Neuro’s have given up on me
AnonymousJanuary 17, 2007 at 5:57 pm
I went to the hospital yesterday to get my results from the EMG. I met a new neuro again, who obviously had not read my file properly. She told me that she closed my file as I had no neurologic symptoms as my main symptom was lack of balance and dizziness and the EMG was normal. 😮
I was very surprised I told her since I was admitted to hospital with pains and sleeping/pins and needles/numbness of right leg which spread to legs and hands and arms and a patch in my face and tongue. The last neuro read my diary and wrote that I had a sensory polyneuropathy, and proved e.g. my feet were numb to cold.
I asked (since I already knew and had read about it) whether it is small fiber neuropathy and whether the cause should be sought in thyroid, diabetes or other such problems. (asked gently I thought). She reacted angry and said that in her 37 years as a doctor she had never had a conversation go this wrong and not to be understood 🙁 She would not talk about SFN and asked my husband to intervene on her behalf 😡
My husband was lost in the discussion by then and was not sure what to do so he said nothing. When I pressed for an answer on SFN (asked 7 times in different ways), she said that no biopsies were taken in Denmark anymore. I could get on a short waiting list (4 people) in a remote part of the country if they ever did open for biopsies again. However she pointed out that taking a nerve sample would kill the nerve and give cause to extreme pain in the future, and that I would not want it. In order to calm her down :rolleyes: I said to her that it is very hard to wait without treatment and see so many different doctors.
Result: she sent me back to my GP to get sorted out. Obviously I need to go see an endocrinologist. Today I went to see my GP who has already taken blood tests for thyroid disease. My GP admitted that she did not know what the results meant, and luckily she agreed to send me to an endocrinologist. Experts are needed here! she said. I had to explain from my reseach and I gave her copies of my diary and documents from the internet.
My faith in doctors has fallen below zero, so I am not very optimistic about going to the endocrinologist and have to wait again. First symptoms from April – almost a year has gone with nothing but tests and waiting. I am spent and angry and feel powerless and I am not getting better but worse. I especially have difficulty in walking.
My question to you now – if you know – am I in the right forum here? Is small fiber neuropathy a part of this forum?
I don’t know what I should have done without you all in this time of waiting and frustration. You have been supportive and I have found courage from your experience to investigate on my own for answers.
AnonymousJanuary 17, 2007 at 6:28 pm
And so it goes on …… :confused: . I dont even know what to say to give you encouragement and … dare i say it? … hope. Unfortunately I tend to feel the same way as you do regarding faith in certain people. I know how long this has been carrying on for, and I DO know how frustrated you are. Please call me anytime you want to talk. Thinking of you!
AnonymousJanuary 17, 2007 at 8:09 pm
I am sorry that you are still searching for answers. Regardless of what your diagnosis ends up being, I think I speak for everyone when I say that you are part of the family now so yes you are in the right forum. I wish I knew how things worked there better so I could help, but I don’t, so I can’t. However if I can ever be of any help I hope you know that you contact me anytime. Take care.
AnonymousJanuary 17, 2007 at 8:31 pm
you are part of this family no matter what kind of neuropathy you have. I can understand how terribly frustrating und upsetting all this must be for you. It took me five years until I finally received the correct diagnosis. I can’t even remember how many doctors I saw here in Thailand and in the US. Diagnosis ranged from plain polyneuropathy with no known treatment to Parkinson’s. I am pretty stubborn and simply didn’t give up.
Hang in there, don’t give up.
AnonymousJanuary 21, 2007 at 10:14 pm
While I feel lucky to have found some very good doctors, I have been through a few that didn’t even seem to have the intellectual curiosity (maybe capacity?) to discuss the problems I was having. You are right to challenge your doctor for answers and I am sure that you will find someone who will listen and work with you.
From this forum, I have learned alot, and most of the people here probably know more about neuropathy and available diagnostic tests and treatments than most doctors.
Keep us informed, shared experiences are the best.
AnonymousJanuary 21, 2007 at 11:56 pm
I agree with the other’s that you are a part of our family, I don’t think anyone would say you don’t belong. It seems to me that your troubles are with doctors and not the fact that there is no hope. I was told by my first three neurologists that I had no hope and treatments would be useless. Then I got a computer, learned how to use it and found this wonderful family and started questioning things. I went through a total of eight neurologists, but two were for consultations and number six was my great one. I am no longer progressing and I owe that to an awesome doctor. I am doing great with the syndrome and if I can apply myself to exercising again, my potential to walk again is good. I lost my motivation due to stress.
