I have major medical issues that I can't seem to get a diagnosis for, At first I was told it was most likely Lupus so I was sent to a rheumatologist who said it wasn't Lupus. My symptoms are getting worse and I on't know what to do or which doc to ask. It started about eight years ago with hair loss, short term memory loss, fevers, and bacterial rashes. I went to the hospital after passing out and they told me it was most likely the West Nile Virus. Soon after I began to have difficulty swallowing and stomach pain. I saw a gasteroenterologist who said I had Dysphagia and my stomach and intestines contacted incorrectly. No treatment was ever suggested. Soon thereafter I began to experience joint pain and dizzyness. I now have to catheterize to urinate at all. For the last year I have stopped having my period, lost 40lbs, began vomiting 4-5 times a week. Lately, I have been having slurred speech, or using the wrong words, and when I walk I am off balance. Like I am falling forward. I am scared that by the time I am correctly diagnosed it will be to late to do anything about it. I'm only 38, and not yet ready to go.
17 Jun 2012
Hi, i'm so sorry to hear you are going through so much! How long ago did you see the gasteroenterologist? I'm really hesitant to say this, because i don't want you to panic unnecessarily, but it does sound like gastric carcinoma? I'm really concerned about your symptoms and can't believe you haven't had more successful care and treatment? What is your current healthcare situation?
17 Jun 2012
Hello freakinout, & welcome to the site. I would be freaking out too if all of this was happening to me! The symptoms you list could be from a whole array of diseases. Did the rheumatologist do an ANA panel on you? It's a blood test that either confirms or denies the presence of lupus. Without that test, he is just guessing. I think you need to get yourself to a University type of medical place where there are several or all kinds of doctors & get a diagnosis & get a treatment started.These symptoms could be from Lyme disese or any if many different diseases. First is getting th proper testing to find out what is causing the symptoms.Did the gastro doc doc a scope of your stomach or colon? These are very important tests & should have been done. If you are unable to get into a University Hospital or Clinic, I would suggest you see a neruologist, & go from there. Hopefully he/she will be better equipped to guide you in the right direction. What does your PCP say... Mary
17 Jun 2012
Who is trying to manage these symptoms? Did the rheumatologist test for anything besides lupus? Since most of your symptoms have a neurological root, I'm going to suggest you see a neurologist. Take all your medical records with you so that he will know everything that's been done. Some doctor needs to sit down, look at all your symptoms together and figure it out. It sounds like they've tried to manage each symptom as a seperate entitiy.
17 Jun 2012
Hello freakingouthere. I've a brother in law in law who although I'm not close with, if I have a question he'll usually give me feedback. I'll pass along yours and see if he might offer his opinion. Its Sunday so it will likely be later on this week. Regards pledge
17 Jun 2012
Dear Freakout, is it possible there is more than one condition that is causing these symptoms. Some sound like they are related to thyroid problems or hormone imbalances, some sound like a neurology problem, and some sound like fibromyalgia, which is associated with all sorts of conditions. Can you please list any medications you take, even over the counter? Thanks, patti
17 Jun 2012
Dear freakinout, well chosen name. Seeing what you and others said, I suggest you see a neurologist. Slurred speech, balance are controlled by nerves. Please don't panic, but an MRI of the brain may well be your solution. Insist you see a doctor immediately. If you are falling or experiencing blood from vomiting, urination, or anal, get to an ER and have them figure this out. What you seem to be lacking is one doctor who is looking at all of your symptoms and putting this puzzle together. The lupus test has many false positives as well as false negatives. It is not reliable. A full workup, blood, you name it, should be done. Again with one expert looking at this. An internal medicine doctor is also a good choice. They specialize in putting the pieces together.
The name of the disease does not matter at this point. Treatment is what is important as well as someone who will properly diagnose what is happening. And as the other writer said, you may have more than one thing going on. For example, been to a foreign country before you got this?
Gather your medical records from the different docs, clinics, and have them sent or take them to your specialist. Remember, waiting is not the choice. You have suffered a long time. Insist on an appointment with the specialist or do the ER route where they will get you the right doctor. Talk to the nurse to get in as they always have appts. that are open for things like this. With tomorrow being monday, you could be seeing someone within a day or two. Personally, I would use any real health excuse to get in to the ER and let them figure this out.
