Can I please ask for a second, third, fourth... opinion. I feel I AM going crazy after all

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1

Hello Everyone, Thank you for reading. As you all know we are often told "it's all in your head".

All my life I have told the truth regarding how I am feeling. From a very young age I complained of severe ear aches, muscle pain, memory recall, cognitive thought issues, depression, burning itchy rash on my feet and back,UTI's etc. etc. etc.

Each time my parents had an answer that minimized my symptoms. They often told me "everyone gets that". My eldest brother and two sisters never mentioned anything.

All this started when my mother told me on the 23 rd of October last year, that she took Thalidomide when she was pregnant with me. We only ever hear about the 20% who suffered terrible loss of limbs. The other 80% do not get a mention even though the Governments knew in 1962 Thalidomide caused damage to every unborn babies Thyroid.

For some reason my father chose to not tell me about that, even though he knew I was getting quite sick with the symptoms of Hashimoto's and Sero -Negative Lupus among others..

After a thorough investigation it has been clarified that the Thalidomide Toxicity has been the cause of all my health issues, including Auto immune Disease.

All this has been a bit upsetting and my eye site is going foggy when I feel any stress. There is nothing wrong with my eyes. My father and mother, who are not together, are now denying any knowledge of my mother taking Thalidomide after all.

I would be grateful for anyone's opinion, would you feel hurt and want an explanation (?) because I have been to hell and back. I know I need to forgive, I'm just not ready just yet. I have mentioned this before one other time, it's just this extra worry. Should I be concerned about it?

Thank you & Blessings

Kittyhorse

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That is so sad. First, how old are you? Do you live with them? It almost sounds like they have some mental issues themselves…I’d make sure I was not living with them. Or even near them. You need to think of yourself. It’s hard enough to have this disease WITH help and kindness. I have learned to turn off anyone who is negative and can bring on stress…I don’t care who they are. It really IS EASY to be nice…takes a lot more effort to be difficult.

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Steen is right. Turn off anyone who is this negative in your life. Here’s another thing I’ve learned through experience. It’s one thing to forgive someone who has made a mistake in the past, but when the same mistake is still happening in the present it’s not a mistake anymore. It’s a choice. Usually if you realize you’ve made a mistake, you are remorseful. You realize your actions and change. Your parents aren’t changing. They seem to have many issues to deal with on their own. That doesn’t mean you can’t love them. But to me it would mean a LOT of distance. Just my humble opinion. Thru experience I’ve realized that I love my mom but we are just better being distant.

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I’m so sorry. I’ve had these illnesses since childhood as well but my symptoms were really obvious. Pretty hard to blow off a child who looks like she has the mumps every few weeks. I agree with the others that you need to stay away from your family as much as possible. I only live an hour away from mine but I see them on my terms and only when I feel up to dealing with their issues. They’re separated so the issues are many. As for forgiving them, do it only for your peace of mind, not for them. I don’t know how old you are but if you can move away from them. You didn’t mention how your siblings treat you but if they are putting pressure on you to forgive then you may have to avoid them too. Do your best to surround yourself with positive people and create a new family of friends. Please let us know how you are doing. Remember only forgive if it’s for you. Gentle hugs, Annemarie

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I am sorry to hear about your parents but honestly knowing or not knowing wouldn’t change anything. Due to the fact that its an autoimmune disrase it was already in your system. It would be denificial for you to talk to a pschyatris it has helped me .i suffer from lupus so i understand

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My heart goes out to you! I agree with everything said here....try to find support with positive people....doctors, friends, family members. It does no good to be around toxic people, even if they are family members, and your health is what is most important. What has happened is in the past and I would want to know what really went on, but I feel that it would make you feel much worse getting into it with your parents. They have major issues and I pray that you can get away from all of that negativity.

Please keep us posted...we care about you!

Lori

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I know any thing any one says wil l not be what you want to hear, but some may be what you need…I fully understand how you feel I grew up the same way, one time my mother refused to believe me that I was sick I had 103 degree temp for 3 days before she Took me to the dr. I just recently found out what was wrong with me in the past 3 years and boy is it alt to take in, you will never have people Around you understand how you feel or how they make you feel, to this day my husband thinks if I think more “positive” and “exercise” I would feel, he loves me and means well, no one but us know how it is I think that is the reason i like this site so much, there’s people who understand people who relate to, also about the forgiveness, it may seem like it’s for them but really it will help you get through it, if she told you or not it would not change the fact that your life was the one affected by her choice, and both of there actions all together, it wasn’t right the way they treated you, but you have enough to carry then to worry and carry that burden when you can let it go , even if you never tell her, just you knowing it will make you feel so much more free… What we go thru day by day is enough don’t put yourself thru More .I pray for your hearts content and True happiness .

