Discussions By Condition: I cannot get a diagnosis.

Vague symptoms, No Diagnosis! Please help!

Posted In: I cannot get a diagnosis. 47 Replies
  • Posted By: frustratednp
  • January 11, 2009
  • 04:06 AM

This is a long post, but I wanted to tell the whole story.

I have been ill since the first week in August 2008. I have a long history of sinus and allergy problems. I was diagnosed with an immune deficiency in 2007 (IgG subclass 3) and started receiving IVIG infusions monthly.

Before I became ill, I had been working 60-80 hours/week as a nurse practitioner in a wound clinic. I have been doing that for almost 6 years. I also worked out in the gym 2-3 times/week. I was busy all the time and loved it.

The first week in August, I had my infusion on a Tues and was feeling as if I had a sinus infection coming on. I usually get about 2-3/year now. I was tired, had a constant frontal headache and had tons of post nasal drip. That Thursday night I was out with friends at dinner and abruptly felt like I was going to pass out or throw up. I was clammy and kept dry heaving. I literally left the dinner table and somehow made it home. I then slept for the next 3 days while I tried to shake off whatever the virus was.

Over the next few weeks I was a little better in that I went back to work and tried to get back to normal but I began having lots of trouble with extreme heat intolerance and dizziness and feeling like I was about to faint. I was usually able to get past it by drinking something cold or immediately changing my environment where there was a breeze. I continued to have headaches and lots of post nasal drip.

I saw my ENT surgeon after a few weeks and he did an injection of steroids and antibiotics into my sinuses (which I was used to having as it kept me off of systemic therapies), However, I didn't feel better and the dizziness/vertigo got progressively worse as did my fatigue. I talked to my ID MD and we checked basic labs as well as my thyroid function and test for mono. All were negative. We had also checked my IgG levels again and they were predicatably low as I was due for my next infusion within a few days.

Now I was into Sept and feeling worse by the day. On top of the fatigue and headaches and dizziness I was getting really nauseous and had symptoms of a head cold/bad sinus infection.

The 3rd week of Sept, I was supposed to present several lectures at a medical conference. I went to the hotel the night before and woke up in the middle of the night with an overpowering sense of crushing fatigue. It literally felt as if someone was holding me down in the bed. I do not ever recall feeling so ill. The nausea and headaches persisted as did a nagging cough. I did not make it out of bed for the next 3 days. I felt a bit better over the next few days. This was a period from Wed-Sat.

I was still feeling ill that Monday and woke up again with the crushing fatigue in the middle of the night. It persisted throughout the day and I finally decided that I needed to be hospitalized as I was dehydrated and the fatigue and other symptoms were preventing me from getting to my doctors. Therefore, I was not able to get any testing done. I was given fluids and the tests began.

I was hospitalized for several days (3). I was fortunate because my symptoms were so vague (headache, dizziness, nausea, fatigue, sinus probs, presyncopal feelings) but the people who were treating me worked with me on a daily basis and they knew that I was sick. They did a full workup including checking me for autoimmune, rheumatological, infections and various viral syndromes. After a few days of hydration I was able to go home and wait for the test results. I had also had a CT of my sinuses that was negative.

After I went home I had VNG testing to check on the dizziness. The VNG testing was normal except I had some visual tracking abnormalities. They recommended I see a neurologist. I saw someone about 2 weeks later (this is early October by now). I was diagnosed with vestibular migraines and started on lexapro 10mg daily. Over the next few weeks, the profound fatigue and nausea returned and now I was having numbness along my left cheekbone and occasionally wrapping around to my left ear. I never developed a rash or anything else. I then had an MRI of my brain that was normal.

It was around this time that I started acupuncture treatments that really helped a lot of the nausea and headaches. However the fatigue was not really going away. It felt as it my limbs were tired. I did not have joint pain, tenderness or swollen lymph nodes or fevers. I would sleep 9-10 hours and really struggle to wake up. It would take several hours.

Now it is around the end of October/early November. I am still having problems with fatigue, nausea and headaches although my major migraines seem to be getting better. I think this is all immune related as my system does not seem to be recovering. I had another "crash" of my system on 10/14/08 where I had to sleep and deal with crazy headaches again for a few days.

