Discussions By Condition: I cannot get a diagnosis.

Doctors cant help please help me

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: Jenndex2002
  • March 2, 2012
  • 05:05 PM

So I startedbeing sick in may of 2011. It kinda started gradually in April but since may I have been dizzy without spinning, lightheaded, best way to describe it is feeling messed up like drunk or something. I have gone to er about 10 times. I have gone to salt lake city, mayo clinic in Phoenix and I see my doctor regularly in Elko Nevada. I have got MRI heart tests blood tests just about everything it seems. My ears have been completely checked out and they are fine. I feel so alone and feel like no one can help me. I am 28 yrs old. I have two young children 2 and 4. This is extremely affecting our lives. Someone always has to be with me cuz I feel like I'm going to pass out. Please help me any feedback would be awesome. I'm lost and so is my family we don't know what to do anymore we are scared and know we need an answer soon.

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  • Hi, So sorry you are feeling this way..about 12 months ago I also was very dizzy like i was stuck on a rollercoaster all day i would walk and you would think i was drunk cause i couldnt keep my balance cause it felt like the world was spinning and felt as if it was moving the doctors would give me valium and I would sleep my dizzy life away so I got tired of sleeping and being in and out of the E.R and not feeling like my old self I was tired of the doctor sayinf the dizziness was just something that I was going to have to live with cause that was a scary thought indeed so I got up one day and decided to fix it.I began to try different things I learned that when I ate baked potatoes from Wendys and the skin I got less dizzy so I would eat two potatoes everyday until I started getting better low magnesium makes you dizzy and try not to eat to much sugar when you are dizzy to much caffiene and i learned to make sure I was drinking enough water cause dehydration makes you dizzy and I noticed that massaging my neck with muscle rub about three times a day and massaging behind my ears makes your ears drain and relax and massage your face muscles and that would make me less dizzy and I'd sometimes hold heat to my ears like with a blow dryer or a fan heater and when I would get the hot air blowin at the right angle I could feel my ears jumping down inside you may have a neck injury are back and it will make you feel dizzy and very ill Sometimes we injure our backs and necks when we are kids and dont realize it. I feel out of a tree and landed on my back when i was about 11 years old and never told a grown up about it I fell so hard I knocked the wind out of myself for about 2 minutes. whenever I feel myself getting dizzy I repeat all these steps until I'm all better believe me I know do all of things for a while and it may help. Dont give up Things will get better.
    Nikki954 1 Replies Flag this Response
  • Dear Friend,Your C1 might be subluxated.See a cranio sacral therapist to free the cranio sacral flow.Also do blood tests for Lyme disease (borrelia WB), rickettsia, Q fever, bilharzia, toxoplasma, CMV, EBV, Coxsackie.Love,Dr B
    Anonymous 42789 Replies Flag this Response
  • Thank you I have tried alot of things I completely cut all sugar out if my diet for months and there was no change I will try the potato thing. Yeah nothing is spinning for me my head just feels fuzzy all the time I have been really really bad lately I can't even do my normal daily routines it is hard. Anymore advice from anyone would be awesome I'm lost and so are the doctors. Thank you
    Jenndex2002 7 Replies Flag this Response
  • II have suggest that you be checked to see if you have meniere's disease. It causes vertigo, dizziness, nausea. It might come and go. It is an inner ear problem. I had it for many years off and on and then in August I started having a feeling like I had cotton in my left ear and wasn't hearing well. I went to the doctor 4 times over a period of 4 months, Had the most of the symptoms above off and on. Finally I saw and ENT and was diagnosed with Auto Immune Ear Disease (AIED). Since February I have lost my hearing in my left ear and my right ear is about 30% functional. I have been told that I will go deaf as there is another underlying auto immune disease. CT, xray, MRI and 50 blood tests later and they haven't found anything. I just finished 20 days of 64 mg of steroids and it isn't better. I was told that when I had the original onset sympton that the steroids should have worked. After a zillion hours of researching and reading and all those negative tests, I believe that I have food allergies. Allergies can cause the immune system to ramp up and be out of control. I am doing a gluten and egg free diet and am confident this is much healthier than a life of steroids that are ******n your body. Do some research on meniere and AIED and leaky gut. You might be surprised. Of course this not how the traditional doctors will treat you they would rather give you a drug, I have been reading a lot people's stories and all I see is multiple auto immune disease being treated by one drug after another until people are not able to function. I have also been successfully in finding people on sights that have had similar experiences as you and have tried the diet change and have gotten better and off all their meds. The doctors have said whatever you are doing keep doing, By the way I am the least natural food person in the world so it took me weeks to get to where I am now. I have also been more a traditional follow the doctor person. What did it for me is when the auto immune disease doctor asked me "how I am with the unknown and told me we might never find the problem and we may put you on chemo therapy, that I started doing my own research.