Keep looking for the right neurologist, decide how far you can travel to see one. Perhaps you can find a neurologist who’s willing to consult with a really well informed one. In a worse case situation, are you able to make a move. I think that’s a big problem, some of us live in areas where there are not great doctors.
Above all, NEVER NEVER NEVER NEVER give up.
AnonymousJanuary 22, 2007 at 4:30 pm
Thank you for all your answers, my family 🙂
It has been some rough days where hope was hidden and anger absolutely dominant with tears close behind. Few have been able to listen to me venting, and I feel as if I have been taxing other people’s patience, and yet I have been unable to withhold my feelings, like an explosion or gale force each time.
I am seeing a new doctor tomorrow at 9.15, an endocrinologist, and I really hope and pray that I can talk to him, and that he will understand my need to know and work with him. I have to be nice and agreeable though my feelings are raw and need soothing.
Umm, I think that I demand too much of myself. After all I am on the right track, and I have found that track by myself with your help, my fantastic family 🙂
Thank you for listening and giving your support! I love you for it!
AnonymousJanuary 22, 2007 at 11:48 pm
I hope all will go well with your new doctor. It helps us so much if we find the right doctor. My most compassionate doctor, the one who I look forward to seeing, am most comfortable with and can talk to, is my podiatrist. I wish he was a neurologist. If a doctor is willing to learn about GBS/CIDP, research, listen to you, consult with qualified neurologists, I would continue to see him/her.
DON’T GIVE UP ON YOURSELF. We do have hope.
AnonymousJanuary 23, 2007 at 10:13 am
Today I went to see the endocrinologist. Quick consultation for 10 minutes. He said with one look at the tests that he could not help me.
[COLOR=”Red”]TSH: 5 (normal 0,2-5)[/COLOR]
T4: 89 (normal 60-160)
T4 free: 12.8 (normal 10-22)
T3: 1.9 (normal 1.0-2.6)
[COLOR=”Red”]Thyroid antibodies: more than 1300 (normal 0-59)[/COLOR]
When I gave him the article from AACE American Association of Clinical Endocrinologists on lowering [COLOR=”Red”]TSH references to 0.3-3.0[/COLOR] from 2002, he said that AACE has gone back to the original reference values since then. I have checked, and it is not true to judge from their website.
When I asked about antibodies, he said that all women have antibodies and that they don’t mean anything when the rest of the results are in the normal area. AND he said that all else that I could show him was probably just invented by the american lawyer woman who had nothing to do with real doctors and who had been misquoted all over the place. [COLOR=”Blue”]Can the American Thyroid chat forums really be that misled?????[/COLOR]
When I showed my diary of symptoms, he said that they seemed more neurological and not within his area of expertise. The neuro’s at the hospital have given up on me 😡
Well I left the place in tears. I had my hope up to high. He did not examine me at all, and he just told me to get a check-up with my GP once a year to see if there are any changes. But I cannot function now!
I went straight back to my GP, and asked what I should do. She said that my symptoms were probably just psychological. 😮
Luckily my husband intervened and said that it was a question about references. She reluctantly finally agreed to send me to a hospital again to be seen by the endocrinologic department which has a long waiting time.
I could choose to go to a private clinic but it is costly and without insurance. In Denmark you have to get referred in order to get insurance.
I had a chock today, and I have been crying a lot. I hope that I have been coherent in writing this.
Please give your thoughts, especially if you have had thyroid problems as well.
AnonymousJanuary 23, 2007 at 5:43 pm
I am sorry Ninus I thought I had thyroid problems but they seem to get better. My Thyroid antibodies was 250 and a few months later dropped to 150. I read that High Thyroid antibodies mean you have a High chance of getting thyroid problems. My TSH last May was 11.7 a few months ago it was 3.9.
My only reason I can think of my antibodies going lower is that ADHD medicine I am taking can cause a person to get Hyperthyroidism and since I had Hypothyroidism it’s probably balancing itself. Yes I also told my DR about the AACE website
Have you thought about taking natural products for your thyroid with your DR’s permission? Kelp pills or Armour?
I wish I could help you more
AnonymousJanuary 23, 2007 at 6:49 pm
I have a thyroid problem but I’m doing okay with it so I don’t know how much I can help you. I started with the thyroid when I was in my twenties (I’m 65) and I was really really bad, you name the symptom and I had it. I’d run both hypo and hyper. Hand tremors, fatigue, weakness, (to the point I had to drag myself up steps) tingling/prickling in hands, etc., etc., etc., sounds like CIDP, doesn’t it! I’ve forgotten what I had to drink (maybe iodine), but I had to drink it out of a lead container. I wish I could remember more, but this was thirty years ago. I didn’t pick up the symptoms of the CIDP I had in 1998 because they were so similiar to the thyroid. I remember one very weird thing, I would CRAVE coffee and drink it by the bowl. I am fine now and don’t have any problems as long as I remember to take my synthroid on a daily basis.