I saved all of my energy for work and did nothing but sleep or go to MD or acupuncture appointments in my spare time. About the 3rd week in November (the week before Thanksgiving), my body crashed again. That is the best way to describe it as I become essentially nonfunctional. I sleep 18 hours/day, am nauseous and feel as if my limbs cannot move. The dizziness and feelings of heat intolerance and pre-fainting did not go away. By this time, I was getting really depressed over this as I had no control over anything.

My doctors were all baffled as to what was going on. The working theory was that it was viral and that it would eventually work out. They kept proposing more rest although all I had done for the past 2 months was rest and was only marginally better.

I continued to get my IVIG the first week of every month. I had another crash the 2nd weekend of December. I was still struggling with fatigue, headaches and dizziness. I did a timeline for my appointments and also as a way to keep track of everything. I noticed that I seemed to "crash" 7-14 days after my infusion each month.

Also, I developed a rash on my left trunk on 12/15 that looked consistent with Lyme disease. I had the classic "bullseye" lesion and then hives all over. Although I had negative lyme titers in Oct and no known exposure, I was treated with a week of doxycycline and the rash went away.

Right after I developed the rash, I went to see my GI MD. I have a history of IBS (diarrhea predominant) and was maintained on a small dose of lotronex. He wants to do an upper GI series.

When I saw the immune specialist, he focused more on my history of sinus disease. He felt that the IVIG may not be treating me aggressively enough and prescribed a regimen of nasal rinses with powdered steroids and antibiotics. He also felt that my thyroid was slightly enlarged and wanted me to get an endocrinologist to check it out. He thought it was important to check for Hashimotos thyroiditis. He drew a complete panel of thyroid studies. He did not have much to say about my immune status overall. I brought up CVID and chronic fatigue syndrome but he didn't think that was it.

My headaches, which had been kind of quiet, got progressively worse over the end of December/early Jan.

I had given all of my records to a great rheumatologist at the hospital for his insight. He thought it would be worth looking into serum sickness from the IVIG. He had seen similar problems with people getting remicade infusions. He recommended getting the Jan infusion, then repeating all of my serologies again prior to the Feb infusion.

I received the results of my thyroid panel which were all normal. Very frustrating. I have not yet been able to get an endocrinologist to palpate my thyroid.

On Jan 1st, I was really tired again all day but thought it was due to the holidays and travel. I was due for IVIG on 1/2/09. That morning when I woke up I felt a bit off and then developed horrible diarrhea (just straight water). I went to get my infusion as I thought the fluids would help to hydrate me. During the infusion I was doing reasonably well; just was tired. With about 15 min to go, I began to feel really fatigued and blah. I then got really nauseous, ran into the bathroom and threw up 6 or 7 times. I then got horrible rigors. My vitals were basically normal but I couldn't stop the rigors. They took me down to the ER for more fluids. When they checked my vitals again, I had raised my temp about 3-4 degrees to 101. I did fine after more fluids. Of course over the next few days I did nothing but sleep and rest. My appetite stayed screwed up for about 6 days.

I got a really bad headache while I was in the ER. Although I always get a headache post infusion, this one got worse quickly. By Monday night, it was probably the 2nd worse headache ever. I had excruciating pain around my head, down the back of my neck and my back. I could not move or get the pain to go away. My left side of my skull felt numb and tingly as did my back. Treximet allowed me to sleep for a few hours and then I arranged for acupuncture the next day. Fortunately, that helped the migraine get better from a 9/10 to about 4/10.

I saw my PCP again Tues night. She is testing me for heavy metal poisoning and ordered a CT of my chest, abdomen and pelvis. as she said, all of my blood work is coming back normal, but something is clearly wrong. I look ill with dark circles under my eyes, pale and clearly am dropping some weight (nothing scary but 5 lbs). My neurologist increased my dose of lexapro and offered me a course of steroids to break the migraine but I am declining that as I think it will stir the pot too much. I will stick with acupuncture for now.

Any thoughts? As I wrote earlier, I am a nurse practitioner (31 years old) and cannot believe that I am stuck in this drama. In my medical practice, I am the person that treats all the mystery diagnosis patients. It is incredibly frustrating that no one can figure this out and that it keeps getting chalked up as depression or "self destruction".

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