DDee
09-20-2011, 02:45 AM
I have been reading some of the prior posts and found that everyone has a unique story and experience to share along with the valuable information on diagnosis, treatment and suggestions.
My story is as follows:
I am prior military 21+ yrs and have received all thevaccinations known to mankind except the “p” tabs for neurological events. I was very active and health wasn’t an issue– my health record depth over the last 32 years was approximately 5 inchesthick. When asked what my heath statuswas I always listed excellent. My fieldof work is Industrial Hygiene and Bioenvironmental Engineering.
A short history of my experiences – I will try to keep it asbrief as possible:
In Nov 2010 lost my cousin and aunt due to long termillnesses and noticed that I was getting a sinus infection – normal for thetime of year and traveling to different areas.
Dec 2010 – Sinus infection worsened - started the Sudafedand gargled with salt water. This oldfashion remedy used to work great for sinus congestion. My grandmother was an herbalist and used toexplain how to use Belladonna as a decongestant and Foxglove for heartproblems. I never put her recipes topractice when they involved toxic plants. By the end of Dec I had to sleep on the couch propped up because Icouldn’t breathe lying down plus I started producing fresh blood from my nose.
10 Jan 2011 – Decided I needed to get a doctor appointment –the bloody nose and sinus infection had worsened plus memory issues weregetting to be a problem mostly due to excessive pain from head swelling. I havenever had a bloody nose and this was completely new to me. Was given Augmentin for 10 days (round 1 ofthe antibiotics’).
18 Jan 2011 – Sinus pain and blood was increasing. I also noticed that I was getting severe headachesand felt swelling at the base of my neck and along my forehead. Back to the doctor again – this time I gotLoratadine and Sudafed to take along with the rest of the Augementin from theprevious doctor appointment.
20 Jan 2011 – Double vision and a trip to the emergency room– I was given Levaquin and Fluticasone and sent on my merry way. I tried to tell the doctor that the bloodynose and swelling neck and head was not right but she insisted that the 2ndround of antibiotics would do the trick.
28 Jan – 2 Feb 2011 – Went back to the doctor again becauseof increasing pain (had trouble driving due to the pain and bloody nose). This time the doctor was going to try the Zpak (5 day antibiotics) and asked me if I had any questions. The internalalarms started sounding off so I asked – “have you ever looked in the mirrorand didn’t recognize the person?” Thatstatement got immediate attention. Thedoctor asked me what I meant and I said I was going to die if someone didn’tlisten to me. That response warranted animmediate trip to the x-ray dept, an unexplained cyst on my lungs and a callfor an ambulance for a trip to the hospital. I was admitted for 3 days for pneumonia and then transferred to another“real” hospital for evaluation. Got a bronchoscopy,more x-rays and more antibiotics’. Senthome with an “all better” attitude from all the doctors even though I keptasking them to send in a specialist for the bloody nose.
20 - 26 Feb 2011 – Lost sight in my right eye and rushed toanother emergency room. Spinal taps,blood tests and transferred to another hospital where infection control couldmonitor. During this trip I felt like apin cushion but didn’t mind – I wanted answers.
Infection control tested for a broad range of possibilitiesincluding fungal infections. Finally arheumatologist was sent in to see me. Hewas very blunt and told me what he thought – Wegener’s. He also told me that if the blood resultsdidn’t come back by the next day they would have to do a biopsy of my kidney’sbecause they were on a downhill spiral – creatin at 3.5 and gaining along withprotein levels. The test results cameback and an IV of Cytoxen was given on 26 Feb. Sent home and told to come in on the following Monday (28 Feb 2011). I later found out my doctor went to JohnHopkins and Columbia Medical – the best in this area and lucky he came inbecause he normally didn’t go to the hospital I was at.
28 Feb – 11 Mar 2011 – Thankful my sister decided tovisit because my husband was out of town and I really needed someone to driveme to my appointment. I wasn’t used todriving with one eye plus the steroids, antibiotics’ and chemo were taking atoll on my ability to concentrate. At approximately 4 AMwent into seizures due to a delayed reaction. Got another ambulance ride to local hospital then an air lift to anothercritical hospital - I had a stroke, seizures, aspirated and hit my headsomewhere down the line. Inabated and ina coma for 4 days during which I saw what I call my Guardian Angel standingnext to me the whole time. When I cameout of the coma, I asked the head nurse for the name of the person who stood next to me the whole time Iwas in a coma. The nurses, doctors and relatives looked perplexed so Idropped the subject. I wanted to thankthat person in the white robe? for being there through it all. My rheumatologist decided to switch toCytoxen via pill form.