Take a list of your symptoms, meds, things you have tried. And a friend or spouse to help advocate. We get overwhelmed sometimes with information and another pair of ears taking notes can really help. To get good health care we have to speak up. You can do this. Getting better is the goal and my wish is you reach it soon. Karen
17 Jun 2012
I can't really add much more than what's already been said, but I just want you to know I really feel your pain, and I sincerely hope they will figure out something soon. Please know everyone is here for you, and wish you nothing but peace and happiness. Please keep us updated on anything that you find out. You will be in my thoughts and prayer's. Take care and Best Wishes hon. Ruthie
18 Jun 2012
Im so so sorry to hear about all these issues you are having. If I were you... don't get scared when I say this but im just putting myself in your shoes, again if I were you I would see an oncologist. It sounds like some sort of cancer possibly GI? Have you had a ct or mri done or a colonoscopy done? If not maybe start there. Im sorry I don't want to freak you out but I can't even imagine how you feel. Im in the middle of lab work b/c I possibly might have lupus. My ANA came back positive so I got referred to a Rheumatologist so im patiently waiting. I pray everything goes ok for you. God bless!
21 Jun 2012
MY UPDATE! Well, after stumbling around and talking like a drunk all day Friday I went back into my doctor. She has ordered me an MRI and is sending me to a different (better?) Neurologist. She is now thinking possible MS. MS? Lupis? Whatever!! I am just so frustrated that I have not gotten a diagnosis. I desperately need one just for my sanity sake. Thank you for everyone pulling for me. its been a suprisingly good day. Yesterday, not so much. Slept for sixteen hours. Just another bad day. I win some, I lose some.
22 Jun 2012
Hello freakinouthere -
You sound like you are having major thyroid issues. Hypothyroidism can cause a host of issues like:
hair loss, chronic fatigue, syncope, low blood pressure which would make you feel faint or dizzy. The joint pain would come in because your kidneys aren't functioning right and could be throwing minerals and salts. And the calcium being sucked out of your bones because your body needs it elsewhere. Do you find you are pretty thirsty but still thirsty after drinking???
I think you need immediate intervention before something bad happens. That "bad" moment for me was when I was complaining about dizziness while in PT on a bicycle and just pedaling away when "suddenly and without warning" I pitched forward and just about fell off the bike. I was so dizzy I got helped to a chair by another patient and the head of the office comes running with stethoscope to give my heart a listen. I ended up in the hospital after being referred back to my doctor and for me to "drive" to get there but stay off the highway. I was wobbly even as I walked to my car. One thing leads to another and finally got to my doctor's office and within about 10 minutes of arriving and being stuck in an exam room... I passed out cold on the floor.
Not so much fun and a ambulance ride to hospital later. Two weeks of nasty hospital care... and I got that diagnosis of Adrenal Insufficiency or Addison's Disease. What a pain in the neck. I could not eat only drink fluids and had been doing that for about 8 months. I lost my appetite and just couldn't eat. That is a common symptom of adrenal problems... hair loss is another. By the end of it all; I had bought two wigs and convinced I would never work again. The slurred speech is common too because your levels are all screwed up.
You need help like yesterday and you should see a specialist if you can get one like an endocrinologist. Ask your primary care doctor to help you because you are feeling that unwell. He may bring you in for an evaluation so keep a journal of all of your symptoms and when they started. I know it is a pain in the neck but it is vary, vary important for them to know as much about what happened and for how long... any medications you are on. Any sudden onset of symptoms while others may have crept up on you to say, "hello" I here and not going away...
Just a quick note here for a friend of mine who was in her 30's when her symptoms cropped up and a doctor told her she had lupus and she would have it and the rest of the stuff forever then put her on a boat load of meds. By the time she found a specialist, a Dr. Broda Barnes... she thought she was going to die. Her hair was just about gone and coming out in handfuls, no energy, she couldn't stand for long because of major weakness. However, after all of her tests were run with another of his colleagues in Brussels Belgium... they were convinced she didn't have lupus at all... she had hypothyroidism and immediately started changing her meds. I know this women from over the years and you wouldn't believe it if you didn't see her now with her lush, full head of hair and eye brows and such. She is all better and lecturing now as an associate of Dr. Broda Barnes. She works with his daughter in Brussels and do annual lecturers all over the country. What a story she tells.
