go through the cracks in the present system, many others too. And if and when you get to see the doctor there, they will just send you back to your family doctor, because he is the one who makes all referrals for specialized care and testing. I experienced this myself before, even with a doctor’s referral for asthma.
(As well, I don’t have transportation, except for my medical walker, and Wpg is many hundreds of miles away; my sister is a nurse and works in Wpg, but even she knows almost nothing about GBS, and couldn’t help me. She told me they only get the immediately life-threatening acute cases there, who are referred to a neurologist. She told me to go back to my doctor, but when I did he said and did nothing, though he took notes.)
AnonymousSeptember 27, 2008 at 7:56 am
No. There is another doctor here, but he has a reputation for getting angry whenever anyone tries to go to him for a second opinion. He remains silent, makes notes in their charts, and just tells them to go back to their own doctor. This has been my experience too, six years ago, when I had heart problems, and didn’t want to take Vioxx, which the other doctor wanted me to go on. I didn’t take it because of the bold-print warnings that it shouldn’t be taken by anyone with my health problems. My heart improved with a change of diet, but is weaker now after all of these GBS symptoms the past year.
In my opinion, we have a very high mortality rate in this town, but everyone is used to that. It’s mostly seniors, but also midddle-aged and younger ones too. One year, when the water was really bad, there were 5 death cards in one week at the post office. We usually have one or two per week in a town of about 1600-1800 people. I’ve lived here for 10 1/2 years, long enough to know this town and make these observations.
But hey, no one dares complain because if these doctors leave the town, we have nobody at all, and who’s going to refill prescriptions, etc. We have to be polite and bear it; and it’s true that they are over-worked, and maybe suffering burn-out. Sometimes, the people who can handle the run-around process actually do get the help they need, but they have to have a certain status, financial position, resources and energy to chase the health care system. I’m only a music teacher, though I have taught this doctor’s son for 2years. They are nice people, but he hasn’t helped me with my health problems and what more can I say or do?
I guess at this point that I have GBS, with some extra complications from regular mini-strokes, plus my other medical conditions. My understanding is that it takes about 3 years to determine the amount of recovery from GBS. The percentage rate of the syndrome’s effects are:
3 % mortality (usually in the immediate, acute stage, caused by tightened chest muscles and suffocation, 10 % quadriplegia, 20 % paraplegia, 67 % partial paralysis (nervous system and muscle system damage).
The last time I went to the hospital for a blood-test, the technician asked me what the doctor had said about my condition. I told her he said nothing. She said nothing more about that, but she did suggest that I needed a walker, not just my cane (which didn’t support me enough and threw me off balance). I had previously researched walkers, but they were too expensive. However, one of my music students saw one at a yard sale, and I ended up buying it (my rollator). It’s given me a new lease on life, because before that, I didn’t have the strength to leave the house very often, except to force myself to get water and buy groceries to be delivered every few weeks. But now, I can go out and about again, and it does me good, except when the town sprays pesticides and herbicides, which gives me a relapse. Oh well, this is the way it is.
AnonymousSeptember 27, 2008 at 12:02 pm
Hello Donna, You almost sound like someone who has gone through a war with post trumatic stress syndrome, If I was in your boots ,I hope that I would be a little agressive in pursuit of my treatment. Sometimes we cant see the forest from the trees. I sense a feeling of helplessness.I mean no disrespect, you seem very smart. I have always thought if there is the will you will find a way. My post is only to encourage you to find a way to see a different doctor.
AnonymousSeptember 27, 2008 at 2:20 pm
I had my prayers answered for you. Jan from your part of the country. Trust me people are trying their best to open doors for you but you are going to have to help them also. As I said before THINK OF DONNA NOW.You have people that you do not know that care about you, They are trying to get the proper help to you. Donna remember the mountain I mention. Well you and I and many more are now climbing it with you, Gods blessings are with you (Steve)
AnonymousSeptember 27, 2008 at 4:17 pm
Has anyone here read my posts carefully?
Don’t you realize that I have done my all, and it’s a done deal?
