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cre8tive 08-03-2010 08:35 PM

In need of a diagnosis
I am new to this board. I have read many interesting and amazing things!
I have been dealing with this health issue for about 2 years, it started with just general not feeling well some stomach discomfort, diarrhea, fatigue, loss of ambition, for 6 months I blew it off as getting older and thinking it would go away-I can not believe how wrong I was/am!!!!

It has steadily gotten worse with new symptoms of joint 'cracking and popping' that I have never had before. Almost constant nausea but I force myself to eat. I have not lost any weight but people tell me I have lost muscle mass. I have night sweats but no fever. I feel flushed at times and it seems like my body is pumping out heat but I never have an elevated temperature, in fact it is usually 96-97 range. I think it is a virus of some sort.

I have such muscle pain all over, the worse being in my neck. It feels like my neck is swelling, it feels tight and when I move it there is this ungodly sound, like crunching of egg shells. It is slowly becoming difficult to swallow. I have a burning sensation along my back up into my neck and on the top of my head (under the skull).

I have had significant hair loss-enough for my family to notice! I occassionally notice blurred vision-(I did have my eyes examined and she said all was normal just need readers)

I get this jolt of pain that just happens out of the blue and it takes my breath away.

I feel weaker and my endurance is so poor (I had to give up volley ball and running with my daughter.) I do not seem to be able to take a deep breath like I used too. I get short of breath doing things I never had a problem doing 2 years ago. It is very frightening! I am so exhausted all the time! two years ago I worked my 10 hour shift then came to my 2nd job and worked 6-8 hours more and still had energy to do things. Today I struggle to make it through my job and as soon as I get home I need to sit down. I force myself to get the bare minimum things done (I am a single parent).

People tell me I look OK but I feel so awful. I see dark circles under my eyes, and the longer this goes on the more fearful I am becoming.

All the doctors I have seen have no answers. Blood work: CBC, Chemistry, Sed rate, CRP, RA, Vit B, HIV, thyroid, hepatitis, ACE, Gluten, heavy metals, Lyme, Multiple sclerosis-from spinal tap plus numerous others are all negative. Slightly low Vit D level, high EBV and slightly high Cholesterol panel were the only things that have shown up. Stool tests all negative.

Studies: MRI head, neck and abdomen all negative, CT scans, EKG and stress test negative. Psych eval was normal too! imagine that lol

I still believe it is some kind of virus. I do not know where to turn next. I am afraid I am going to die before they find something. Has anyone been through something like this or heard or some one who has???

gjoy 08-13-2010 06:47 AM

Re: In need of a diagnosis
Hi Cre8tive,

I hope your getting along okay. I'm sorry no-one has been able to help. There are a lot of us who have been unwell for a long time without a proper diagnosis. I know how you must be feeling. It is so difficult when you feel so lousy all the time but no-one can see it.

I was told by a doctor that they are very good at doing life threatening things but as for problems that destroy your quality of life they don't know much. You are lucky to have avoided the psychiatric tag. Being told you are anxious or stressed is very frustrating.

I have some things in common with you, but the one that stands out the most is the breathing problem. It is so annoying and debilitating. I know if I walk too fast I will get really puffed, so I walk so slow. I feel like I am 104. I also get hot easily so that I sweat, and have lost a lot of hair.

I have recently had a hair analysis test which has come up with very high mercury levels. The naturopath thinks this is what is making me ill. How were your heavy metals tested?


cre8tive 08-15-2010 07:52 PM

Re: In need of a diagnosis
thank you for your reply,
I did have my blood tested for mercury and it was with in the normal level, I try to keep my life on track my mind tells me to get this done and do that but my body just puts the brakes on. I am so amazed at times how badly I feel, I can not believe how I took my good health for granted. I rely on my family more and more each day, I can not imagine going through this without them!!
I wish I knew a medical detective, I still believe my body is giving me clues as to what is so wrong, but I have not found any one to connect the signs.
I need to keep searching.

gjoy 08-16-2010 01:35 AM

Re: In need of a diagnosis
Hi Cre8tive,

From my reading the blood test for mercury is not as reliable as hair testing or urine testing. SingingAngel has a thread entitled possible answer to strange symptoms. Please have a look at it and see if it relates to you.

You are lucky to have family support. I think without that we would have no hope. I worry for the ill people who have no-one.

I'm sure you need to keep on searching. There are lots of people out there with strange symptoms and no solution. Hope you find your answer soon.

Do you drink diet drinks? Aspartame poisoning has been shown to cause weird symptoms. Perhaps you should look at that also,

Good luck,


suncat 08-22-2010 05:34 AM

Re: In need of a diagnosis
Hi, sounds like it could be fibromyalgia symptoms. Have you seen a rheumatologist?

jenj770 08-22-2010 06:59 AM

Re: In need of a diagnosis

Many of your symptoms do sound like Lyme Disease. Because tests are often unreliable for Lyme it is diagnosed primarily by symptoms. Sending blood for Lyme to any lab other than Igenex in Palo Alto California is a waste of time. Other labs do not know how to test, and MD's other than an LLMD (Lyme Literate Medical Doctor) also do [I]not[/I] know how to properly diagnose and test. Lyme can be transmitted by vectors other than ticks, such as fleas, biting flys, spiders, etc. It is now considered to be the most infectious disease affecting the highest percentage of people.

You might want to visit the Lyme board here to do some perusing.

All the best!


cre8tive 08-22-2010 12:39 PM

Re: In need of a diagnosis
Yes I did infact I got a second opinion from anothe RA in a different state. They had no clue and no suggestion either, sure wish I could make that kind of money for no results! LOL Thanks if I do not find any other responses, I make go to Denver to the Fibryo Center or some where for a Lyme Literate MD. It seems that what my only options are at this point. SAD Frustrating!!!

cre8tive 08-22-2010 12:42 PM

Re: In need of a diagnosis
Thank you for the recomendation, getting my local MD to order the test from IGeneX is taking an act of congress eeeiiikkk, we are such a small community and that makes it twice as hard. But I will keep pushing I have to this is my only life!!

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