3 long years and still no answers!

[wonkavision]

His problems all started 3 years ago, stomach pains and dizziness.. His gallbadder was checked. At

first they say that was the problem, but when they went to take it out, they said it wasn't a problem.

time has progressed and he has lost around 120lbs. He has had blood tests done which resulted in a

positive ANA and SSB.. What are causing these I dont know? Still having horrid horrid stomach pains.

Very fatigued, trouble with walking, dizziness, pains in joints. Has had a horrible time with keeping

food down. In result problems with teeth and now a new problem in his throat. Possibly torn esophagus?

Hard time swallowing and pain. In the past couple of months problems with his thoughts and brain have

surfaced. Troubles with short term memory. Problems spelling the right words. Issues with mixing up

the words or getting ahead of himself. Problems talking, problems communicating. Very numb, horrible

sharp pains. Along with a very foggy thought process. Some days seem worse than other days. He has

horrible anxiety and has problems leaving his house. Very bad anger issues where he wants to hurt

others and himself. He is not like that normally. Has been battling depression and suicidal thoughts.

He has had a test for lupus and those came back negative, as well as a ct scan that showed nothing

wrong. He is currently awaiting his MRI results. We have several ideas of what it could be. But he has

no way of earning income because he isn't allowed and can not work, lives with his mother who also can

not work. Money is hard to come by and no one in this country wants to help you if you dont have it.

Getting a medical card and Social Security have been a mess. We are just at our wits end and dont know

what to do. He is in so much pain, he needs something soon. Ideas include: problems with his frontal

lobe, possibly including dementia? Lyme disease, Lupus, crohns.. I also want to point out that he has

seizures, but he seems to be aware they are about to happen and know that they did happen.

[lupiemomof2]

SSB is a blood component found in about 30-40% of SLE cases and also in Primary Sjogrens Syndrome,Systemic Sclerosis,Rheumatoid Arthiritis,Polymyositis and can be found in low titers(like a low pos ANA)in a certain percentage of healthy individuals who never go on to exhibit AI illnesses.


A rheumy is a necessary place to start as they do deal with these issues and take all of the tests you can get copies of so they can see if the titers have fluctuated(they will they can be high,low or absent)so this can help provide pieces to the puzzle.

Sjogrens Syndrome is an autoimmune issue VERY similar to SLE but it also encompasses the eyes/mouth and any other moisture producing glands resulting in tooth decay,breaking,frequent cavities,trouble swallowing,chronic dry mouth and dry eye resulting in frequent irritation and infection/pain.

It can also afect CNS,mental capability,joints,skin and other organs.

The Sedimentation rate test is for measuring inflammation in the body and will not pinpoint a specific area but will tell you if inflammation is present.

The Rheumatoid Factor test is also not just positive in RA but many AI illnesses(primarily Sjogrens if high titer) and will fluctuate depending on activity it  measures the proteins produced by your immune system that can attack healthy tissue.

labtestsonline is a great site that you can look at if you have any questions about what tests are/will measure if you are keeping a list as people suggest them.This will require the knowledge of a really good dr as men are the minority in most AI illnesses but not the exception-it shouldnt be ruled out because he is male only-it should be ruled out because there is no sign of AI illness.The dr is going to have to look at a lot of history,do alot of tests and maybe watch and monitor if nothing conclusive pops out right now.This is common for some to say there is an AI illness there but we cant tell which one yet-you need to be monitored periodically and watch for further developments to complete the puzzle.Very frustrating but often how it happens.

Good luck I hope answers are found soon

[donjoe341]

I understand and believe me I have done the same thing. This is a great place to find out information. People are very helpful here.
I sent you another message as to where and how to find a lyme specialist in your area if you want one. I am praying you  and your boyfriend get help soon.

[wonkavision]

when I say "pushing" i dont mean that in a negative way. I guess I should have worded it differently sorry it was really the only word I could think of at the time. My brain is overloaded with all of this. You arnt the only one who has suggestion the lyme and I greatly appreciate all that you have sent me and talked to me about.

I will tell him to tell to get copies of everything and I have been writing more and more down. He hasn't been checked for elevated rheumatoid or the CED. I haven't heard of that but I will add it to the list of things that people have suggested.

I am also going to call the ILADS people when I have the chance probably tomorrow.

[donjoe341]

I am not pushing lyme disease. There could be many other bacteria that could cause his problems also. I am giving you the information and telling you what to research. You need to make your own conclusions. I can tell you from my experience and the list of your boyfriends  symptoms it is likely lyme or some other kind of bacteria causing his condition. Have you checked out the site for lyme information and symptoms yet?

Your boyfriend hasn't been checked for everything. For instance has he ever been checked for an elevated rheumatoid factor or elevated ced rate? You should make sure you get copies of all the tests for his records. This is very important because this way time is not wasted doing tests that have been done before. You need all his test info if you ever see another doctor. Do not rely on your doctor's office to make sure testing is passed to the next doctor. It ends up being a hassle trying to get them to do that for you. When your boyfriend is this ill he should be ready to answer any questions about his testing especially if he ends up in the  ER. It would also help us help you if you new what he was tested for.

[wonkavision]

They tested him for lupus I guess. Took his blood and he had to wait a little over a week for the results. They said it was negative. He really has no money so even though he knows he needs to got specalists there just is no money :(  People have been pushing lyme disease or gall bladder. but he was checked for the gallbladder and they said negative.. I dunno I feel like everywhere we turn its against him.

[LadyLupus]

Hello again:) I forgot to say that although men having lupus isn't exactly rare it is the minority. Women suffer lupus 90% to 10% men and it may be why the doctors are stumped although the positive ANA should have been a clue to the doctors to research lupus, rheumatoid arthritis etc.. further. Again, I hope this helps:)

[LadyLupus]

Hello:) You said that he has positive ANA & SSB? Thats how I was diagnosed with Systemic Lupus. The pain, fatigue, weightloss, mental fog, depression are all signs & symptoms of Lupus. If you can, take him to a rheumatologist, they specialise in lupus amoung other things:) I hope this helps some. Take care:)

[donjoe341]

Did you say your husband was tested for lyme and it came back negative?
I would pack your husband up and take him to the closest lyme specialist.
I can give you info on how to find one. If you don't do something soon he could suffer permanent damage to his body because of lyme. Lyme disease is very difficult to diagnose by the current testing.
I should know I have been suffering in terrible debilitating pain like your husband and my 4 lyme tests never came back positive. I had all of the symptoms but no positive results. I had to pay for my own I.V. treatment and it was well worth it. I am finally on the road to recovery.
Please look at my journal pages and it will tell you my and my families symptoms along with what we have done about it. Feel free to contact me if you want help searching for a doctor in your area.

[positiveexposure22]

your saying all results are comming back negitive so a tricky one  ,, what do you think it might be  ,, or can you remember when or how it stated  ,, if you keep a track of symptons etc ,, even if pain eases up ,, to what triggers it   ,, i know this may seem crazy but have you tried any holist approches ,,,, id be thinking of reiki  or hypnosis   ,, wont cost the earth and can be very effective ,,, other wise go to another doc   ,, defently speak to your radio ,papers or even tv   ,, you may be surprised who will hear and respond  ,, and may even fundraise   , to cover cost  ,,, im wishing you the best  ,,