When you criticize me (for not taking action?), you are beating on a dead horse. It’s the doctors, the hospital, the system providers; they’re the ones that need to change. They hold all the power and they’ve made up their minds how to treat me, and this is the way it is. Dealing with them is like beating my head against a stone wall; I’m the one who is hurt, and they are immovable and impervious. Plus, I’m not forgetting that they hold power over me to discontinue all health services to me; and I do require asthma and thyroid meds on an ongoing basis. I’m already scared that someone will recognize my town, and I’ll be in trouble for speaking out about my case and other things.
I do not have an aggressive personality, and certainly no aggression to fight the system. I barely have enough energy to cope with these relapses, and recover enough to do my housework and earn a living. I’ve lost many of my music students, but still have a few, and it’s just enough income for me to live on. I’m lucky to have that, and I hope it doesn’t get any worse. If it does, I’ve saved some money to survive on for a while, I think.
The health system has changed so much that all the doctors are pretty much the same now–fairly hardened, often indifferent. You need to understand that the system you dealt with is not the same anymore, as far as priorities, or even the desire on the part of the professionals to render health care to the sick and injured. The strong survive and the weak perish.
There were 2 more death cards at the post office today. Everyone in town has been sick for the past few weeks, ever since the town sprayed all the trees with pesticides. This year the air has reeked with these toxins many a time, and there are always more deaths then. I know I’m having another relapse; my vision deterioration, constant headaches, burning, icy feet, more tingling nerves. I feel just wretched these days.
This year, I’ve tried hard to get a buffer zone around my residence, because 40 organizations in this town get permits for pesticide spraying, including the big organizations like hydro, railroad, etc. who do the large impact type of pesticide spraying. In spite of the fact that I had been awarded a buffer zone from the Manitoba government, the town actually sprayed my backyard trees anyway a few weeks ago; this is only about 15 feet from my residence. I’ve been dealing with this since, and got placed on a buffer-zone list with about 5 different organizations using pesticides near my residence. This will help somewhat; but what we really need here is a ban on cosmetic pesticides– the lawn and garden and tree pesticides that become airborne, leach into the water supply, poison the gardens and impact on other people nearby. Pesticides contain neurotoxins, among other dangerous substances; I did some research on this on the internet this winter. I will try to help others and myself this way. But there is no more I can do with these arrogant, hardened, careless doctors, so stop telling me to, OK?
ps: I do recognize and appreciate your kind concern; if you didn’t care, you wouldn’t have bothered to write. This site is a real life-line for me, so don’t turn against me, I am asking you sincerely. And don’t misunderstand me; it wears me out even more than I am already. Please don’t blame the victim.
AnonymousSeptember 30, 2008 at 6:16 am
Donna, I am sorry for what you are going thru. Canadian health care sure leaves lots to be desired! My own father has suffered needlessly because the system has written him off because of his age (euthanasia undercover 😡 )
My problem is not being able to get health coverage. We have lots of issues here in the good ol’ USA too.
I believe that everyone one replied to you from the best that they knew. Everyone really does want to help. It’s not criticism as much as suggestions from their own experience. We all recognize that “one size” doesn’t fit all. We really do want to be of help 🙂
AnonymousSeptember 30, 2008 at 7:35 pm
Hi everyone, I just want to comment here that Canadian health care is not always a bad thing that leaves a lot to be desired. We have issues here in Canada as do those of you in the US, or any other country for that matter. As in any profession, there are the good, the bad, and the ugly! It is really unfair of any of us in either country to generalize and say that the country’s healthcare is not good.
I have wonderful dr’s right now in my province/community and I know from reading the posts of many of you here from all our countries, that you have had great healthcare, great physicians. When a healthcare professional does not meet our needs, or get us the answers we want, then we need to go in search of a better dr, as many of us do. I personally refuse to throw up my hands and give in because a couple dr’s do not meet my needs. I am the one who is responsible for my health, not some stranger. Ron you said it…where there is a will there is a way.
We all get bogged down in our illness and it is then that we need to pick each other up, offer our care and support and even ideas as to alternatives. No disrespect intended. Donna, I am sorry you feel we are not reading and listening to your posts…quite the contrary. We are listening and we are trying to offer you some hope. I can only hope you find an alternative. I wish you the best in your recovery.
