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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47 Replies:

  • Check for addison's i have it and your symptoms sound like mine. You feel as if you have been run over by a truck. I hope i could help:)
    ange777 3 Replies
    • January 12, 2009
    • 00:29 AM
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  • Thanks for the reply. I have been considering Addisons or some other adrenal issue recently. I had normal cortisol levels in Sept but the never got around to a stim test, although it was mentioned several times.I thought it would be easier if I listed the main symptoms right now:fatigue (unrelieved after restorative sleep, at times crushing and unrelenting)heat intoleranceheadaches (migraines that affect my posterior head, frontal sinuses and cause neck and shoulder pain as well as numbness along my left cheekbone)nausea (I usually associate this with a major migraine)Feeling of limb heaviness especially in the morningFeelings as if I will pass out (usually when I feel the heat intolerance, but sometimes for no apparent reason)Any help is MOST appreciated as I am being my own advocate and primary care provider through all of this! I do have a PCP but she is as puzzled by this as the rest of my specialists are. So I am spending lots of my own time researching possible causes. Thanks again.
    frustratednp 17 Replies
    • January 12, 2009
    • 03:41 AM
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  • 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 I have CFS also known as chronic fatigue immunity dysfunction syndrome. The description there is something which a CFIDS patient would write. Doctors commonly put this illness down to some kind of virus. (i was told that for 5 mths before diagnoses). From what you've said im quite sure you may have CFIDS The dizziness with CFIDS can be just dizziness or can be part of another symptom we get called POTS (postural orthostatic taccycardia) in which cause treating the POTS side of things can help a bit (POTS will also make one heat intollerant and give headaches and nausea). http://wwcoco.com/cfids/bernesx.html i suggest to check out the above symptom list. Unfortunately most doctors are very niave when it comes to CFIDS and dont really know much about it or just how many symptoms it can cause. The CDC say that 80% of CFIDS patients remain sick and undiagnosed. (and this is cause of doctors just not being comfortable with giving CFIDS diagnoses and not being up to the studies with it)............... Find yourself a doctor who is used to seeing CFIDS patients. (it is being said they may have a blood test out for CFIDS within a year). The biggest online place for info on CFIDS is www.immunesupport.com best luck
    taniaaust1 2267 Replies
    • January 12, 2009
    • 09:10 AM
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  • Please research POTS syndrome, and dysautonomiaGood LuckPam
    pamelasmc 82 Replies
    • January 12, 2009
    • 03:03 PM
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  • Thanks for all of the suggestions. Does anyone have any thoughts about adrenal issues as a possible cause? I have been looking at the CFS info for several months and I have some symptoms but do not fit all of the "criteria" that I have found. Also, any ideas on finding an immunologist who is good at immune dysfunction?
    frustratednp 17 Replies
    • January 14, 2009
    • 04:33 AM
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  • I agree that it sounds like CFS.
    richard wayne2b 1232 Replies
    • January 14, 2009
    • 02:52 PM
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  • Ur symptoms sound very similar to mine as well. I am still going through diagnosis. Currently, I have Meniere's, FMS (fibro), CFS, and Asthma. My MRIs, nerve tests, blood tests, all show normal. The only thing you didnt mention that I have is flucuating hearing loss and tinnitus. Good luck and just keep pushing the drs to do more tests. The other thing that some drs think I might have is Mixed Connective Tissue Disease. Its something else you might want to look at.Paws
    Anonymous 42789 Replies
    • January 15, 2009
    • 01:33 AM
    • 0
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  • I just reread your original post and noticed something else which could be relevent to your case and is also another common CFIDS thing 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. If you had CFIDS you could of caused things to get worst by overdoing things when you went out to dinner or by any chance did you drink alcohol while out??? Alcohol intollerance is a symptom of CFIDS and for some of us it can make us quite gastly ill for days!! 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. same here as above. I assume being a medical conference you pushed things too hard and over did it. But maybe you had alcohol at the hotel which made things even worst??? I thought i better point this alcohol issue we often have out in case that is adding to your issues. (i do have more to say to your posts but dont have time right now so hopefull will remember to do so later at some point)
    taniaaust1 2267 Replies
    • January 15, 2009
    • 07:05 AM
    • 0
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  • Thanks for the thoughts about the alcohol intolerance. The first night (in August) I had a few sips of a drink before dinner. However in Sept, I had not had any alcohol or caffeine for several weeks as I was becoming more ill. I have done trials of being entirely off alcohol (I usually just drink white wine) and caffeine (I drink 1 cup of coffee daily). It does not make any appreciable difference as far as I can tell. I have done those trials several times to make sure I am picking things up. Also, for the previous posting about tinnitus, I have not had any symptoms of tinnitus or any hearing issues. Thank you for the thoughts though. This is all very appreciated.
