How long can it take??

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damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 9/12/2010 9:34 AM (GMT -7)   
Hi everyone, I sure hope you all are doing well this weekend! I'm hanging in there although very frustrated right now. I have alot of weird things going on with me (don't we all...lol) anyway, as I have posted before I have alot of increased pain everywhere, lumps and bumps and swollen veins, strange rashes, absolutely no energy and now pretty much all of my lymph nodes are swollen (neck, above collarbone, under my arms and the groin area). My blood work has been kind of strange for the past 4 months, High SED rate between 40 and 70, high WBC between 13,500 and 11,600 and now 20% atypical lymphs.
 
I know alot of this points to an infection, but I am showing no signs of one, no fever or sore throat etc. and you would think after 4 months if it was an infection I would have some other signs. My thyroid is being wacky, and they are still thinking Graves but after my scan they think it's not that bad yet. I will be seeing an endocronologist soon for that. I will also be seeing a surgeon on Wed. to schedule a biopsy of my lymph nodes and a possible bone marrow biopsy to rule out lymphoma and luekemia. The only other symptom I have of these besides the swollen lymph nodes is the rash and my skin itches like crazy all the time. So, I am a little scared that it might be one of these cancers.
 
The one general concenus (sp?) between all the doctors and specialists that I have seen (which includes a rheumy, a neurologist and a dermatologist) is that I have some sort of auto-immune disease going on, probably more than one and most likely a connective tissue disease. All I keep hearing is "Yep, you got something auto-immune going on" My blood work is not cooperating as far as my RA factor comes out negative as well as my ANA. But my SED rate and the other test for inflamation (CRP maybe?) keep coming out high.
 
So my question is, to all of you that have an auto-immune disease, how long did it take you to get a diagnosis? Any suggestions on what tests I could have my doctor do? If the biopsies come out normal, my doc is at a loss as to where to go next. I am thinking another rheumatologist as the one I saw only checked for RA. I am sorry this turned out to be such a long rant, but I am just so sick of feeling so lousy, and hurting and having all these wierd things on my skin that I just want some answers. Any input would be much appreciated. Thank you in advance and take care.

Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13469
   Posted 9/12/2010 10:42 AM (GMT -7)   
Shannon, AI diseases are tough to dx and as I said before most drs want to be positive when dxing one because of what it can do to a person with health insurance. Most will not give a dx if there is any kind of question in his or her mind with the test results not being positive for a dx. It was a year and a half before my gastro put crohns down as a dx, although all of my treatment was for crohns disease. It was well over two years before the lupus dx and 2 rheummy's and about the same for the psoriasis and psoriatic arthritis. The only dx I got fast was for ulcerative colitis but my entire colon was full of ulcers and the gastro said there was no question what it was. And the biopsy confirmed it all. Everyone I know with an AI never got any quick answers and most all said it was two years or more before they were actually given a dx. I think your drs are headed in the right direction at this point. You do seem unhappy with your rheummy, so maybe you need to get a 2nd opinion in that dept. I know this is not what you wanted to hear but so far this is how it has went with me and a whole lot of other people. It is very frustrating and worrisome not knowing exactly what is wrong any time. Just try to hang in there the best you can. Susie

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 9/12/2010 12:50 PM (GMT -7)   
ANA is a test for lupus, not RA so he didn't only check for RA. It took me nine months from when I first got sick to the point where I had a swollen joint and positve RF.
Some people never have positve blood tests. Diagnosis can be tough. If you like the rhuematologist you are seeing and feel he/she is listening to you then stick with him if not then find a new one.

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 9/12/2010 4:42 PM (GMT -7)   
I wish I had answers for you. I can only offer encouragement and support during your time of stress. If I had any words that would make you feel better, I would give them to you.

As it is, however, I just wish you all the best!
Retired Mom

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 9/12/2010 6:05 PM (GMT -7)   
Shannon, I don't have any answers or ideas for you, but I thought I could at least share a hug with you!

{{{{{ Shannon }}}}}

I hope your doctors are able to find some answers for you...I'm sure it must be frustrating to feel so awful and yet not know why for sure. I often feel like that...despite everything that's been done so far, my doctors are at a loss as to "why" they can't get rid of the pain. They know there are severe trigger points that are knotted up in my pelvic area...but they can't make them go away.