My motto is , just keep swimming swimming swimming…
Lacie

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So sorry this happened to you. Similar thing happened to me, but not exactly the same.

We don't get to pick our parents.

You got to hold on.

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My Mother was given DES when she was pregnant with me. I wonder if that contributed to my various health problems over the years (I am now almost 65) I know it caused cancer in some of the daughters and then I read it caused cancer in the daughters' daughters. I guess we will never know.

Ellen

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my mother took des also. we will never know. there is just so much unknown about autoimmune diseases in general

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Thank you so much for everyones replies. I am VEY grateful. It's lonely over here in Australia with Auto Immune Disease unless I go on Facebook. Currently I am experiencing a awful flare.I have severe Costochondritis on my bottom ribs at the back. Also every night starting around 10.00 pm I feel a flare coming on. Apparently it is not uncommon for Auto Immune Hashimoto's to flare at night. Has anyone had any experience with that?

Basically what I now know is that Thalidomide damaged me at the Cellular level. I am not taking up the Thyroxine flowing in my blood stream. Thyroid tests show I am in normal range yet my symptoms are escalating out of control. I have always reported the truth as far as the symptoms effecting me. On Thursday last week the Doctor said "It is all in your head". Who has heard that before! Lol. What hope is there if they think I am lying. What would I gain out of lying? This has been going on for years now so what can I possibly do about it anyway.

Thank you again USA and others. x

Blessings

Kittyhorse

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Thank you sincerely for your reply. At the time when Thalidomide was identified as to causing malformations of the limbs in unborn babies, it was asuumed that the able bodied babies were not harmed. Health issues didn't present with these children until they were older. They didn't have the Scientific Data available or CT Scans and MRI's. Another able bodied Thalidomider I have met started bleeding from the bowel aged four. He then went on to have 14 different health issues including Hashimoto's and Thyroid Cancer. Funding for Trials and Scientific Testing research was only conducted in the last 20 years or so.

If we had of known about the Thalidomide Toxicity at an earlier age I would have been sent to a Neurologist to test for nerve damage. I would of been believed when I reported my symptoms. There would of been a reasonable explanation for my pain level. As it was the 'normal' testing did not justify what I was reporting. I was often accused of exaggerating or lying because pain can not be seen.

After 16 years of suffering with medication resistant Depressive Illness, my Psychiatrist added 20 mg of Dopamine and the Depression lifted with no side effects what so ever. It felt like a miracle! Now my family want to take that away from me because they think I will abuse it. I will not abuse it, I have NEVER injected a drug to get high and they don't make you high when they are taken properly as they were intended for.

Thalidomide damaged the part of the brain that makes Serotonin, Noradrenalin, Dopamine and memory recall. It also changed the Enzymes in the Liver. I metabolize medication quickly which is why drugs only last 4 - 6 hours. I always need a high dose of medication, that's if I can tolerate them at all. My Dentist who I have been seeing for 20 years just knows to have extra Local injections ready for me. The other guy I have met who is effected, is the same as well.

Something good will come out of this surely! Thank you again.

Kittyhorse ,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,.............



delia quintanilla said:

I am sorry to hear about your parents but honestly knowing or not knowing wouldn't change anything. Due to the fact that its an autoimmune disrase it was already in your system. It would be denificial for you to talk to a pschyatris it has helped me .i suffer from lupus so i understand
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Lupie said:

my mother took des also. we will never know. there is just so much unknown about autoimmune diseases in general

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sweetiepie65 said:



Lupie said:

my mother took des also. we will never know. there is just so much unknown about autoimmune diseases in general

I never knew anyone else that their Mother was given DES. Did your Mother get cancer? My Mom got breast cancer and it finally killed her.