The next big thing on her agenda is MS... the disease that sometimes isn't MS but a thyroid so out of whack that it wrecs havoc all over the body.
I am so sorry you are having to deal with this whole thing and the mystery of it all. I hope this gets worked out for you and you have more answers than questions coming at you. I wish you a speedy and full recovery and when you are up to it... please let us know how you are doing and what it is all about. You have friends here, too, and this one in particular is praying for you.
A full physical exam to start and a physician who listens to your symptoms and treats you like you are his/her only concern.
May God be the head of these doctors and lead them in the right direction for care, compassionate and loving care and a quality of concern that leaves you feeling like you are in the best of hands.
Hugs and Blessings to you,
2 Jul 2012
Sounds like you have really "been through the ringer" so to speak!! How scared you must be!! First and most important, you have to put your fears away ( I know that is not easy), but you have to think clearly. Write down all your symptoms, when they started, and if possible the progression of the symptoms. Medications?? Are you on any? You need to write them down, and if you go up to the top of this page on the very right side it says Mednotes. You can list all your medications and supplements there, and they tell you if there are any interactions. Aside from interactions, BRING the printable list to your doctor. Do you live near a University Hospital? That is where the best (most times) practice, and they have a wealth of informations available to you, besides putting many brains together to figure things out!! Also, I think that an infectious disease doctor is in order, as many diseases have neurological links.
This does NOT mean that you are dying!! I promise!! IT seems that you have a problem/disease that is progressing in your system that no one has found yet. Lyme disease really pops up in my head, as it has all these symptoms, and after the initial bite is EXTREMELY hard to find in your blood. Some Lyme specialists don't even bother to check you, just start treating you to see if you respond! Doctors don't think about this because the treatment for Lyme Disease is a generic drug, therefore big pharma doesn't present CLU's for things like that.
If you get Netflix, get the movie "under our skin". It is a very informative documentary about Lyme Disease, and the fact that it is probably the most under diagnosed disease in the USA. It is NOT only located in the Northeast, but all over the country, and it is in epidemic proportions.
I am not saying that you have Lyme Disease, I am not a doctor, BUT it is a start. Best of luck to you, we are all pulling for you!! Please let us know how you are doing!!
9 Jul 2012
Hi freakinouthere. I hope that you have seen the doctor by now, and you are on your way to recovery. I spoke to a very good friend of mine, and showed her your question. She is the one with Lyme's Disease. She absolutely knows more about lyme than anyone that I have even known. She says that you are in end stage lyme disease, and that you have every single symptom. This does not mean that you will die!! Please don't take this the wrong way. It means that you have had the disease for a long time and it has not been recognized. As soon as she saw the urinary problems, gastro, hair, etc., she knew right away. She is not a part of Drugs.com, and this is why I am answering for her. She says to google Lyme TAP, and they provide financial assistance to people with lyme disease. I also think that they help you find doctors who are familiar with the disease. I would put the link up, but then this message would be pulled.
Please see an infectious disease doctor, or a doctor who is educated in Lyme Disease. You can find that through the Lyme Disease Assc. online also. They point you to a doctor in your area that can help you, and hopefully cure you of this awful disease.
Please let us know how you are doing. We really do care, and your question had me quite concerned!! Best of luck to you, truly!! Ellen
Search for questions
Still looking for answers? Try searching for what you seek or ask your own question.
Lupus Erythematosus - Is there anything that will minimize the scaring and disfiguerment of my face?
Discoid Lupus has made me a shut in, because I can't stand anyone to look at me. My face, both cheeks and accross my nose is so scalely and ...
2 answers • 14 Feb 2010
Sine I've started taking Plaquenil I have had iregular periods. Sometimes twice a month. I'm also on C-Quinicrine as well. Could either ...
1 answer • 1 Mar 2012
... Any advice? It's all a bit overwhelming. We live in New Zealand.She is under the care of a rheumatologist & takes ...
2 answers • 12 May 2012
... disease to say the least. I got diagnosed at 17 yrs old so I have been through a lot. I'm in a flare up right now and have to postpone my ...
8 answers • 3 Aug 2012
... plaqunil & cellcept? Also, I understand lupus has over 100 different signs/symptoms, however I would like to reach out to other lupus ...
5 answers • 12 May 2013