Apr 2011 – Another trip to hospital for blood transfusiondue to extremely low hemoglobin and red blood count.
Apr 2011 – Another trip to hospital for diverticulitis andlow blood count – no blood transfusion this time.
Jun 2011 – Another trip to hospital for another bloodtransfusion.
During all of this tried to eat knowing that if I didn’t Iwould starve. Eating stuff that was highin flavor because everything smelled like burning cardboard and tasted likesweet, sour, spicy cardboard. Dropped25+ pounds.
Currently on Cellcept - Mycophenolate Mofetil 500 mg 2Xdaily for 2 weeks then I start taking 4 X daily, steroids (5mg daily) andRamipril. I finally got off the Kappra(seizures), Warfin (blood clots) and Coreg (heart). I am waiting for smelland taste to come back and wondering/fearing if I am going into relapse. Hair is a mess/missing but my sister steppedin and instructed me on how to tie the variety of scarves she got for me. Sounds like I am a mess but I look at it this way - I am walking, talking, seeing with one eye, driving and enjoying every minute of my independence because I know now how quickly things can change along with how they can change. Seeing my children and grandchildren laugh and smile is worth more than words can say.
After all of this I have told my 4 children and friends tokeep pushing doctors that don’t listen or get that second opinion. I went back to the doctors I saw and toldthem to listen to what is being said by the patient. The doctors did remember I kept telling themabout the bloody nose and swelling head but admitted they would have neverdiagnosed Wegener’s. At least they werehonest. I wish I had searched the webwith my symptoms.
Another note: In 2002I started feeling tired all the time and thought I had early Alzheimer's due to the inability to concentrate/forgetfulness. The doctor thought I was being funny when infact I was quite serious. Now I wonderif that was the beginning of my saga. Iwas diagnosed with Hypothyroidism and put on Synthroid.
My story is as follows:
I am prior military 21+ yrs and have received all thevaccinations known to mankind except the “p” tabs for neurological events. I was very active and health wasn’t an issue– my health record depth over the last 32 years was approximately 5 inchesthick. When asked what my heath statuswas I always listed excellent. My fieldof work is Industrial Hygiene and Bioenvironmental Engineering.
A short history of my experiences – I will try to keep it asbrief as possible:
In Nov 2010 lost my cousin and aunt due to long termillnesses and noticed that I was getting a sinus infection – normal for thetime of year and traveling to different areas.
Dec 2010 – Sinus infection worsened - started the Sudafedand gargled with salt water. This oldfashion remedy used to work great for sinus congestion. My grandmother was an herbalist and used toexplain how to use Belladonna as a decongestant and Foxglove for heartproblems. I never put her recipes topractice when they involved toxic plants. By the end of Dec I had to sleep on the couch propped up because Icouldn’t breathe lying down plus I started producing fresh blood from my nose.
10 Jan 2011 – Decided I needed to get a doctor appointment –the bloody nose and sinus infection had worsened plus memory issues weregetting to be a problem mostly due to excessive pain from head swelling. I havenever had a bloody nose and this was completely new to me. Was given Augmentin for 10 days (round 1 ofthe antibiotics’).
18 Jan 2011 – Sinus pain and blood was increasing. I also noticed that I was getting severe headachesand felt swelling at the base of my neck and along my forehead. Back to the doctor again – this time I gotLoratadine and Sudafed to take along with the rest of the Augementin from theprevious doctor appointment.
20 Jan 2011 – Double vision and a trip to the emergency room– I was given Levaquin and Fluticasone and sent on my merry way. I tried to tell the doctor that the bloodynose and swelling neck and head was not right but she insisted that the 2ndround of antibiotics would do the trick.