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Yes my mother got breast cancer and is in remission two years now. It’s not likely to come back percentage wise. I haven’t had cancer but did have cervical dysplasia as a teen

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Hello Kittyhorse! I want to start off by saying I’m sorry you went through all the things you did with your parents you must of felt very alone. But your not alone anymore you have all of us! I wonder if the reason your mother told you she took the meds and now denies it is because she has extreme guilt about it. It still doesn’t make it right because you are suffering and deserve answers and the truth from your parents. You had some excellent advice already but I just want to add because you need to find some peace within yourself. If you parents don’t change then the only thing you can control is yourself. I say YES forgive your parents for your sake. You have to let this part of your life go because keeping it can cause you to flare and get sicker. I know it’s easier said then done but you have to separate yourself from negativity for your own well being. You have the medical information you need to try and get the proper help from Dr.s. The Dr. You just saw doesn’t sound like he’s listening to you or he’s not educated on your diseases. You will have to find another Dr. keep going to different Dr.s until you find one that will listen to you. There are great Dr.s out there and being dismissed is terrible. Best of luck to you you sound like a wonderful person so don’t let your past predict your future hang in there and surround yourself with positive people only! Let us know how you are doing take care!

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Hello Kittyhorse, I saw this a while back and just now I’m reading it to offer help… I went through something very similar with my mother trying to get me diagnosed with hypochondria and borderline personality disorder, even though my doctors themselves believe me and have diagnosed me with lupus, Hashimoto’s (which has now gone away since treatment for the lupus, which is now fairly stable) and bipolar mood disorder (pre-dated the lupus diagnosis, and runs in the family, but may also relate to neuropsychiatric effects of the lupus that appears to affect my brain to some extent.) Having a mood disorder, and at times even disordered thinking (aka psychosis, which I believe, and my rheumatologist supports, came from lupus flares not bipolar disorder) makes it especially easy to call me crazy and dismiss symptoms. The amazing thing is, my mom still rejected my diagnosis despite THREE Rheumatologists agreeing, based on blood tests as well as observable symptoms and diagnostic criteria, that I indeed have SLE of moderate severity. According to the neuropsychiatric lupus specialist, who is also a prominent researcher in that sub-subspecialty, I have “probable CNS SLE,” i.e. physical lupus cause for my craziness and cognitive changes that come and go. From day one I never claimed not to be a little crazy, but rather sought help for how it was inadequately addressed by standard bipolar treatment (as well as all the mounting physical symptoms.)

Turns out it’s possible not only to be crazy and think you have lupus, etc, (my mom’s thinking, your family and doctors’ thinking), but also to have lupus and be crazy because of the disease itself or the meds that treat it. It’s really difficult to understand the concept of correlation vs. causation (hard for almost anyone who hasn’t had explicit scientific training), and even more so to apply it to a living person. Doctors have the task (and training) to do it the best they can, but a lot of times they get it wrong too. They’re people, some of whom are merely fallible in trying to do their best, and others who are stubbornly superialistic, and many who are now jaded by the challenges of the job and many difficult patients, from those who deny treatment for obvious illness, don’t stick to treatment they supposedly agree to, continue in health behaviors that will lead to later problems, and, yes, those who exaggerate symptoms out of anxiety, or the minuscule percentage that may legitimately have a psychological need for the attention. Many people overestimate that last one, and many doctors fail to treat the anxiety first and then proceed to consider symptoms that remain after the patient is calm. If they already feel better, great! But if not, the job isn’t finished. The best hope is with doctors that inherently love to solve mysterious problems, so a researcher is always a good bet (but extremely long waits for appointments sometimes.)

So, all things considered, some people (including doctor people) are committed to doubting and blaming the impatient patient. It’s important to find patience at least in your manner of presenting symptoms while you press for answers, in order to keep people working with you (and let go of the ones who never will see your side.)

The part of being “in your head” that is actually useful to follow is that whatever stress you have will always make all symptoms you have worse, of whatever the illness may or may not be. Remove causes of stress in your life, both external and internal (practices like meaningful activities to give you joy and centeredness, meditation or counseling and even meds like anti-depressants for depression and anxiety, or in my situation, mood stabilizers.) Letting go of anger and indignation toward those closest to you who have failed you and continue to drag you down is one of the hardest things to do, but will help greatly! A greatbook I always recommend for all this is “How to BE Sick” by Tony Bernhard.

Best wishes!
Brynn