AnonymousOctober 1, 2008 at 9:46 am
Jan, the health care system of Saskatchewan, Canada is very different from the health care system of Manitoba, Canada. I have attempted several times to explain the situation in my posts. It’s no use for others to generalize, or judge. That just makes me feel misunderstood and even more stressed.
It is of no help to me, because it just adds to my heavy load of trouble, and I don’t want to have to deal with discouragement and depression too.
Judi Z., how’s your dad? I’m sorry to hear that the system hasn’t addressed his medical needs. Here in Manitoba, and in other provinces in Canada, some doctors have decided not to accept certain patients anymore: such as those with Alzheimer’s and mental health illnesses, etc. They see these patients as being too much of a problem for them. Many people don’t even have a family doctor, because the doctors are more selective of whom they want to treat. When it comes right down to it, we all have to do the best we can, and may God help us. Anyhow, have a good day, everyone; take a moment (at least) to find comfort and happiness in what God provides.
(My red mini-rose has a new bud–the last rose of summer. The leaves of the trees are gloriously golden, orange, red and green. And, when not polluted by smoke and toxins, the air is sweet, crisp and tangy.)
October 1, 2008 at 10:01 am
I am so sorry you are going through this. I cannot even imagine what it would be like to know what you need and not be able to get it. So many people here want universal insurance, personally it frightens me, even more now that I am aware of your plight and others on the site from other countries. I cannot even think of a suggestion short of moving to another area. Obviously that is not realistic. I will pray that some how you are able to convince a doc to help you. Regarding the pesticides, have you had heavy metal blood work done? Also, some people do have neurological disorders as a result of pesticides, have you been tested for those sorts of chemicals after a spray and then a flare following? Hopefully now that the winter months are approaching, you will see some relief w/o any spray.
Your final sentence about your rose was quite beautiful, you should jot down your thoughts in a journal. Best wishes that someone will hear you.
Dawn Kevies mom
AnonymousOctober 1, 2008 at 11:10 am
First off Donna, do you have a significant other, family member, or close friend you can confide in, that can help you stay afloat while you are trying to get thru your medical issues…
I have walked in your shoes regarding the frustration of not getting answers/treatment.. It’s hard enough sometimes just to hang in there physically, let alone emotionally. This is where my wife pulled me through…. I had about given up twice in the last year.. Once in October, when I first came down with this, and as recently back in January 2008.. I think my wife made all the difference in getting correct treatment and diagnosis.. So, #1 advice is if you are getting worn down with medical answers, don’t give up, find someone to go with you or call and persist on your behalf…
#2 Donna, I know you say you have done your all and it’s a done deal…. This is where I refer you to #1 advice…..
#3 Donna, I don’t know what to say about your environmental issues you are having… The easiest thing to say and hardest to do, is to just leave that part of the Country.. Not practical… Then I would somehow find a way to cope in your microenvironment.. Perhaps, like Dawn said testing yourself/the water/your environment for contaminants is a start.. I worked in the ag field, and have a degree in agronomy, so know a little about that stuff.. Remember, anything is toxic at a certain level… What you need to identify, is what’s wreaking havoc and avoid it…
I hope something here will help… I could add more, but perhaps I am missing the mark… Hang in there Donna, many of us have gone thru the same things, so you are not alone…:)
P>S> I couldn’t think of the word earlier… You need advocates on your behalf… We at this site can help, but in addition to yourself, I think you need a family member/friend etc.. that will be there with you making calls, seeing doctors, taking the initiative. etc… I think your sister (with a little prodding) could do more to get you referred to the correct people..
AnonymousOctober 4, 2008 at 9:29 pm
I’m pretty used to coping with my GBS now. My rollator has made it possible for me to get out of the house and do my errands, though I don’t have the strength for much else.
I just wish people wouldn’t stare at me, or act as if I’m invisible. I’m finding I have to train them to treat me normally. And then there are the ones that act as if my rollator is in their way, or my cane is in their way, or I’m in their way, when I’m going as fast I can, and I can’t get out of their way fast enough at grocery stores, or on sidewalks, or roads.