28 Jan – 2 Feb 2011 – Went back to the doctor again becauseof increasing pain (had trouble driving due to the pain and bloody nose). This time the doctor was going to try the Zpak (5 day antibiotics) and asked me if I had any questions. The internalalarms started sounding off so I asked – “have you ever looked in the mirrorand didn’t recognize the person?” Thatstatement got immediate attention. Thedoctor asked me what I meant and I said I was going to die if someone didn’tlisten to me. That response warranted animmediate trip to the x-ray dept, an unexplained cyst on my lungs and a callfor an ambulance for a trip to the hospital. I was admitted for 3 days for pneumonia and then transferred to another“real” hospital for evaluation. Got a bronchoscopy,more x-rays and more antibiotics’. Senthome with an “all better” attitude from all the doctors even though I keptasking them to send in a specialist for the bloody nose.
20 - 26 Feb 2011 – Lost sight in my right eye and rushed toanother emergency room. Spinal taps,blood tests and transferred to another hospital where infection control couldmonitor. During this trip I felt like apin cushion but didn’t mind – I wanted answers.
Infection control tested for a broad range of possibilitiesincluding fungal infections. Finally arheumatologist was sent in to see me. Hewas very blunt and told me what he thought – Wegener’s. He also told me that if the blood resultsdidn’t come back by the next day they would have to do a biopsy of my kidney’sbecause they were on a downhill spiral – creatin at 3.5 and gaining along withprotein levels. The test results cameback and an IV of Cytoxen was given on 26 Feb. Sent home and told to come in on the following Monday (28 Feb 2011). I later found out my doctor went to JohnHopkins and Columbia Medical – the best in this area and lucky he came inbecause he normally didn’t go to the hospital I was at.
28 Feb – 11 Mar 2011 – Thankful my sister decided tovisit because my husband was out of town and I really needed someone to driveme to my appointment. I wasn’t used todriving with one eye plus the steroids, antibiotics’ and chemo were taking atoll on my ability to concentrate. At approximately 4 AMwent into seizures due to a delayed reaction. Got another ambulance ride to local hospital then an air lift to anothercritical hospital - I had a stroke, seizures, aspirated and hit my headsomewhere down the line. Inabated and ina coma for 4 days during which I saw what I call my Guardian Angel standingnext to me the whole time. When I cameout of the coma, I asked the head nurse for the name of the person who stood next to me the whole time Iwas in a coma. The nurses, doctors and relatives looked perplexed so Idropped the subject. I wanted to thankthat person in the white robe? for being there through it all. My rheumatologist decided to switch toCytoxen via pill form.
Apr 2011 – Another trip to hospital for blood transfusiondue to extremely low hemoglobin and red blood count.
Apr 2011 – Another trip to hospital for diverticulitis andlow blood count – no blood transfusion this time.
Jun 2011 – Another trip to hospital for another bloodtransfusion.
During all of this tried to eat knowing that if I didn’t Iwould starve. Eating stuff that was highin flavor because everything smelled like burning cardboard and tasted likesweet, sour, spicy cardboard. Dropped25+ pounds.
Currently on Cellcept - Mycophenolate Mofetil 500 mg 2Xdaily for 2 weeks then I start taking 4 X daily, steroids (5mg daily) andRamipril. I finally got off the Kappra(seizures), Warfin (blood clots) and Coreg (heart). I am waiting for smelland taste to come back and wondering/fearing if I am going into relapse. Hair is a mess/missing but my sister steppedin and instructed me on how to tie the variety of scarves she got for me. Sounds like I am a mess but I look at it this way - I am walking, talking, seeing with one eye, driving and enjoying every minute of my independence because I know now how quickly things can change along with how they can change. Seeing my children and grandchildren laugh and smile is worth more than words can say.
After all of this I have told my 4 children and friends tokeep pushing doctors that don’t listen or get that second opinion. I went back to the doctors I saw and toldthem to listen to what is being said by the patient. The doctors did remember I kept telling themabout the bloody nose and swelling head but admitted they would have neverdiagnosed Wegener’s. At least they werehonest. I wish I had searched the webwith my symptoms.
Another note: In 2002I started feeling tired all the time and thought I had early Alzheimer's due to the inability to concentrate/forgetfulness. The doctor thought I was being funny when infact I was quite serious. Now I wonderif that was the beginning of my saga. Iwas diagnosed with Hypothyroidism and put on Synthroid.