How do we get a diagnosis?

[MIAdvocate]

I'm trying to advocate for my partner, a 42 year old man who has had chronic pain (head, neck and extremeties), mild Raynaud's phenomenon and petechiae most of his life (all of which have been dismissed by doctors).  Finally this past fall (2009) he began what very much resembles an autoimmune disorder flare-up.  his pain has become so intense that he can barely function (Tramadol and an NSAID make it painful, but possible to at least drive and get around his classes).  He's gone from running 4 miles a day last summer to where a short walk exhausts him.  His Raynaud's has gotten so bad that his toes looked like permanent black bruises throughout the winter.  His skin has grown increasingly cold and clammy, as if he's losing circulation, and he's finding it increasingly difficult to concentrate.  He has terrible gastrointestinal pain, frequent diahrrea (even before he was taking pain meds), and little to no appetite.  What's really odd is that he has developed (in the last two months) what for all the world looks like Multiple Eruptive Miliae all over his body, even though it's incredibly rare. (I posted a question specific to the MEM on the Dermatology Forum).  

Here's the trouble; he can't get a doctor to take it seriously.  A visit to the emergency room when the pain became extreme resulted in an x-ray showing "arthritic changes in the neck) and a discharge.  His GP suspected he had vasculitis, but only did a basic blood panel before ruling it out.  His ANA was positive (1:160) but all others were normal (not sure which ones were done, we're working on getting access to his records).  The GP then settled for just prescribing pain meds.  After my partner pushed for a referral he was sent to a Rheumatologist who mis-identified the petechiae as cherry angioma (he insisted that petechiae blanch when pressed!), glanced at the month-old lab work, then told my partner that he absolutely didn't have an autoimmune disorder or vasculitis, and that the pain was from stress and not getting enough sleep. (we're filing a complaint against him for substandard care).  He's trying to get another referral (this time to a Dermatologist) from his GP, but it'll be another week, then more time before the referral appointment.  We're both getting really scared that no one will identify and treat this before it kills him.   He has additional obstacles in his way, including a mental health disability (PTSD) and terrible insurance (Medicare).  Doctors who will see him at all are generally dismissive, either because they believe he's a hypochondriac, or because they won't get paid well for treating him.  So we're taking it into our own hands, and since I'm a pretty dogged researcher, I'm doing some legwork as his advocate.  

Does anyone have any advice on the best way to speed the process?  What tests or procedures should we be demanding to narrow it down to or rule out an autoimmune disorder?  They don't seem to be taking his history or symptoms as seriously as test results, so which ones are the best indicators?  Time may be a factor, so switching GP's may not be an option (even if he can find another one willing to take him, and even if the new one is more willing to help).  Is it worth trying to get a research hospital involved?  We took pictures of the visible symptoms (Miliae, Petechiae, Raynaud's) so that we have proof if the symptoms worsen, but what other evidence can we gather?

Thank you for any help you can give.  It's so empowering to know we can reach out to communities and experts, so that we're not completely dependent on a handful of overworked doctors to figure out what's wrong.  

[LazyMoose]

One more thing. Many continue to have symptoms even though they have 'normal' labs on T4 med only. For some, adding a T3 med to the T4 med is life changing. There is also natural dessicated (pig) thyroid that many people feel better on. I suffered for years on synthetic T4 med only, despite "normal" labs.

[LazyMoose]

As stated above by thyroidian, get antibody testing for Hashimoto. Cant just go by TSH; hogwash. Need Free T3 and Free T4 tested to properly check thyroid levels. Many docs dont get that part.

[thyroidian]

To test for hashimotos thyroid, you need to get your thyroid antibodies blood test done.
This is a simple blood test, Because you can have high antibodies, and thyroid blood levels can be normal.
Hashimotos, is an autoimmune thyroid illness, usually diagnosed by high levels of antibodies to the thyroid.
It may be useful to get these done, especially with you saying this man is hypothyroid,and takes thyroxine.
Some doctors dont do further testing once they find an answer, but already being hypo, there is a possibility this man could have hashimotos
Good luck
Keep me posted
Nicola

[proplady]