And when I have to sit down on my rollator seat to rest, they stop their cars and stare at me, never saying anything to me, mind you, just staring…staring…more staring. Then something comes over them, and away they go again. The other day, I was on my way to get the mail, and got too tired to walk, so I sat down and had a nap sitting on my rollator. People kept stopping their cars and staring, but I didn’t care; I just kept napping, and with my sunglasses on, how were they to know? And when I was good and ready, I got up and left. I see I will have to modify one of my favourite sayings: “Quit your swearing, swear-boy”, and change it to “Quit your staring, stare-boy”.
Anyhoo, it was a perfect autumn day: crunchy, golden leaves to shuffle through, a cloudless sky of clear, blue perfection, no skeeties, and yard sales!
I got an old black and white John Wayne DVD “Riders of Destiny’, among other things. So, it’s a western-themed night for me! Good-night, all!
AnonymousOctober 5, 2008 at 2:32 am
Hi Donna! I have a small story to share with you and welcome you to the site! There was a good movie on tonight and I was dying to watch it and am staying up late watching it but typing this at the same time. I took a nap this afternoon and overslept! I lived in Philadelphia region for a while and that was in the late 80’s. I got very sick with simular symptoms. The headaches were horrible and you sound almost like me many years back. It could be GBS but then it could be a very treatable condition. I went for 5 years from doctor to doctor and was getting super peed off because nothing was getting done. I was a hard to diagnose case! I got bedridden and wheelchair bound and could barely walk. My head was pounding! Funny you mentioned the Flu Shot! I had the Hepatitis B Vaccine back then and a few days later I got just like you. 5 long years I suffered and cried and was miserable. I did not want to give up and kept fighting with the doctors. Even wrote down my day to day symptoms. I even asked my doctor if he saw any labs abnormal. I wanted to know what his opinion was. Be brave dear and start asking! This is your life here you are dealing with! To make a long story short I got diagnosed with Central Nervous System Lupus and almost died! By the time I finally got to see a good doctor that would listen to me, I was pretty severe. When I did get diagnosed I was put in the hospital and given pulse steroids and cytoxin. I too have asthma. I know your frustration and feeling. I’ve been there and a few others have been there to! I do agree about the Healthcare system. I moved to NC 6 years ago and gave up my wonderful doctors that saved my life and actually went into remission but had a long time of recovering. My town has some aweful doctors that are a joke. I started seeing new doctors here and got sick again. Went to see a lousy Neurologist and she diagnosed me with a B-12 A Pernoius Anemia. Symptoms of that can almost mimic Thyroid and Lupus. Then I got sick again but had a back injury and they found Lumbar Spinal Stenosis. 3 disk repaired. Then after that surgery I had a massive attack on my nervous system. Those two lousy doctors that I was seeing in my town ignored me! I mean totally ignored me! I was so sick and they told me to go to the ER. Went to ER and they told me to see Doctor! Mad was not the word for it! I ended up going to the next town beside me in North Carolina and found a better doctor that did listen to me. Thank god he did! Told him all my symptoms and the testing began. He referred me to a Neurologist and found CIDP. I got some records and noticed that a CT Scan had a nodule in my thyroid. So I asked this new doctor that is trying so hard to see what is going on and he decides after I mentioned it to do an Ultrasound. Called the next day and ordered RAIU Uptake Scan. They found thyroid cancer and had to remove the gland along with my tonsils and lymph nodes. The biopsy and labs right before my surgery came back showing Graves Disease. I too had developed a MultiNodular Goiter with 5 nodules and all were different sizes. Growing kind. One was 14mms. It was the dominant one and was cancer.