    Anonymous 42789 Replies Flag this Response
  • Did you see an ENT? Could it be Menieres disease?So I startedbeing sick in may of 2011. It kinda started gradually in April but since may I have been dizzy without spinning, lightheaded, best way to describe it is feeling messed up like drunk or something. I have gone to er about 10 times. I have gone to salt lake city, mayo clinic in Phoenix and I see my doctor regularly in Elko Nevada. I have got MRI heart tests blood tests just about everything it seems. My ears have been completely checked out and they are fine. I feel so alone and feel like no one can help me. I am 28 yrs old. I have two young children 2 and 4. This is extremely affecting our lives. Someone always has to be with me cuz I feel like I'm going to pass out. Please help me any feedback would be awesome. I'm lost and so is my family we don't know what to do anymore we are scared and know we need an answer soon.
    wincha 1 Replies Flag this Response
  • I did get a food allergy test done and have cut some stuff out of my diet which I will be doing the gluten free pretty soon as well. I was tested for several ear things at the mayo clinic I will have to check that one though thank you very much. I'm sorry you went through so much too it is hard to have bad health and not have an answer its horrible I am trying to get off my meds as well to see how I feel without them I am only on 2the put still I shouldn't need nothing but vitamins. Again thank u love any input.
    Jenndex2002 7 Replies Flag this Response
  • Searching for random answers about my own illness, I came across this page. Dr. B said exactly what I was thinking. Get checked for lyme disease. Before you get checked for lyme disease, read up on the massive controversy surrounding it. Good movie is called, "under our skin." This movie can be rented from netflix, or seen for free from a computer on hulu. FYI, most doctors don't know how to test for it, treat it, or even consider it, that's part of the controversy that goes with it. Do you have anxiety that is very strong in nature, do you have this weird sensation that feels like something is crawling under your' skin? There are many other symptoms, they effect people differently, and there are also many other infectious diseases some of which Dr. B suggested. Shoot me a message if you want to find out more info. P.S. I'm in Carlin :)Steven
    Anonymous 42789 Replies Flag this Response
  • Hey Steven in Carlin I probably know u this is Jennifer stokes aka Dexter yeah anyways I did get checked for Lynette disease when I went to the mayo clinic. Is the contversary something different or the same no crawling under skin or anything I am just lightheaded and dizzy all the time it gets really really bad at times but it is always here. Sucks bad. What's going on with your health.