I can certainly relate to your feeling that dr's are not taking your partner's symptoms serious. I have been extremely sick for almost two years. During the first year I lost weight, lost all energy, and basically became home bound. In jan.08 I started having extremely painful vascular scalp pain on the right side of my head. My head hurt so bad and was so tender that I had to remove the right ear stem from my glasses and also place my hand on my head and apply pressure when I coughed. My temporal arteries were so painful I could barely touch them. I soon developed a "goose-egg" bulge on the side of my head and it is still there.  As time went by I began having other sypmtoms such as joint and muscle pain and stiffness. I also have pain in many other vessels in my body like the top of my hands, various places on my legs, my ankles, etc. I also began having the same vascular symptoms on the left side, but it never was as severe as the right.  My temporal pulses have been absent for months and the vessels branching off the temporal arteries on the sides and top of my head are now hard. That's not to say the pain has subsided, my temporal areas are still very painful and I have daily headaches. I have been to 10-12 dr's and have had some very heated discussions with most of them. Instead of being an advocate for my health, they do everything in their power to dismiss my symptoms.  I have yet to be seen by a dr. with an interest in finding the true cause of my illness. I have researched vasculitis for over a year, and continue to be shocked at how little most dr's truley know about the disease. I am in the same position as your partner.  I know I am sick and the symptoms are now going on two years. What irreversible damage has this caused? I worry also that I will never get proper treatment untill something life threatening occurres. Also, the more dr's he sees, the less a new dr will be willing to listen and try to help him. Their opinion is that if you have seen 10 dr's and they found nothing,  there is really nothing wrong. What they fail, or more likely chose to ignore, is that out of all those dr's very little was done to find a diagnosis. The only advice I can share with you is to continue making appointments and pray you will eventually find a caring and competent dr. I know that is not very helpful, but it is the only choice we have.

[MIAdvocate]

I thought about Hashimoto's, but his TSH levels were just checked a month ago.  He's been hypothyroid for years and his dose of levothyroxine has been pretty steady with no variations in his TSH.  If his thyroid isn't degrading, is Hashimoto's still likely?  

[LazyMoose]

Have you though of something a little more common like Hashimoto hypo thyroid? Some symptoms you describe are very similar and easier for a doctor to check.

[want2bik1]

The fact that the doctors cannot put a name on the disease is very familiar.  During one of my many trips to the emergency room I was told I showed signs of MS in my upper body but after the MRI's and CAT scans they couldn't anything.  If they can't see it then it doesn't exist.  My doctor told me it was just old age and I would have to live with it. When I investigated diseases which had similiar sympthoms as MS I came up with mercury poisioning which seem to fit since I had a mouth full of mercury.  I got a book by Tom McQuire "Mercury Detoxification" the natural way to remove mercury from the body.  After I started taking these natural supplements all my sympthoms disappeared.  I went to a mercury free dentist and had my teeth taken care of.  I was lucky the doctors couldn't find anything because if they had of put a name on the disease they would have given me drugs to hide the problem and I would still be sick.    

We are made sick by what we put in our bodies.  Eating a diet consisting mainly of raw fruits and vegetables gives the body what it needs to clean up the toxins.  I would examine the enviroment and see if there are things in it which could be considered a toxin.  Trouble with the mouth like bleeding gums, recent vaccination, clean air, clean water, can you relate the onset of the illness to anything which changed in his life.    I would get the book "Prescription for Nutritional Healing" which will give you natural supplements you can take for healing.  Google words like Hal Huggins, Paleo Diet, Fasting, Body PH, Body Detoxification and Oil Pulling and you will get information on things you can do to help your friend.

Wanting to sleep and not eating is an indication of illness.  It is a form of Fasting which is the bodies way of healing itself.  Animals do the same thing when they are sick.  They lay around, drink water and sleep.  We are constantly putting bad things in the body and the body must get rid of this stuff.  To name a few amalgam (mercury) fillings, root canals, vaccinations, transfats, hydrogenated oils, drugs, artifical sweetners, tobacco.  Read the ingredients labels on the back of the process foods and see if you can understand what is being put in this stuff.  When you get too much of this stuff in the body you get sick.  I do not know what kind of supplements your friend might be taken but I take 1 gram of vitamin C with each meal.  I feel it is important to clean up the free radicals.  The things we do in our life give us the health we have.  Illness can be help by putting the things in our bodies which our bodies need.  The body can't be healed overnight but following a good diet should show improvement over time.  Good Luck.