I care about you okay! I really do care! System or no system! You find another doctor even if it means you have to travel. Have you had the TPA or TSI Antibodies done recently? You may need RAI treatments or surgery on that thyroid. What I am trying to say is don’t fart around! By experience when a person gets sick and nothing gets done we get depressed and then we want to give up. And yes we do feel like nobody cares. And in realty you are right. Only the sick seem to be the ones that care the most because we have somewhat walked in each other’s shoes! I’m going to tell you straight out and I’m not trying to hurt your feelings. It’s because I do care! You get your fanny in to see your doctor and you ask questions and try to get answers out of him and demand a referral to see a neurologist. If he refuses, then you go into the next town. Tell him you want another doctor in another town. When we are sick and feel so bad… I’m referring to me and I’m pretty sure the rest in here agree with me. I go through spells of pity parties! I start to feel sorry for myself and will cry and get all blue but then I bounce out of it! You have to fight the system my friend. Argue with them and keep on an bug the living s… out of that doctor until he decides to refer you to someone. You look in his face and tell him you are seriously sick and will die if you don’t get some help. If he does nothing then you call your Healthcare System and tell them what is going on and you need a referral to get seen because of what happened. Tell them everything symptoms and all and tell them you need a new doctor! Hon! Your life may be in grave danger here! Treating this yourself may be the wrong thing. A Pernous Anemia is bad and can cause nerve damage and not treated can cause coma and death. Even strokes! CNS Lupus can cause coma and death if not treated. CNS Vasculitis can cause Coma and Death. You might even have Graves Disease or a Nodule now that could be cancer. Alot of auto-immune diseases out there and many of us can get attacks on our nervous system and not have GBS! Your body may be sick but you still have a mind. Take that mind and be a fighter! Don’t treat yourself. You could end up for a big let down later. You might be getting better but then again you may be getting worse and just don’t know it yet because the second attack has not hit you yet! I had several attacks on my nervous system with Lupus all requiring different treatments! When they first diagnosed me at University of PA Hospital. I had several MRI”s too. I had white matter lessions on the brain and they said I had at one time a Cerebral Infarct. There was a Plexus Cyst on the brain. I was in bad shape! If I can be a fighter! So can you! You don’t give up! Start making calls and if you have to fight you fight. This is your life here! You decide what you want to do with it! Some autoimmune disorders don’t always show up right away. I had normal labs for 5 years and had Lupus. Write down every nit picky symptom! Rash, itching skin whatever you see. Including mouth ulcers. Anything you see you write down and give to that doctor.Ask questions and at the same time you tell you want honesty and want to know his real true opinion. You want to know what I have been doing all these years. Everytime I am in the ER or doctors office. I go back a week later and get my records. I’ll ask for my recent records. Then I come home and get online and look up all the abnormal readings. This gives me an idea how to approach my doctor on the next visit! He knows I have the knowledge medically on many things and can’t outsmart me! I hope this letter didn’t offend you. I’m only trying to help you in somehow getting a diagnoses. I wish you my best! Good luck on your hard journey that you are going through right now. Been there and know how you feel! Cheer up now! Because tomorrow you are going to be a fighter! Hugs hugs and more hugs heading your way!
AnonymousOctober 5, 2008 at 2:46 am
Ohh! If you need to IM me in the private massages and ask questions and need that support on a bad day! I am here for you! Don’t go diagnosing yourself and thinking it’s GBS. Mysthena Gravis can cause problems too! And can be typical in thyroid disorders. I am here for you anytime and want to let you know you are cared for in here and loved! What you think is GBS might be totally different!
AnonymousOctober 5, 2008 at 2:01 pm
Well folks, I must say that I know myself better than anyone here does. So, I’ll just go with the knowledge I have, plus my instincts, plus my actual circumstances, and let it go at that. Hope everyone here gets better, and God bless everyone in learning how to cope.
PS: If we all did what everything thought we should do, we’d end up like the people in the old fable–“carrying a donkey through the middle of town”.
AnonymousOctober 6, 2008 at 2:12 am
I don’t get your post. What do you want this forum to do for you ? GBS is nothing to play around with !!! You SOUND to me like, you came here looking for help on diagnosing the way you feel and telling us your symptomes. You have been given some GREAT advise that may help you, but then, you turn around and say there is no way you can do the things you have been told. I have always been told, ” Where there is a will, there is a way.”