AnonymousJanuary 26, 2007 at 5:11 pm
Would have replied sooner, but I dont seem to be getting email notifications on the newer threads I have responded to. Havent been on the forum for a couple of days.
All I can say is that you need to take your husband with you whenever possible. I think we are so shattered by some of the answers we get that we aren’t able to think straight, so thankgoodness your hubby was there when your doctor gave you that awful answer.
I feel so helpless for all of us who go through this emotional rollercoaster. So often I wish I had some major influence, regardless of what it was, and could work miracles, so that doctors were able and willing to spend more time working alongside us to try and find out what is wrong with us, I mean, even some kind of acknowledgement goes a long way. Oh well, its ok to dream sometimes 😮 .
AnonymousJanuary 27, 2007 at 6:54 pm
Thank you for answering.
Sue, I have been told that kelp is not a good idea. Armour can be bought on prescription under the name of Thyroxine, but I really think that I should get examined properly first and get a scan and some more bloodwork.
I have discovered that I am not very good at expressing my symptoms. There are so many of them and different ways to discribe them. Doctors do not take kindly to oddly described symptoms and researching and questions arising from researching. Right now I am very depressed and chocked into limbo from confrontrations with doctors and no diagnose.
I am told by doctors that I belong not in their department but maybe in the other. It seems that from the doctors view that I am in the middle of neuro, endo, rheumatism and psychiatric. I am confused by too much reading and have decided not to read and research for a while.
I am still wondering whether it is GBS/CIDP in connection with upset in the rest of the body to rise antibodies. I wish that I could find the needle in the haystack! In the past few days I have been considering being better off dead, but I still hang on and try to distract myself. Sorry, if this sounds gloomy, but I am depressed.
I do appreciate you being there 🙂
AnonymousJanuary 27, 2007 at 7:06 pm
Dear Friend ~ you are not just depressed but discouraged and weary of the seach for a definative answer. And it’s humiliating when the docs look at you like it’s all in your head 🙁 You just wish that they could live in your body for a month! I am so sorry for the run-a-round 😮
Perhaps our dear DocDavid might have an idea on how to move forward from here. Have you taken “print outs” with you to the consultations? I often would with “highlighted” points particular to me You are paying them to listen and you may have to get more demanding (that’s scary). And when you don’t feel good, that’s hard to do 🙁
I’m just sure, that whether we would admit it or not, many of us, at one time or another, have thought about being better off dead. [I]But[/I] how we would miss you!! I know, that’s selfish but that’s why we have this great family “to survive together, to bouy each other up”.
Hugs, hugs and more hugs 🙂 with prayer thoughts for you.
AnonymousJanuary 27, 2007 at 9:11 pm
Sorry Ninus you still don’t have answers. I know it is hard to fight sometimes.
I just found 2 1/2 years ago I had ADHD and since I had to fight to get the right medication.
I switched my pschychiatrist to another and he help get me the right medication but not the right dosage and he wouldn’t budge so my new family DR didn’t know much about ADHD but is learning and willing to give me the right dosage. In the last few years I had to get rid of my family DR of 22yrs because of her attitude. She knew I had CIDP but couldn’t remember she called my problem chronic fatigue and made me feel like crap on my last visit with her. I have been getting the run around the last few years with the medical community. I would like to stop fighting them but then I realize I need to fix the problems I have. I get tired and I am tired but I must continue.
I wish I could do more for you
AnonymousJanuary 28, 2007 at 6:10 am
Just saw your post. I’m sorry you are going through a difficult period. I know you asked about thyroid disease — I was diagnosed with Hashimotos when I was 20 and have been on Synthroid for the past 20 years. Its one of the first things my neurologist asked me about.
I am far more concerned with your statements about depression. Months after being diagnosed with cidp, I started having panic attacks. Trouble swallowing, etc. But i didn’t know thats what they were — I thought my cidp was advancing. Fortunately, my neuro DID see what was happening. I did seek professional help, started taking antidepressants, and things are soooo much better.
So my advice to you, if people are suggesting that you may be depressed, is that you think about it carefully and consider seeking professional help. I was, frankly, shocked and offended when my doc first suggested this, but then I learned more about depression and anxiety and saw how right he really was.
