Discussions By Condition: I cannot get a diagnosis.

I keep getting more symptoms and they will not do anything about it

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: indiglo
  • October 18, 2006
  • 08:51 AM

I am going to skip the a lot of the in-between stuff and tell you what has happened with me physically since this is a very long ordeal that has gone on for 7 years.

This is what I know of what is going on:

1) Supposed Lipoma Silver Dollar sized diagnosed 6 years ago on my mid spine (no biopsy done, told not to worry about it and is of Atypical shape) :cool:
2) Fibromyalgia diagnosed 1999. At the same time my heart came down with Atypical Tachacardia and I also had developed Hypothyroidism and High Blood Pressure at the same time.

3 years ago I started having severe back pain both in my mid and in the lower back. Workmans Comp. said it was not work related after a year of going back and forth.

In the meantime I had retired from my job of 14 years because of the pain. I lost my Health Insurance and I only got $820 a month to live on. Insurance would have cost me (at the time) $386 per month.

I went to a private Primary Care doctor who was also a Chronic Pain Doctor. He sent for my scans from my HMO and raised my medication from 7.5 Hydrocodone to 30 mgs of Methadone a day in divided doses. The scans revealed that my HMO had known about the growth of the tumor and not told me even when I strted having the severe back pain. The scan had been taken a few months before I retired, after I had started seeing Workmans Comp. This would have been 1 1/2 years before seeing this doctor. The tumor at that time was the size of a dinner plate. The doctor told me to sek immediate medical attention because I didn't have the funds for the doctors he would have to refer me too.

I went to the county clinics and was told thta just the initial fee was $80 !!! Not to mention the tests that would have to be done. Since I was single and had no children I did not qualify for Medical, and since I did not have a diagnosis yet, I also did not qulify for Catastrophic Health Insurance from the County!! :mad:

I moved to Reno for better air and to be with my partner (male) who had moved here 6 months earlier for a better wage. What I did not know was that he was in the middle of a manic phase and had not been diagnosed yet!! So, if you know what manic depression is you know what I had to go through!! He lost his job and had a complete breakdown because of the stress of every doctor we went to here in Reno just turning me away because I do not have enough money for the tests neccessary to diagnose the tumors, which number 3 now, that I know of!!! :eek:

I was having problems getting the scan from the Pain Doctors ofice because he has incompetent staff and lost the scan!!!!!! So, I am hoping that my HMO still has it and has not gotten a whiff of what i have been going through and lost theirs too!!!!

Anyway, the pain is getting worse by the day. My joints now are getting very stiff if I stay in 1 position for too long and when I wake up, sometimes my back is so stiff that I literally am in so much pain that I cannot move on my own!!! My partner has to come and get me and lift up my legs and then lower them over the side of the bed slowly so that my back does not go into a spasm!!

In the past 6 months my blood pressure has been going up steadily until now it is out of control and they cannot get it down. I get pain radiating down my legs that the emergency room doctors gave me morphine and then Dilaudid (sp?) an hour later and nothing worked to ease the pain!!! Then they sent me home and told me to go to my regular doctor who says it is just a regular Lipoma, but has not had any biopsies or scans done herself to verify that!!!

In the same amount of time that my blood pressure has gone up my feet and legs are now swelling up and my kidneys are working just fine. The symptoms of this edema are different in that when I press down on my calf or foot, the indentation takes SEVERAL MINUTES to go away!! I found out through research online that this is Lymphedema and that it is a possible life threatening illness in that if I get the tinies little nick in my skin, even a misquito bite, that I could very easily get a systemic infection that could be life threatening!!! If I do not stay in bed my left leg swells up so much that it cuts off the blood from getting out of my leg and my feet and toes start to turn blue and then viens in my feet are bulging which has never happened before.

Last month I had my menstural cycle and it didn't flow at all. I DID BLEED, but the blood would not flow out of me which means my blood is hypercoagulating!!?? My doctor said it is nothing to worry about!! Can you believe that?? The last time I had my platelet count taken was like 3 1/2 to 4 years ago and it was about 450,000 so how does he know that it is nothing to worry about??? 450,000 is already 50,000 over the best range for health and my blood would actually bleed just like everybody else's!! So, just how much worse is it anyway for it not to flow at all??? I would bet on it that it is very bad news!!

I have also developed in the last few days the feeling that my spirit just wants to pop right out f my body. This is a physical feeling in my brain. I get this feeling almost like vertigo, but not vertigo that makes it very hard to concentrate on very much of anything when it happens. Kind of like a feeling of un-reality. I have also been getting ravenous for the last few weeks. Whats up with that??

I cannot eat much more than usual, but when I get hungry it is very sudden and I feel like my stomach is about to eat itself before I actually get something in it.

I thought it was because I had found a topical solution from a Natural Health plae tht is curing all kins of tumors and cancers and hve been using it. I thought the reason I was getting so ravenous was because it was working and my body need the extra nourishment.!!

The pain in my back is getting worse by the day and I have been telling my NEW pain doctor and this is what he finally had to say, (last year when I started seeing him he cut my medical in half!!)

"If your pain continues to get worse I am going to take you off of the pain medication altogether. It has been shown not to be helpful for people wth Fibromyalgia". !!@#$ #$%$ He said that since I do not have a diagnosis of the tumor that he cannot justify having me taking the pain medication!! These doctors do not want to treat me becasue i do not have health insurance and that I have to pay out of pocket!!! Then I find out when I go to make my next apointment and pay for the visit that without notifying me they literaly doubled their fees!!!!!! So, I am being railroaded out of my own Chronic pain Doctors office while the pain continues to worsen!!!

I don't know what to do. I can't hire an Attorney until I have a diagnosis either!!! How do you come up with the money to get the tests when your partner and you are presently disabled, have applied to Social Security and have been turned down because supposedly the tumor is not ausing me to have movement problems in my legs from it!!! How stupid is that??? They do not care that it could be malignant. or, that it is causing me a great deal of pain. All they are woried about is whether I can still walk or not!! And, now all these other things are happening!


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