    frustratednp 17 Replies
    • January 15, 2009
    • 07:35 PM
    • 0
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  • Hello to all. I had my monthly "crash" during the past few days. This is when I am incredibly fatigued, have a loss of appetite, develop a migraine and am nauseous. It lasts for about 3 days. This has occurred for the past 5 months approx 10-14 days after I receive IVIG. There is some thought that I am experiencing serum sickness from the IVIG. I would be interested in hearing if anyone else has had something similar. A rheumatologist that I know has seen people have similar symptoms with remicade infusions. I am doing research into CFIDS but the pattern that I have established seems out of the norm for this. I am getting a CT of my neck, chest, abdomen and pelvis as well as an ACTH stim test next week and hope to have some answers soon. If Dr. Cottle reads this; I would really appreciate his insight into my problems. Thanks to all.
    frustratednp 17 Replies
    • January 18, 2009
    • 11:36 PM
    • 0
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  • I am just wondering if you recieved the Guardasil vaccine?. I have heard about many similar stories about women and younger girls who have gotten this vaccine.Good luck.
    Anonymous 42789 Replies
    • January 19, 2009
    • 01:11 AM
    • 0
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  • Thanks for the reply. I have been considering Addisons or some other adrenal issue recently. I had normal cortisol levels in Sept but the never got around to a stim test, although it was mentioned several times. I thought it would be easier if I listed the main symptoms right now: fatigue (unrelieved after restorative sleep, at times crushing and unrelenting) heat intolerance headaches (migraines that affect my posterior head, frontal sinuses and cause neck and shoulder pain as well as numbness along my left cheekbone) nausea (I usually associate this with a major migraine) Feeling of limb heaviness especially in the morning Feelings as if I will pass out (usually when I feel the heat intolerance, but sometimes for no apparent reason) Any help is MOST appreciated as I am being my own advocate and primary care provider through all of this! I do have a PCP but she is as puzzled by this as the rest of my specialists are. So I am spending lots of my own time researching possible causes. Thanks again. Hi Frustratednp, This sounds like a b12 crisis just like I have had many times, the most recent lasting 16 years until I found the cause and what cured it. This is an incredibly easy hypothesis to test. You test it by taking the substance. If it is a b12 deficiency crisis an effective brand of methylb12 will hit you like a sledge hammer.http://forums.wrongdiagnosis.com/showthread.php?p=139758&posted=1#post139758We have a reasonably complete list of symptoms, some of which you likely had before the crisis but could have ignored. If it is then methylb12 5mg by Jarrow formulas plus Country life adenosylb12 (dibencozide) and a b-complex (Jarrow B-Right is good) will let you know quickly. If you are like me you will know within minutes of putting these tested brands (by hypersensitives) of natural b12s under you tongue and retain for 45 minutes. You can order these items from www.iherb.com and know quickly. If you want to explore this idea come over to the b12 forum.
    Freddd 3576 Replies
    • January 19, 2009
    • 07:04 AM
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  • Have you considered Fibromyalgia? Good list of Symptoms with descriptions on www.FibroFix.com/Symptoms.html It's an all free site. This is a long post, but I wanted to tell the whole story.
    Anne at FibroFix.com 9 Replies
    • January 19, 2009
    • 05:46 PM
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  • Thanks Fredd. I had my B12 levels checked several months ago and everything was normal. I am still thinking about various supplements though and will research the site you posted.
