Discussions By Condition: I cannot get a diagnosis.

After All Those Visits, You'd Think It'd Start To Make Sense

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: pixiepony
  • October 1, 2008
  • 00:14 AM

Well, I don't know where to start. i really don't. The beginning is good, usually, but I have no idea where mine is. The beginning of the laast flare? Or the real begining years ago, which most Dr's do not seem to take in consideration, just the here and now.

I started seeking help about 2 years ago. I was sick, all the time. I could not get well before coming down with something else. I had the flu, pnuemonia, strep, 4 stomache viruses, then neuro system took a hit. I developed severe anxiety and was put on an antidepressant and anti-anxiety. (by the time the neuro sx started, I was no longer continually sick). Within a few months the meds were working well and my depression/anxiety lifted and I felt good. During the time of my sickness I did see a Dr who tested for Thyroid issues and nothing was found. That was the extent of testing then.

After a few more months I was walking my dog and all of a sudden I was on the ground. My left leg had just given out. It was odd, but I didn't tak much notice other then it being odd. Within weeks I went from feeling great to feeling the worst I have ever felt. Severe one sided head aches constantly, numbness in my arms and legs, hands and feet, heaviness in my extremities, weakness, blurry vision, stabbing eye pain, dizziness, forgetfull ness, vertigo, confusion, body aches and pains, bladder and bowel problems, fatigue, hair loss, skin rashes(eczema and sun sun sensitivity)... it goes on and on. My fatigue is always off and on. Lasts for a few weeks, then better.

most of the strange symptoms have come and gone, over and over. Most of it lasted for a good 4 -5 months. Most of it is gone, but returns often. I get some of the symptoms at a time, but not a full onlsought of all of them at once, like I had then. The most common symptoms that remain are one sided head aches, digestive issues (food sensitivity), body aches and pains and fatigue.The most severe is the body pains. It is pretty prominent in my legs, mostly upper legs and hips. These are dealt with weekly if not daily.

One odd thing I'd like to mention is that when I do have muscle weakness, the very next day, the muscles that were weak are very sore. Almost as if I was working out hard or something.

Currently I am on Flexeral to help with muscle pain. Lyrica made me way to tired. I could not function on it. Topamax helped the headaches, but gave me terrible side effects.

I have had no diagnosis. I have seen 2 neuros, 1 rhumy, 1 Chiro and my regular Dr. I have had more blood drawn and tests than I think I have in my body!! I have had a few things come up abnormal, but nothing alarming. ( I have my tests, but am in the middle of reorganizing and not sure where they are). Normal MRI of brain no contrast, EKG, EEG, Nerve conduction, and (whatever that test is that goes along with the NCV). No Lyme, no defeciancies, no mono(though I had had it at some point). My ANA's and RA's were normal. Fibro and CFS were ruled out.

The rhumetologist on my last visit said perhaps it is an auto-immune disorder in it's early stages. Said he couldn't (or wouldn't) do anything unless it attacked more severely. Or perhaps just some virus. 1st Neuro siad he had no idea what was going on and no idea what to do. 2nd neuro said possibly a virus, but not sure. Wanted me on celebrex. But i opted out of celebrex.

The pain I get is almost daily. My activity level depends on the severity. The more I am up and about, the higher my pain level is. I can't just sit around and do nothing. I was practically confined to my couch when I had my bad flare up. I can't stand it.

As far as any other flare ups. My 1st pregnancy 6 yrs ago I had black outs, dizziness, fatigue ( more so than just being pregnant). My OB sent me off for tests and everything came back normal. They eventually had to induce the labor. Symptoms went away within a few weeks. Yet, I get some of those same ones ever so often, so not sure I can blame it on my pregnancy then.

I am 28, healthy other than the obvious. I eat a good balanced diet.

I am at my wits end. I am frustrated with receiving only guesses and no real help. Some days I really struggle and others I am okay. I hate making plans because I just don't know how I will feel that day. Will it be a good day or a bad day?

Any help, advice or suggestions on something else to explore would be great....

Reply Flag this Discussion
Thanks! A moderator will review your post and it will be live within the next 24 hours.