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Old 02-01-2013, 06:01 AM   #1
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Join Date: Feb 2013
Location: Georgia, United States
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vanalen86 HB User
Lightbulb Ready to give up... mystery diagnosis, POTS, auto immune?

Hello All!
I am in need of some support and thoughts from others and suggestions. Let me give you some background...approx 6yrs ago I started randomly passing out, I was in and out of the ER constantly seeking answers and all they ever said was vertigo, vertigo, vertigo. About a year after the fainting spells began I obtained insurance and saw a neurologist who did every test under the sun and he assured me it absolutely was not vertihe go! I ended up in the ER several more times with yup you guessed it vertigo diagnosis...frusterated as hell I went back to neuro who found my bp was 80/50 and sent me to a cardiologist..after months of basic testing and a halter monitor I was diagnosed with IST( innapropriate tachycardia)and Vasovagal syncope and put on meds to slow my heart rate. My cardiologist was cold and refused to do any further testing to check if something else was causing the syncope and tachycardia. I got pregnant with my son and most of the symptoms subsided, minus the fact that I had tons of complications of preterm labor. When my son was 6months old my symptoms reared there ugly head again as well as new symptoms...its now been 6yrs since my first episode and still no real diagnosis. I now suffer from severe migraines daily, tachycardia, tremors in my hands at times, severe joint pain and extreme exhaustion. I now have a new set of doctors since we moved who are quite irritated with how my doctors handled my diagnosis up north by blowing me off,I love my new doctors and they seem to think that I have an autoimmune disease, lupus or possible POTS/ dysautonomia. I have been poked and prodded so much and I'm going in debt from all of these medical appointments.has anyone else had similar experiences. I am ready to give up but I keep fighting for an answer so maybe one day I can have a normal life filled with activities and not always feel so ill! Thanks for reading, and also for any responses I get

 
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Old 02-01-2013, 09:37 AM   #2
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JLB78 HB User
Re: Ready to give up... mystery diagnosis, POTS, auto immune?

Hang in there. Finding a Dr. To listen and invest time seems to be most difficult. I was hospitalized at 15 yrs old I had a pronounced left eye droop and felt dizzy/lightheaded followed shortly by losing control of motor functions on my left side. All tests seemed to come back negative and I was told by several physicians it was in my head and sometimes we go through "Episodes". I literally slept for 17 to 18 hours a day for months felt fatigued when I was not sleeping. I was hospitalized again at 22 same thing, left eye droop, dizzy/lightheaded and loss of motor functions on the left side and respiratory issues this time a Neurologist gave a diagnosis of Myasthenia Gravis, I tested positive for antibodies and immediately started treatment, Mestinon,
plasma pheresis, and prednisone (to help open lungs). I gained quite a bit of weight and another Dr. did not care for the diagnosis and suggested I go for a second opinion to get a more advanced test (Single Fiber EMG) I traveled to the University of Penn to have this test done. The Dr performed the test and said the results were negative and this was "in my head" I was released just like that. Could not walk and my eye was still drooped, since I got a second opinion the Neurologist that diagnosed me wanted nothing more to do with my case. I continued taking the Mestinon and felt better.

Fast forward 12 years, I am now 34 have battled fatigue for what seems like
forever and just recently started with the left eye droop again. I have something going on in my left leg (don't have full control) but thankfully I have not lost full control. My Dr sent me for Lymes test which came back negative, he sent me to an Opthamologist for concern with the left eye droop, the Opto was concerned so he sent me to a Neuro-Opthamologist (who has been terrific) performed many tests and sent me for blood work. Without telling her my previous diagnosis, she said she is fairly certain this is Myasthenia Gravis (ironic). She wanted to rule out everything else, she called this morning to say Lymes and Lupus came back normal but I tested positive for Epstein Barr or at least it is still present in my system. This would explain the fatigue and she believes the two are tied together somehow. During our first exam she seemed concerned about a head tilt then asked to see my license, seems as though I have always had a head tilt, she suspects something traumatic took place a birth.

The saga continues, my mother has informed me that at 2 weeks old I had to be
hospitalized because I was unresponsive and had no movement. Drs. performed a spinal tap thinking I had Meningitus which came back negative 3 months later I was released without diagnosis. My mom said I was hospitalized again at 3 yrs old with an ear infection and again an undiagnosed anomaly. It's sad, this has been possibly ongoing for 34 years and I still have no concrete answers. I am glad I have hooked up with a Dr who genuinely seems to want to help and may finally feel as though I am not crazy and get real answers for once.

Sorry that was long winded. Good luck and if you know there is something not right, I know it's exhausting but find a Dr that is willing to stick by you until you get answers and get better.

 
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Old 02-01-2013, 09:44 AM   #3
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(male)
 
Join Date: Feb 2013
Location: New Jersey
Posts: 5
JLB78 HB User
Re: Ready to give up... mystery diagnosis, POTS, auto immune?