    frustratednp 17 Replies
    • January 19, 2009
    • 09:18 PM
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  • If you are interested in learning about an all natural supplement that can help you contact me.Nancy
    lovemykids2 28 Replies
    • January 19, 2009
    • 09:41 PM
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  • Thanks Fredd. I had my B12 levels checked several months ago and everything was normal. I am still thinking about various supplements though and will research the site you posted. Hi Frustratednp, What was the level? Here is the fly in the ointment. Serum level is NOT a definitive test for sufficiency. In studies in which admission is by symptoms instead of test results, 2/3s of the responsive persons would have been excluded. In those studies the responsive persons have average cobalamin serum levels over 700pg/ml and some as high as 1500pg/ml. A "normal" level range of 200-1100 is virtually meaningless in that context. The only definitive test is a trial of both active b12s with cofactors. I had been taking 1mg/day of cyanob12 for years to no apparant benefit at all. The very first methylb12 of one of the effective brands was a literal eyeopener. It is because of all the beliefs about b12 that just are not so that makes it so difficult to diagnose. I puzzled over 100 practioners through the years who should have recognized b12 deficiencies; I was dying of them. They were unable to diagnose it to save my life. After all, I had intrinsic factor and was only a little macrocytotic, like a little bit pregnant. And that too went away when the lab redefined it out of existance by raising their alert level to >100 from >96 theyby making my 99.8 MCV "normal" as at >96 they had to alert so many tests that the docs didn't listen. Macrocytosis isn't graded on the curve, just the top 2.5%. It represents something that isn't relative. I had 175 "nonspecific" symptoms that shifted all over the place. The docs ignored most all of those too since they were "nonspecific". They also ignored the several that were quite specific because I had intrinsic factor and was taking "theraputic" amounts of cyanob12, an inactive cobalamin. I self diagnosed with a trial of, by luck, one of the two most effective brands of methylb12 in all of 10 minutes. So if you would like to talk with a whole lot of people with no diagnosis and "normal" tests who never the less are very responsive to the correct b12s taken correctly with the correct cofactors, come talk with us over on the b12 forum and look at the reasonably complete list of symptoms, signs and co-correlates. It's kind of a surprising list to many, largely because it is an international composite list.
    Freddd 3576 Replies
    • January 19, 2009
    • 10:23 PM
    • 0
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  • Drugs, drugs and more drugs. Has anyone ever thought of repairing your body instead of doing more damage with all of the meds.
    lovemykids2 28 Replies
    • January 19, 2009
    • 10:32 PM
    • 0
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  • Drugs, drugs and more drugs. Has anyone ever thought of repairing your body instead of doing more damage with all of the meds. Hi Lovemykids2, That is exactly what I am talking about, giving the body all the necessary ingrediants for repairing itself contained in a number of very specific supplements. For instance, cyanocobalamin, an artificial laboratory mistake in 1948, is a health disaster for many folks. The two natural forms of b12 are anywhere from 100 to 10,000 times more effective and never have toxic effects unlike cyanocobalamin which in some people can deposit cyanide around the optic nerve, killing it. Finding an exact description is less important than finding what works at correcting the problem. As the 4 kinds of natural b12 deficiencies with the natural folate deficiency which is basically inseperable by symptoms, have more than 275 possible signs, symptoms and co-correlates which are generally non-specific, many different combinations are possible and can be given all sorts of names and divvied up amongst the specialists. Which names might apply generally don't matter if they are corrected by the hidden factors. Good luck.
    Freddd 3576 Replies
    • January 19, 2009
    • 11:54 PM
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  • Hi Freddd,Are you a doctor? I am just curious. I have fibro and by taking a nutritional supplement I am repairing my body and now live pain free days and am sleeping like a baby at night. If you are interested, I would love to share with you so you could give me your thoughts and comments. ThanksNancy
    lovemykids2 28 Replies
    • January 20, 2009
    • 00:30 AM
    • 0
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  • Hi Freddd,Are you a doctor? I am just curious. I have fibro and by taking a nutritional supplement I am repairing my body and now live pain free days and am sleeping like a baby at night. If you are interested, I would love to share with you so you could give me your thoughts and comments. ThanksNancy Hi Nancy, I'm a systems analyst, in the health care field since 1982 until 2002 when I became too disabled to keep wporking. At that time I made solving my problems my project. I was successful. I'm an ex ME/CFS/FMS and a whole lot more sufferer. I spent 16 years as a basket case, a couple of decades of decline before that and coming up on 6 years of recovery since then. I no longer have the symtoms or the disability. I could not be diagnosed with much of anything today except some residual neurological damage from years of deficiency. Parts of my feet are still abnormal in feeling and I have one small patch of numbness remaining. At the worst I had footdrop and couldn't balance in the dark and couldn't feel where my feet were. I also couldn't focus my eyes to read. Six months after the crash in 1987 I could finally walk as far as half a block. I do 40 minutes on my Nordic Track 4-5 days a week now. My muscles have healed. Exercise builds capacity instead of causing pain for weeks. Six years ago a two hour shopping trip took a week to recover from. Of the 175 symptoms 6 years ago (from the list over on the b12 deficiency forum) I have 27 left. Most are from the residual Subacute Combined Degeneration that hasn't healed entirely yet (some of the damage may be permanent) and damage from a wreck in 1972 when a guy broadsided me when he ran a red light. An old knee injury would be my only impediment to running a 5k race. Things are not yet perfect but some of that may be accumulated wear and tear and as I'm days away from 61.
    Freddd 3576 Replies
    • January 20, 2009
    • 02:22 AM
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