Take care, Ninus
AnonymousFebruary 20, 2007 at 2:49 pm
I have also gone thru a nightmare lasting over 7 years now. Last March I had to terminate my health insurance – after a week in the local hospital dec of 2005 ran up my bills to 20K – I lost sensation from toes up to bottom rib (my 3rd relapse but the docs here in dayona beach say it’s ‘all in my head’) along with permanent loss of sensation in fingers and some muscles i didn’t even know i had..
I have tried to work on the net but cannot sit very long, and i am not eligible for SS – when i tried to get it the psychologist stated I was a malingerer – I couldn’t hold the pen or pencil and he said my symptoms were ‘exaggerated’.
so now I have nothing – no insurance, this is taking forever to type – i have to watch my fingers on the keyboard and ..
My motto, when I had a real job, was ‘there are no small jobs, just small people’.
well, I feel very small right now – the last doctors visit i could afford was in oct of 2006 and he is the one who finally wrote down CIDP – up until then neurologists said ‘possible MS’. can’t go to the doctors anymore. Pretty ironic – I was once a vocational evaluator, i helped people find jobs or get SS. No one here for me though.
Have a nice day, Lorri
AnonymousFebruary 20, 2007 at 3:05 pm
Hi Lorri, Welcome to the Family. I’m sorry to hear you are also getting the runaround from drs. it seems to be the easy way out for many health professionals all around the country. i’ve had 5 hospital relapses and 5 at home relapses, and all the drs are going against each other -some (the drs who have seen me prior to gbs) all say its not in my head-its real-not sure exactly what, but 2 are saying its acute gbs relapsing/remitting type. other drs and others are saying its nothing and its in my head. i tend to go with my drs who have known me for many years for i have more faith in them because they have spent many more hours talking to me and listening more to my symptoms.
don’t give up on all drs, even without ins you can be seen for minimal costs. it sounds like you need to find a neuro at a teaching university and get a dx and then try for disability again. just don’t give up-its a fight but you need to go for the win here for your health and future.
feel free to ask any questions and vent anytime you need to. take care.
AnonymousFebruary 20, 2007 at 4:01 pm
Thanks for reply cheryl,
to be honest, I just don’t have the money for more doctors, and i have just been kicked too many times while i was already down – cannot fight by myself anymore. i have been hearing impaired since childhood so i can’t even phone anybody – can’t drive anmore, can barely write legibly – i have a sharp brain but it’s not getting much exercise lately.
I learned to adapt with 75% hearing loss – boy do people make fun of you when you’re a child and you can’t hear and they don’t know it (i can’t even wear my hearing aids anymore cause it casues so much face and neck spasms). Then I was physically injured – helping a disbled person – in ’96 – i tried to be optimistic. Hurt my thoracic spine by lifting “correctly”. unbelievable. Then my whole system, after years of constant pain and infections – it’s like i wore myself out – only on the inside, then.
of course now pain shows up like bad makeup applied to my face.
i am so tired now, no support, unmarried, no kids, no family – i am almost 48 and have spent most of my life as an outsider looking in. personally, the next time i go to a hospital hopefully i will be in a body bag – that’s just how i feel. since my last hospital visit i had 2 relapses – the 2nd relapse i didn’t even know i was on my period until, well, i’m sure you can figure that out – good old visual cues – so i wrote a living will to ensure that if the next time the loss of muscles and sensations moves higher up – past my ribs, that they can only put me on a ventilator for 6 hours (if i cannot speak – if i can speak i am not going to a hospital – period) – that way i won’t leave too many hospital bills behind for the “medical community” to sucker someone with. I spent 8 years as a hospice volunteer for people with aids – i was a clown and performed for free. money never meant a thing to me unless someone else could benefit from it. I paid my rent and food and taxes – the rest – well you can imagine the cost for needs of people dying from a disease no one cared about – especially back then – not even their own families visited them. That’s how i feel now. i was once so strong and athletic and – busy – i slept 4 hours each night, maximum. now, i might sleep 2 hours – it’s a long 2 hours, though – not very restful. I recently had surgery for something else january and am having treatments every day for one more month or so, i’ve been ‘lurking’ at this site a few months now. i don’t feel sorry for myself – just seems like i am wasting good air and someone ready to be born is waiting for me to pack it in. good thing i am against suicide or they’d be in their crib gulping down their formula right about now.
at least i know the true nature of most people – most people could care less about the misery of another – unless that person’s misery interfered with their day. that’s reality and i hate thinking like that, but that’s what happens when one person sees things as they are – and is powerless to change it. well, i will lurk for a bit more – while i have a pc and an internet connection.
have a good day, and be well, lorri
You must be logged in to reply to this topic.