Hang in there. Finding a Dr. To listen and invest time seems to be most difficult. I was hospitalized at 15 yrs old I had a pronounced left eye droop and felt dizzy/lightheaded followed shortly by losing control of motor functions on my left side. All tests seemed to come back negative and I was told by several physicians it was in my head and sometimes we go through "Episodes". I literally slept for 17 to 18 hours a day for months felt fatigued when I was not sleeping. I was hospitalized again at 22 same thing, left eye droop, dizzy/lightheaded and loss of motor functions on the left side and respiratory issues this time a Neurologist gave a diagnosis of Myasthenia Gravis, I tested positive for antibodies and immediately started treatment, Mestinon,
plasma pheresis, and prednisone (to help open lungs). I gained quite a bit of weight and another Dr. did not care for the diagnosis and suggested I go for a second opinion to get a more advanced test (Single Fiber EMG) I traveled to the University of Penn to have this test done. The Dr performed the test and said the results were negative and this was "in my head" I was released just like that. Could not walk and my eye was still drooped, since I got a second opinion the Neurologist that diagnosed me wanted nothing more to do with my case. I continued taking the Mestinon and felt better.

Fast forward 12 years, I am now 34 have battled fatigue for what seems like
forever and just recently started with the left eye droop again. I have something going on in my left leg (don't have full control) but thankfully I have not lost full control. My Dr sent me for Lymes test which came back negative, he sent me to an Opthamologist for concern with the left eye droop, the Opto was concerned so he sent me to a Neuro-Opthamologist (who has been terrific) performed many tests and sent me for blood work. Without telling her my previous diagnosis, she said she is fairly certain this is Myasthenia Gravis (ironic). She wanted to rule out everything else, she called this morning to say Lymes and Lupus came back normal but I tested positive for Epstein Barr or at least it is still present in my system. This would explain the fatigue and she believes the two are tied together somehow. During our first exam she seemed concerned about a head tilt then asked to see my license, seems as though I have always had a head tilt, she suspects something traumatic took place a birth.

The saga continues, my mother has informed me that at 2 weeks old I had to be
hospitalized because I was unresponsive and had no movement. Drs. performed a spinal tap thinking I had Meningitus which came back negative 3 months later I was released without diagnosis. My mom said I was hospitalized again at 3 yrs old with an ear infection and again an undiagnosed anomaly. It's sad, this has been possibly ongoing for 34 years and I still have no concrete answers. I am glad I have hooked up with a Dr who genuinely seems to want to help and may finally feel as though I am not crazy and get real answers for once.

Sorry that was long winded. Good luck and if you know there is something not right, I know it's exhausting but find a Dr that is willing to stick by you until you get answers and get better.

 
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Old 02-08-2013, 04:49 AM   #4
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Re: Ready to give up... mystery diagnosis, POTS, auto immune?

Vanalen, hi & sorry for your problems. This has to be very frustrating but I'm glad you've keep trying. Yes, I had a lot of trouble getting a diagnosis and help. Mine turned out to be lupus, on the milder side, which (ironically for me) is actually harder to diagnose than severe lupus.

Because of your severe joint pain, I think it makes sense that your drs. are considering lupus. There are also some "close cousins" [that's my own terminology] to lupus that could cause some of the same symptoms. Also, there's an AI called APS (antiphospholipid syndrome) that's seen in many people with lupus: it's a blood clotting disorder that can cause migraines, clots, miscarriages, etc. You could go further by checking out the lupus board, btw.

I encourage you to read. I'm not saying this is lupus---I have no way of knowing & am only a patient. That said, there are some lupus books available in most public libraries that could be helpful. The ones that helped me the most discussed "differential diagnoses" for various symptoms. So if you find a symptom that looks kinda-sorta like yours, the authors cite OTHER possible conditions in which the symptom is seen. The authors also discuss how some of the AI's are differentiated from one another, e.g., how test results vary among them.

While reading can't get you a diagnosis, it sure can help you ask better questions... and sometimes suggest other specialists you might consult.

Have you gotten copies of your labs? It can't hurt to keep your own file, at least while you're still in the diagnostic stage. If you have specific questions, you could post them to ask for our *non-professional* take.

Hope this helps a bit. When do you go back? Let us know what happens next. Thinking of you & wishing you the best, Vee

 
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Old 02-11-2013, 06:00 AM   #5
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Join Date: Feb 2013
Location: Georgia, United States
Posts: 2
vanalen86 HB User
Re: Ready to give up... mystery diagnosis, POTS, auto immune?

Thank you guys so much for the support! My cardiologist reffered me to an Electrophysiologist and after a long wait I had my appt with him. The EP immediately did a repeat holter monitor and scheduled a tilt table test. I was told that I have Dysautonomia and apparently, I failed the tilt table test and he diagnosed me with POTS. IKm not sure if those two are the same thing or two seperate diagnosis working hand in hand.Him and my new cardiologist work together as a team and are the first doctors to really acknowledge something is wrong. As much as I didn't want POTS, I was relieved when I failed the test because it gave me confirmation that I'm not crazy and it's not all in my head! I was told when standing my HR shot above 120 and continued to climb even without movement....that explains why I hae shortness of breath anytime I stand. This is the beginning of something new now as we work to try and improve my symptoms as right now I'm always so tired and sick feeling that I barely leae my house. I am however excited though because at least now we have part of the puzzle to treat me.

 
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