    Jenndex2002 7 Replies Flag this Response
  • Thank u so much Dr b I have an appt with doctor tomorrow and will ask about all u mentioned anything will help
    Jenndex2002 7 Replies Flag this Response
  • I used to get light headed when I stood up, and would almost pass out. Sometimes I did pass out. That was one of the symptoms of lyme disease. It can also be caused by low aldosterone, which is a steroid in your' body made by your' adrenal glands. Can also be something called pots. I have been to doctors just like you jen, and am just barely finding out I have lyme disease even though I have never tested positive for it. The controversy with lyme is that almost NO DOCTOR knows how to test, diagnose, or treat it. Quite literally, there are maybe 100-200 doctors who do know how to test and diagnose it, and will treat it in the whole country. There are only maybe 20-30 doctors in the whole country who can treat it successfully though, and by that I mean that they can treat it to the point where you get all the way better and you don't relapse. I don't know if that's what you have, but you should know that IF you do, there are only about three doctors in salt lake who could catch it, one in reno, and none in vegas. I know how bad it is to have your' life put on hold because of health problems, I've been experiencing it for over ten years, and I"m only 29. Basically having a regular doctor test for lyme can be pointless, the test for lyme is very inaccurate, and your' doctor will most likely look at you like your' crazy if you ask for the test. I now this sounds conspiracy theory type ****, but if you watch that movie, "under our skin" it explains it all. However just being light headed doesn't sound like lyme, but I'm not a doctor, and if Dr. B suggested it, I would definately consider it.
    Anonymous 42789 Replies Flag this Response
  • Dear Friend,Your C1 might be subluxated.See a cranio sacral therapist to free the cranio sacral flow.Also do blood tests for Lyme disease (borrelia WB), rickettsia, Q fever, bilharzia, toxoplasma, CMV, EBV, Coxsackie.Love,Dr B Thank u my doctor is going to run alit of those tests well we did just waiting for results and my chiropractor order a MRI of my neck cuz he said the c1 is all messed up. So thanks again and keep your fingers crossed for me. Jenn
    Jenndex2002 7 Replies Flag this Response
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  • Yeah I would for sure like to get really tested for Lyme disease it is not just when I stand up it is all the time no matter what I do haven't figured out what really makes it worse yet but Ill have a few good days where dizziness is really light then it gets so bad all I can do is cry and lay in bed my head will feel so messed up its crazy. I hate it well I hope u get treated right and it helps u. I'm getting an MRI of my neck too which is great just praying something shows up if not I will for sure try to go to one of those doctors for Lyme I gotta find out what's wrong with me. Where u in my class just didn't want to mention your last name in case u didn't want me too.
    Jenndex2002 7 Replies Flag this Response
  • No, I'm not from here. You should go to mdjunction and look up the lyme forum for more information because it is really hard to catch it. IF you do have lyme it is really important to treat in the first year, after that you might have it for life. I'm not trying to scare you, so don't panic. Go there and people will help you on how to test and treat for it, a regular doctor will not help and they would infact just mislead you. If you do have it though the normal test your' regular doctor would use might catch it if you do it soon. Most people use a special lab test to catch it, but it's still not guarenteed(sp). Go to mdjuntion and watch "under our skin" on hulu if you don't find something soon. You don't want to wait if it's lyme, because it will get worse. Good luck.
    Anonymous 42789 Replies Flag this Response
  • Hi - Sorry you are having so many issues. I do think the Lyme Dz & chiropractic suggestions are great ones. I would like to also suggest you have your b-12 levels checked. often when people have very low levels they can have this very foggy buzzy headed feeling. usually a few shots of b-12 plus some sublingual doses will get levels back up again.Good luck!Linda
    PharMED 4 Replies Flag this Response
  • Thank u I talked to my doctor about Lyme disease and she said I tested negative for it and I've been reading lots about it and it seems like everything is kinda within first couple months and seemed u had to have a bite am I confusing it. Also I am pretty sure I was tested for b12 but I will have to look at my paperwork from mayo clinic thank u also I am getting an MRI of my neck on Monday so keeping fingers crossed at this point I would love surgery.
    Jenndex2002 7 Replies Flag this Response
  • On this link they talk about the elisa test, which is probably the one your' doctor gave you.http://ilads.org/lyme_disease/about_lyme.htmlIf you want I can friend you on facebook and send you a few doctors in Salt Lake City who would be able to tell you whether or not you have lyme. You probably know my cousins Nikki and Danielle from Carlin. Here is another good site.http://www.truthaboutlymedisease.com/
    Anonymous 42789 Replies Flag this Response
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