Donna, again I ask…what do you expect, or want this forum to do for you ? You keep on doctoring yourself and you could wake up dead one of these mornings !Donna, this is one of my happy posts. 🙂
AnonymousOctober 6, 2008 at 8:08 am
I agree Drummer! Not a good idea to be your own doctor and diagnosing yourself thinking this is what it is when in fact it might be something totally different. GBS can kill and so can many other diseases. And it certainly sounds like she is not getting better but getting worse! And she just does not see it yet. She will end up either not waking up one morning and be dead or landing in the ER later on with a massive attack on her nervous system and then might get a diagnoses but because of not getting the proper treatment from the beginning it may leave her in a vegetable state.
I don’t know if you all remember the Terry Schiavo story a while back about the Husband wanting to take her off of her tube feedings because she was vegatative and the family was trying to fight him because they claimed they saw her trying. But doctors did not agree either with the family and they did away with her feedings. Really sad story! Terry Schiavo was walking around with A Pernious Anemia and was never diagnosed for it! She needed B-12 but her body landed her having a massive stroke causing major damage. She ended up in a nursing home the rest of her years. Was in her early 30’s and a very beautiful woman before she had the stroke. Something that could have been prevented landed her in the ER with a massive stroke and then to a nursing home the rest of her life. Needless to say that their are thousands each year that have strokes and did not have a B-12 issue but just had a stroke, so we can never tell our fate! I may be sick and have alot of health issues with me but I value my life and when it comes to my life and health, I don’t care how far I have to travel or who I have to see to get treatment! I’m not going to suffer if I don’t have too! Even if I did not have healthcare or money, I would be trying my best to get treatment. I will even argue with the healthcare system and have done so in the past. Even told a few off! And I don’t care if it cost me $100,000.00… oh well! You get your money when I give it to you! I don’t care if I have to pay monthly payments! Treat me and get me better! If I can go for 5 years undiagnosed and seeing doctor after doctor over and over again and not giving up hope, then so can many others. It’s called keeping your hope and maybe getting lucky someday and seeing yourself get better! You lose that hope and you might as well start preparing for your funeral!
I may never see that day happen! But I want to live! I want to grow old and see my grandchildren grow up and my great-grandchildren born and I want to have some achievements in life. I was brought into this world for a reason and when I leave this world I want to say to the world that at least I achieved something in my life! I might be in a wheelchair doing it but I am not letting myself go until I know there is nothing anybody else can do! When a doctor tells me that there is nothing else they can do for me! I will except it. But they sure are not going to send me home with nothing to ease my pain and suffering. I don’t think so! And if I can.. knowing these are my last days I will fight to my very last breath! Maybe that’s while I’m still alive today! The cat with nine lives and still won’t give in! LOL! We tried giving her support and the best advice we could! It’s up to her now to decide her fate! I just hope she choose’s that fate wisely! Something I have learned after being sick all these years! Give yourself 2 reasons why you want to live on this earth. Could be your wife, your children. I choose my children back then and I wanted to see my son graduate from high-school and see my first grandchild! I got to see both happen! Then I had to find another reason why I wanted to live! I wanted to see my children’s weddings! Got two down and one to go! And then I already have another reason why I want to live! To see more grandbabies come along. As long as I keep my mind focused on these I might get lucky and see old age creeping in!
AnonymousOctober 6, 2008 at 11:12 am
I did not come on this Forum to be diagnosed. I have only attempted to explain my situation at times whenever someone has asked questions.
I came on this Forum in order to research the site for information that I could identify with and would help me in my own situation. Many times I have attempted to explain my situation to others here, but mostly, this has been misunderstood. It is exhausting and frustrating to keep explaining to people who don’t know and who don’t understand.
I had hoped for some affirmation and intelligent communication with others who are getting on with their lives, as I am. The last few posts people have sent me here have been somewhat derogatory, causing me stress and emotional pain, and in no way helpful. I feel at this point that it would be best for the moderator to end this thread.
AnonymousOctober 6, 2008 at 11:34 am
Ok just so everyone is clear, this is a discussion forum. We can’t be giving out medical advice or diagnosises over the internet. It will get everyone in trouble if the wrong thing is said or the wrong advice is taken by someone reading our boards. With that said, take everything on this board as just that discussion.
I am now going to close this thread for further “discussion”.
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