autoimmune? neurological? neuromuscular? idk i need some help!!!!

[Trina1560]

Hi, I came across this site trying to research my symptoms because it seems my doctors aren't really that concerned and I feel like I'm on my own now. I'm very desperate and scared. I’m a 28 yr old female and was diagnosed with high blood pressure in 06, I take lisinopril. My vision started getting blurry around 05/06, I went to get an eye exam about 2 yrs ago and was told I have a stigmatism in both eyes but never got glasses. I had shingles on the right side of my face in July/Aug 2010. I started having stomach and bowel problems in about Nov 2010 and had a colonoscopy late Feb 2011. I have IBS which I take amitiza 8mcg. Had an endoscopy mid March that revealed I had gastritis (stomach lining inflammed) and I take pepcid ac before I eat. I’ve been suffering from Reynaud’s for some years now, didn’t think anything of it but I just got really cold until one day my fingers were taking so long to come back and were throbbing so bad I googled “white fingers and toes, very cold” and found it on my own. It’s getting worse in my feet, I have to wear socks and footies in my bedroom and they’re still very cold and turn red/blue. My head has been hurting everyday, all day, for about a month; very tender hurts to put pressure on it, hard to sleep, sometimes strikes of pain. I went to the ER a week ago because it was hurting so bad and my left eyelid drooped and now won't open as wide as the right. The CT scan only revealed an abnormality in my skull right front that I knew about but supposedly not a big deal. I've seen a rheumatologist 2xs; all blood tests were fine except a very low positive for antibodies. My basic blood work all came back normal. My muscles in my legs and arms are weak, its getting harder and harder everyday to climb stairs; my legs are burning and I'm short of breath. I have hypermobility in my joints similar to Ehlers-Danlos Syndrome but my rheumatologist knows nothing about EDS. Some joints are painful on and off, right now my left elbow is tender only when I extend it, a couple of weeks ago it was my left knee. I've been getting small muscles spasms in my eyes, arms and legs for years but didn't think anything of it. The spasms in my eyes were really bad in college but I didn't think it was anything serious. I see a nurse practioner April 12th with the plan to ask the doctor to slide in since thats the earliest I could get an appt. I've taught middle school math now for almost 5 yrs and haven't been to work in 2wks because the pain in my body and head have gotten so bad. I've never been a "crier" but I've cried more in the last few weeks than I've cried my entire life. I'm getting more and more concerned about my headaches everyday especially since my eye has drooped and of course everything else. I need some help :-(

[Trina1560]

I understand and considered all of that too so before I went to the second GI I went to the Gyno about 2 wks ago and had an exam and requested they tested me for everything; all STDs and HIV. The Gyno said I had some abnormal cells on my cervix and now I have an appt to get a biopsy done of my cervix but everything else was fine.

I had a car accident in 2003 were my tongue split in half and had to be sewn back together so I don't have any feeling in it but the back on the sides. My throat does bother me from time to time. I get strep 2-3 times a yr but I assumed I work with kids so that was normal. I've noticed I don't swallow as much, I just hold saliva in my mouth and then I'll realize man I haven't swallowed. And when I eat it feels like something is loose in there and I have to swallow hard. The back of my throat is always inflammed and red but the endoscopy biospys said everything was fine. I understood the endoscopy could make my throat sore but its been 2 wks now.

Thank you for taking the time to comment. I just feel myself getting more and more depressed and I'm scared.

[gemini1964796]

You sound a lot like myself in terms of having so many health issues going on at the same time. I don't want to scare the hell out of you, but you might want to ask for a complete screen to be done to rule out HIV and STI infections. This head pain you describe is something I experienced a few months ago that was misdiagnosed as being shingles on the occipital nerve in my head; I had visual disturbances, loud ringing in my ears, nausea, vomiting, joint swelling and muscle pain. I have IBD with chronic diarrhea and significant nerve damage in my lower left extremity from a damaged disc in my L5. After several months of feeling horrible, having no energy and not sleeping or wanting to eat, I requested a complete blood screen, including a VDRL, HepC and HIV antibodies. I wasn't expecting anything to come of it, but doctors didn't seem to know what was happening to me, so I felt that it was time to start "ruling out" any and all possible causes. No one was more shocked than I when my VDRL came back reactive for syphilis. I am still fighting for appropriate treatment for this infection, however, all of my symptoms are more easily explained. I am not what you might consider a "high risk" individual, but it just goes to show that there is no such thing as "high risk" anymore - we are all at risk of having something horrible happen to us.
I am by no means suggesting that this is what is going on with you, but I do encourage you to have the testing done regardless. When a patient becomes an advocate for their own health care and they are knowledgeable about what is going on with their own health, doctors and specialists seem more open to listening to the patient. Don't take no for an answer because the testing is just simple blood work and  ALL the answers will be found in the blood.....it's just a matter of knowing what directions to look in.
I wish you all the best with your journey.

[nana68]

I feel for you.I keep getting mini diagnosis.I had bellspalsy 4 years ago(facial drooping).my ear nose and throat doctor say that I have post herpatic neuralgia,thats supposed to be the reason why I get dizzy or it feels like fluid is building up in my eyes and ears.I have chest pain but theres nothing wrong with my heart per ekg and ecg.I have pain almost every where and weird sensation that come and go.I have numbness and tightness in my feet and weakness in my knees.I have sore throat and tounge.I had respiratory failure last year.I have been to a rheumatologist and she took 6 vials of blood which had many tests for every autoimmune disease and everything came back negative except I had a slightly high complement in which they said they weren't worried about.My ent gave me omeprazole for acid reflux but it is not helping my sore tounge and aching throat.I have seen a neurologist and and the tests came back normal eeg,emg,nerve conduction tests,brain mri and cervical spine mri(just a slight neck degeneration).The rheumatologist says fibromyalgia but I am not one hundred percent sure.I think that it maybe some kind of parasite or post virus syndrome but I am not sure how to find out about those.All I can say is that there are alot of people going through similar situations out there with no real diagnosis.I wish I could help you and me both.My suggestion would be to atleast get all the tests done to rule things out.