I DONT KNOW WHAT TO DO NOW!!!!!!

[mathisen]

hi i have been dealing with a bunch of problems for about 2 yrs now....first off in the late summer of 04 after our yearly trip to the beach, i developed what turned out to be menieres disease.....what a long 3 months that was, but it finally eased up after this time and i actually didnt know what it was at the time.....3 months later in january of 05 i started to feel like i couldnt get enought air....i was in no distress but it was enough to take me back to the doctor.....did a battery of test, went to see a resp. specialist, and of course they found nothing....it eventually went away.....a few months later i was diagnosed with menieres disease but was also having chest pain and this really annoying pain in my lower abdomen....i went back to the doctor, she ran a bunch more tests and found nothing......

by this time my wife was starting to get concerned about me mentally a nd physically.......this lasted on and off for the entire summer.....during this time i also got this wierd rash on my chest and neck that lasted a few weeks.....anyway this past september we came back from the beach again and within a few day i developed these nose sores that wont go away and also this foot pain that i get when i ste p out of bed in the morning....i mean every morning including today i get this foot pain.........after a while i joined the gym thinking maybe i was too out of shape......this lasted until christmas

christmas weekend was the worst....i got the worst chest pain, nausea and burping constantly tha t i have ever experienced..... and ive had this on and off till today....in january we took a trip to florida for a week and when we got back it reall y hit the fan.....my arms and legs have been getting numb and tingly since then...ive been having joint pain on and off in all of my joints......and i have been having problems with my digestive tract.....diagnosed with gerd in febuary.........

since febuary i have been to a neurologist and most recently a rheumatologist and they both look at me like i have three heads.....both said i have ANXIETY.....now dont get me wrong i am a little anxious....i mean who wouldnt be....im a 29 yaer old father of three.....i told them its the symptoms causing me to be anxious not the anxiety causing the symptoms....

anyway ana was negative.....reum. factor negative....sed rate normal......b 12 negative.....the rheum. specialist did a ssa/ssb which were both negative.....lyme negative

the rheumatologist said thereis no way i have a problem like lupus or scleroderma.....SO WHY DO I FEEL LIKE c*#p 90% OF THE TIME FOR THE LAST 2 YRS........my wife swears that i have lyme disease


I NEED SOME HELP AND A LITTLE ADVICE ON WHAT TO DO....ive been to the doctors more times in the past year than all my grandparents and parents combined in there entire lives.....today i have mostly some joint pain, a little numbness in my right foot, and still a year later with this annoying pain in my abdomen....



THANKS
JASON

[helloos]

Hi Jason.

After reading your post I can only suggest that you get yet another opinion from a rhemotologist. As you have probably read, Lupus can mimic other diseases and it is very hard to diagnose. I would check the home page of this site on the criterea list and see what symptoms you have match them.

My other thought was maybe a neurologist for the numbing pain that you are getting. Is your regular doctor being able to help you?

I understand that you feel you are getting anxiety from the symptoms and going back and forth to doctors. I too went from cancer docs, infectious specialists, two rhemotologists, neurologist, and regular doctor. Back and forth to each before my diagnosis. Sometims it does take a very long time.

As for the rash that you get, when you get it, I would get a referral to a dermotologist.

In the meantime, keep a list of your symptoms - daily- anything that you can capture on film, take a picture of swelling, redness, rash, etc. so that if you need to show the rhemo and it is not present at the time of your visit, you have the pictures. This helped me alot. Also, get a copy of all of your records for yourself and blood works, etc.

I would say that if you are in pain and it is pain that advil or tylenol does not care of, then I would go to a pain clinic if you have one where you live. No one should be in pain. At the least they can be treating your symptoms.

Do not give up. I know it is frustrating. Do some research with your symptoms, and if you meet the criterea list and you think you may have Lupus, then do some more research on the rhemotologists in your area to see which ones deal with Lupus and actually have Lupus patients.

Good luck and hope this helps a little. Oh yeah, and the stress, it makes everything worse. If it is Lupus, it will make your symptoms way worse, and of course, it makes everything worse anyway. In the meantime, I would try to do something to relieve stress, rather it be take a walk, go somewhere quiet, do some breathing exercises, something to have yourself relax daily and take a step back from all of this. It will help.

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi, and a very warm welcome to you. What I am going to
suggest is not what you want to hear, but it is what almost all of us
here have gone through. I would get a referral to be seen by another
Rheumatologist. Write down each symptom that you have had, and for
how long it lasted , and under what conditions, just as you did here,
only a little more concise. Make a copy to give to him to put in your file
and keep a copy for yourself. date things. Have your questions written down,
with the three most important ones at the top, cuz you may only get time for
three, and paper to write on. Read the data at the front of this site first,
so that you have some knowledge of what you are talking about. If you
need any more questions, just ask, we're here.


Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

[Roberta12]

Jason,

If you want to get in to symptoms vs. symptoms I can very much relate. Just over two years ago I started experiencing numbness in my extremities and pain in my foot (right mostly/early a.m. and after sitting for awile) and sometimes both (this was diagnosed as plantar fascitis. I was also having low-grade fevers, (had off and on for many years). A lot of muscular and joint aches and pains especially my hands, plus a number of other symptoms. This was dismissed by my doctor as, shall we say, "female stuff". But my history of problems goes back to my twenties (now 49). The past twenty years has had its up's and down's . . . but the past coulple of years has been a very difficult road as well - including West Nile in 2004 and then shall we say some very distinctive other problems afterwards.

I too have seen a rheumatologist and a neurologist (the rheumy twice, the neuro once) . I do have a positive ana but because this was "border-line 1:160" initially (has now gone up) . . . the first doctors (including the neuro) I saw dismissed it as nothing or related to "left over" West Nile. You need to know the psychological factors involved in all of this are very real - and trust me - the doctors I've seen (besides the rheumy) would have no problem in making my middle name "ANXIETY".

Jason, I had to make all the appointments myself and fight! One doctor who, by the way, now believes me once told me "You have to stop going from doctor to doctor." It is my understanding that getting a positive ana can take some time and there are some who don't ever get one or it is only slightly elevated but are still diagnosed with an autoimmune disorder. I fought, and am still continuing to fight with this and though I have been diagnosed with UCTD, I know there is definitely more going on.

I am now documenting my physical history, my family history (which is significant), and my symptoms and plan on going into my doctor's next week to see if I can get a referral to a rheumatologist in my area . . . there are only two and it's a 6-9 month waiting period/and you need a referral (I have been going to Denver). . . . You have already been given excellent advice . . . follow it.

I'm going to give you a couple of sites to look up info on and I hope this will be helpful:

http://www.aarda.org/infocus_article.php?ID=15

Link edited out as some proposed treatments would exacerbate Lupus, and contains product promotion and purchase facilities for particular unproven remedies for profit. Lily

http://www.geocities.com/issymissy/facts3p.html?200624

Jason, you need to pursue this for yourself and your family . . . this site is a wonderful and supportive place to come for advice. It has been a "candle in a very dark night" for so many.

Please take care, and feel free to respond or PM me if I can offer any advice or help.

Roberta

[Maia]

Sorry to hear of your suffering. We've all been there unfortunately.

As for the Lyme disease, I did some reading into that and you should try to find
out which test they did for Lyme disease. Most doctors only run one type, and only
if that "screening" test is positive will they run the Western Blot test. However,
most Lyme specialists will start off with the Western Blot test. Also realize that
there is more than one type of tick borne infection other than "Lyme" and that is why
the Western blot test is better IIRC.

Best of luck to you. It is very frustrating not knowing what is wrong with you, and not
getting effective treatment.

Oh, by the way, I've also heard very good things from my doctor having a few
chronic pain cases due to unknown causes responding very well to Cymbalta.
It's an antidepressant but also approved for use with neuropathic pain. I may
try that one myself after I stop breastfeeding...

[Clare.T]

Welcome !
Of course one needs to know the root cause or causes of problems to address them the best way possible but Maia makes a good point about treating symptoms. This what happens in lupus with the use of medicines like neurontin and cymbalta on top of disease modifying treatment.

We can't say for sure what's causing any symptoms but the foot pain you describe does sound very like plantar fasciitis. I had a bout of it once, agonising pain when getting up and putting feet to floor that quickly disappeared as if it had never been. As far as I know it is treated the same even if there is an underlying disease

You may get somewhere by seeing an immunologist or even an infectious diseases expert. You might have to do a lot of homework to make sure you have had all the relevant tests for suspect conditions. There are always atypical cases. Have you seen a gastoenterologist. Very often all other disease possibilities need to be ruled out things like celiac disease

I do hope you get some answers soon - wishing you the very best of luck

Clare

[mathisen]

hi Again and thanks for all of your helpful answers.......yes i have been seen by a gastro doctor...actually i just found out this week that i mighnt have crohn's disease..... style_emoticons/<#EMO_DIR#>/sad.gif this doctor told me that the joint pain can come from this disease but things like numbness and tingling of extremities usually does not.....so now i have to go and have a colonoscopy done at the end of this month.........yipee.......not only that i am going on vacation in 2 weeks to the beach again and i am afraid to go because of being in the sun.......this doctor told me that i dont have lupus so i guess i should relax and havea goood time like i always do.......

anyway thanks again
jason