Hang in there Shannon. I know this must be terribly frustrating for you, and painful as well, but don't give in. We're all here to cheer you on, so don't give up!!!

hugs,
Pam
DX: Fibro, Severe Myofascial Pain, Chronic Pelvic Pain, Surgical Adhesions, IBS, IC-PBS, Carpal Tunnel (both wrists), FAI, Reynauds, Opthalmic Migraines, Drug Related Hot Flashes, Physically Unable to Vomit due to Nissen Surgery, Extremely tiny and scarred veins (hard start for IV's)

Meds: Oxycontin, Tramacet, Cymbalta, Cesamet, Flexeril, Clonidine plus Vitamin D + Multi daily

MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 9/13/2010 12:37 AM (GMT -7)   
Oh Shannon , I'm so very sorry your having such difficulty , you are a wonderful lady ,and I'll be praying you get some answers . I'm sorry I've never heard of symptoms like your having but I'm thinking of you and praying you'll get some relief very soon .You post as often and as long as you need to Shannon , you are loved here by me and many others and we care very much how you are doing . I'm thinking of you my sweet friend . Love You Lots , Mikel
HIV+. meds - epzicom, Kaletra . oxycontin as needed , indothemiacin . hip replacement surgery done !!! Staples out , a little redness , adjusting and hoping for the best .

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 9/13/2010 4:28 AM (GMT -7)   
Thank you all so much for your responses and words of encouragment. They mean so much to me right now. I kind of knew I could be in it for the longhaul, with my blood tests not cooperating. I know I need to have patience and eventually they will figure out what is going on, it's just so frustrating at times. Thanks again everyone and I will keep you all posted. Love you all lots...take care.
Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 9/13/2010 4:08 PM (GMT -7)   

 

Dear Shannon,

     Good afternoon *warm hugg* It sure is good to hear from you. I am terribly sorry you are in so much pain. I wish they could at least ease your discomfort while they are investigating. It doesn't seem fair you have to endure thought all the uncertainty while in so much pain.

     I wish I knew more about auto-immune diseases. I have had a constant low grade fever for over a year now but the endocrinologist and even the disease specialist were never able to find the cause. When my spine began progressing rapidly they started veering towards the genetic side of things. I do not know about auto immune disease, but I hope with all my heart they can get to the bottom of things. Surely you must be exhausted by now.

     Not knowing, for me at least, is the hardest part. When your body is detioriating, and the very serious symptoms keep progressing it is hard to not be afraid. Watching it happen to your own body and only able to call it "It" pushes sanity to the very brink. I wish I had something useful to offer you in the way of advise, but I don't. All I do is write down how I feel about the frustrations and write down new symptoms / progressed symptoms as they occur. I find that as so much happens daily I tend to forget to tell my doctors what has happened. ...sometimes I feel so disconnected when I go in, it is hard to even pay attention to what they are all doing and testing for. The diary helps me to stay grounded somewhat. To talk about the progression with my diary without seeing worried faces or confused and frightened stares helps. If only a little bit.

     I pray they find out what is happening to you. It isn't fair you have such heavy burden on your shoulders. With so much pain and such long days surly you are exhausted to your very core. I do hope you can find a few moment where you can rest and not think of your body. If only for a moment.

     We all care for you so much. Your so strong and courageous. PLease, stay strong. Know you are in our hearts and prayers.

*warm hugg*
      dani

    


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 9/13/2010 8:01 PM (GMT -7)   
I think you've had some excellent answers. Auto immune diseases never seem to fit their exact symptoms, everone seems to be a bit of a mixture of signs and symptoms which makes it really hard to get a definate diagnosis. It sounds as if your combined specialists are on the right path, trying to scratch off diseases as they can.
I know I've never slotted neatly into my diagnosis hole either, having a mixture of RA and PSA symptoms as well as some Lupus symptoms, my rheumy feels as long as we get the disease to stop progressing we're on the right path no matter the diagnosis.
Talking to others with ankolyosing spondilitis and Psa and RA, we all seem to have overlapping symptoms but very similar treatments, mainly to get that inflammation down.
I'm sure your specialists will try to get yours down too, its the inflammation that can cause such damage.
But big hug for you, I know its frustrating, but sometimes you just don't get nice neat answers, lets hope they come up with something treatable for you soon, all my best wishes, golitho

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 9/14/2010 4:25 AM (GMT -7)   
Thanks Dani and Golitho, as always your wise words have helped me more then you can know. I am finally realizing how tough this whole auto-immune stuff is to dx. I just need to reach inside and find that extra patience I need right now, and know in time they will figure me out. Thanks again everyone for all your replies and information, I really appreciate you all!
Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3
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