Discussions By Condition: Medical Stories

Not alone am I?

Posted In: Medical Stories 7 Replies
  • Posted By: Kawendie
  • May 8, 2009
  • 03:34 PM

I am new to this website so please be patient. My sysmptoms started two years ago. I woke up one morning with itching hives and swollen hands. My physican sent me to an allergist and diagnosed angio adema and pruitis. Next (with a couple of weeks) came the pain on my right side(whole body) Over the past rwo years I have been tested for autoimmune disease and every cancer test imaginable. (resulting from renal cell carcinoma about seven years ago.) I have had instances of spinal swelling they can't figure out and recently the symptoms progessed to Dizziness, fainting, gastrointestinal sensitivity.

Here is what I don't understand, even though I have protein and Ketones in my urine, by bp goes very high (180/110) only during the times these sypmtoms are at their worst. And my heart rate goes up when it should go down, no physician can tell me what's going on. They say I am depressed. I am not depressed, I am howver stressed about what's going on. Its hard to have your children affraid your going to fall out on them. Has anyone had these symptoms?

Swelling and pain in the face
Purple ans sensitive hands
increased BP
extreme fatigue
Body pains
Fainting

I should also mention that I have to use a cain to get around because I am not too steady on my feet.:confused:

Reply Flag this Discussion

7 Replies:

  • Check with your doctor for further specialists you should go to for consultation since no answers have been found at his/her office and/or those places he/she has sent you to for evaluation. Perhaps a neurologist and an endocrinologist as well.
    neurotransmissing 145 Replies Flag this Response
  • Thank you for your reply. I have seen three neurologist. One sent me to number two, he's as confused as my pcp. The third thinks it's all in my head. I Just recently was in the hospital due to my heart rate. I certain labs that are slighty off and it feels like I am declining at a more rapid rate than two years ago. Does anyone have symptoms like this?
    Kawendie 12 Replies Flag this Response
  • Don't give up, I went through years without a diagnosis (and STILL wait for conclusion, this is the closest I've ever been ... "phenomena" began in 1996), I wish I knew then, all those years, what I know now. If no answers from the neurologists (are they still looking or conducting tests?), try the endocrinologist and a rheumatologist ... look at viral causes. If your lymph nodes are swollen, or they "rise and fall," try an ENT (ear, nose, and throat specialist) as well.
    neurotransmissing 145 Replies Flag this Response
  • Mostly they look for tumors, a rheumatologist thought some type of overlap syndrome is going on but my ANA came back normal. I had renal cell carcinoma in 2002, that issue is completely resolved and I don't know why they keep looking for tumors. Given the fact that I have had some abnormal head and back CT's I would think neurology as well. I am going to request an endocrinologist. I hope you get the conclusion you need. It's much easier to fight a known enemy. Please keep and touch and let me know when you get your answers. I will not give up, as hard as this is, I love life too much and will not allow whatever this is to take away more than it already has. It sounds like you feel the same!
    Kawendie 12 Replies Flag this Response
  • Hi there Kawendie, I was just on another thread posting, saw one of your posts (which, BTW, your post was very thoughtful and supplied insightfully good advice), and recalled this thread. I hope things are going better for you and you are getting some answers. It's a long haul, believe me, I know! LOL To the point, we share some similarities (except for possible PML, not at all applicable in your case, so please don't fret about that; if that is the case with me, it came later ... following many, many other conditions and situations that left me very immunosuppressed. Also, PML is very rare. And BTW, although they are looking at it to rule it in/out ... personally, I do not believe I have it; far too much time has passed and my intellect remains completely intact. I have lost no memory whatsoever, however, I am forgetful; then I began Cymbalta (anti-depressant), the first that has ever worked ... THANK GOD! And my forgetfulness is now improved as well). I come back to this thread because we share a lot similar far prior to the suspicion of PML in my case. I share the "overlap" of conditions/symptoms as you mention; further, I share with you the quest of looking for tumors (once yet again for the millionth time). I suspect that, in your case, they are looking for Sarcoidosis ... as is the case with me, and now ... that's back on the table (when formerly, this was believed to have been ruled out). I have had three "non-specific" tumors removed, all infiltrative ... meaning that they grow and infiltrate, destroying surrounding bone and tissue.) It sounds like they may be wanting to rule that out, as your experience and sequence of events are similar to mine. Have you received feedback from the neurologist yet?
    neurotransmissing 145 Replies Flag this Response
  • Nothing yet. A cardiologist is a consideration but my physican seems to be in a wait and see mode. I have some new symptoms as well that I am trying to just watch before paying out of pocket for my doc to scratch his head and say "he's worried." but not know what to do. Do you mind telling me more about what's happened and what's happening to you? I won't fret about PML, I promise. I have benign tumors called adenoma's (but if they are benign, why are we chasing tumors.) I also have lung nodules.... maybe that is why we keep ending up there. My biggest fear is that whatever is going on is affecting my internal organs, I only have one kidney and would really appreciate keeping it.
    Kawendie 12 Replies Flag this Response
  • Nothing yet. A cardiologist is a consideration but my physican seems to be in a wait and see mode. I have some new symptoms as well that I am trying to just watch before paying out of pocket for my doc to scratch his head and say "he's worried." but not know what to do. Oh no ... you have to pay out-of-pocket, no coverage?? I'm so sorry if that's the situation ... because I feel strongly that as each new symptom or condition develops, you should certainly be seen. I understand the $$ crunch all to well, even with coverage ... and the disappointment of going to so many appointments only to lack any rhyme or reason as to what my diagnosis could be. I hope you try to go ... have you looked at options for coverage? Or additional coverage if what you have is not feasible enough, whatever the case may be? Do you mind telling me more about what's happened and what's happening to you? I won't fret about PML, I promise. I have benign tumors called adenoma's (but if they are benign, why are we chasing tumors.) I also have lung nodules.... maybe that is why we keep ending up there. My biggest fear is that whatever is going on is affecting my internal organs, I only have one kidney and would really appreciate keeping it. I suspect they are chasing tumors to get a diagnosis for you; in addition, as mine were, they may be watching in case any may appear to be infiltrative (as I posted in most recent message here). However, again, I am just grasping at straws here ... so I don't know. Mine were also benign, but they were dangerously infiltrative and had to be removed; upon biopsy though, they (as you say) came out "scratching their heads" and also implied concern. However, there were no new developments to lead them to believe otherwise until recently. As for my situation, I am more than happy to tell you the whole story; however, it's a llllllooooooonnnnnnngggggggggg story, beginning in 1996. If you like, I will supply you here with a "vague" short version; if you'd like the long version, in gruesome detail, feel free to email me at neurotransmissing@yahoo.com if you would like all the details. I'll have to take it one message at a time though, if that's okay. Actually, I had planned to post my history ... but haven't been afforded the time and energy to do so on the message board here. If you want it message by message though, eventually ... I'll get it finished, edited, and post the final version on the board without getting too personal; as between you and me, I will supply more details and trust that it will remain confidential. Let me know how you would like me to tell you my story. Short and sweet version here, or long version. I'm so sorry you are going through all this, and now reading that there are new developments as well. You remain in my prayers.
    neurotransmissing 145 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.
Advertisement

8 Health Dangers of Depression

Unmanaged depression can take a toll on your physical health.

Best Cough & Cold Meds for Kids

Help your child feel better, faster.

What HIV Positive Women Should Know About Sex

You can have sex after an HIV diagnosis.

Food Choices for Diabetes

What, when and how much you eat affects your blood sugar.

6 Exercises for Multiple Sclerosis

Ease your way into these stretching and strengthening moves,

Advertisement