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don't know what is going on with my hubby

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Posted 8/15/2009 3:13 PM (GMT 0)

Hi....this sight seems really great and helpful!

My husband has been having problems with a lot of symptoms for a few years....he has been to 2 rheumies a neurologist and going to a new rheumie next month.  his ana came back neg on 3/3/09 and then came back slightly elevated on 3/30/09 and his double stand dna came back slightly elevated.  The first rheumie did a ton of blood work and told him that he does not have lupus it might be fibro....so we went to the 2nd rheumie to get another oppinion (we had the test results faxed to him)  he then said it looks like he might have lupus????? so we are know going to start fresh with a new one shakehead   

It is terrible tho he is always feeling like he has the flu, tingles from head to toe all the time, his joints ache terribly, terrible fatigue, his eyes mess up on him sometimes, there is more but does anyone have these symptoms?  We are not sure if it sounds more like RA or Lupus??

We are not sure what to do it seems like these docs just perscribe meds and send you on your way. 

He has been taking hydrocodone for a few years to deal with the pain...he has been off it for about 2 weeks now tho...which just made his pain worse of coarse.  He just started taking Lyrica last night as 6 docs have told him to take it....he has not been wanting to take any meds until he is sure he is taking it for the right reason....but he feels like he doesn't have a choice cause he is tired of being in pain all the time.  Any help or advise would be greatly appreciated...THANKS

Oh his older brother had the same symptoms just a few years prior they have not diagnosed him with anything either however they are leaning toward RA...he is taking the Lyrica and malaria drug and he says he feels much better.

Posted 8/16/2009 3:11 AM (GMT 0)
Wow, two Dr.s with different diagnosises, I too would also seek a 3rd opinion. I have AS and some of the symptoms you mentioned your husband has are the same. Hopefully this new Rheumy will help with a diagnosis and get your husband on the right meds for a speedy remission. Let us know how he goes.
Jo
Posted 8/16/2009 4:02 PM (GMT 0)
Thanks for your responses.......

Jo forgive me....but what is AS? 

Yeah, hopefully this Dr will actually help cause it is terrible and I feel so helpless not being able to do anything other than surf the next to try and figure it out and talk to others.  We have 2 little ones 3 years and 1 1/2 and it makes it hard cause my hubby really feels bad cause he feels like he does not get to spend as much time with them as he thinks he should because he is not feeling good and will need to go lay down....

It is a long wait for the Dr not for another month it is terrible that it takes so long to get in shakehead

Thanks again!!  :-)

Posted 8/16/2009 9:48 PM (GMT 0)
Hi cookie

AS is Ankylosing Spondilitis - Its a nasty form of arthritis that attacks the spine and sacroiliac joints, and in alot of cases causes the joints affected to fuse together. I am going through this at the moment. your hubbys symptoms sound the same - messed up eyes sounds like iritis (sorry - uveitis (?) which is like a side effect. I was initially diagnosed with juvenile arthritis, then osteo-arthritis until they worked out it was actually AS.

While your waiting for the drs give him lots of hot baths, hot packs and support. the drs will get him on a good mix of meds that will sort him out when they work out exactly what it is

Post Edited (Shanno) : 8/16/2009 3:51:43 PM (GMT-6)

Posted 8/16/2009 11:47 PM (GMT 0)
Hi cookiemonster,
AS is Ankylosing Spondylitis as explained by Shanno and the heatpads, hot baths is also great advice from Shanno.
When my son was little and I was bed ridden I would get him to bring in books for me to read to him and sing nursery rhymes and songs, maybe your husband could do this so he doesnt feel so guilty, I also made up stories when my eyes were too sore to read, theres nothing worse than feeling you are letting your kids down because you are unable to do much.
Keep posting on his progress.
Jo
Posted 8/17/2009 6:11 AM (GMT 0)
cookie

Maybe hubby should be on something sustained release? would last in his system longer and he could then control his breakthrough pain with hydrocodone much easier. see a pain management specialist and get ahead of the pain, as opposed to just chasing it with heavy narcotics

Take care and keep us posted!

Shanno
Posted 8/17/2009 2:53 PM (GMT 0)
Thank you for all your replies....this sight is great and I am so glad I found it!!!
Hopeing someone can help with a question. My hubby's dsANA came back at 15 and <10 is normal and his ANA came back at 1:40 is Lupus the only Auto Immune Disease that could have a possitive dsANA? All of his other blood work came back normal. I searched the web and it from what I found it was the only one....any suggestions on any other tests that would help confirm what he has?
Does anyone take Plaquinill? Has it been helpful and has anyone had any side effects? He is taking Lyrica 50mg 3 X a day just stared that on Saturday but 1 of the rheumies perscribed him to take Plaq and Lyrica do you think this would be helpful?

Shanno, sorry to hear about your AS....I hope your docs have it under control and you are feeling good!!

cookie moster1
Posted 8/17/2009 10:24 PM (GMT 0)
As far as I know cookie lupus is pretty closely related with the arthritic family - they are auto immune diseases and lupus isn't the only one that can be linked to a positive ANA ..I know there is a drug called Methotrexate that is used to treat forms of arthritis and lupus as well, though I'm sure the rhuemy has good reason to try him on the mix that he now has him on. I cant comment on the ones he is on though, I know nothing about them. The main thing is for them to find the right dose of the right meds that will work for hubby, so they may try a few different things until the symptoms come under control.

And thanks for your kind thoughts. We are still in the process of getting it under control and it has been a pretty hard slog but we are getting there, Pain clinic in 1 week and wedding in 2 weeks. no pressure there!

The site below I used to see exactly what they were checking for in my bloods, you may find it useful!

http://www.labtestsonline.org.au/understanding/analytes/ana/glance.html
Posted 8/17/2009 10:42 PM (GMT 0)
Shanno,
congrats on the wedding...that is awesome!!!
The docs will get you there soon I hope....just keep on trying.

I know the ANA can be related to many AI diseases but what about the dsANA (double strand)? Is that only related to lupus?
Posted 8/17/2009 11:24 PM (GMT 0)
I'm not to sure cookie, The problem with the auto immune diseases is that so many can have similar symptoms so it can be very easy to mis-diagnose and very hard to pin point the main problem, and a lot of symptoms of the disease can come on pretty hard or be side effects of meds they dump him on.

What I can tell you is (and by all means keep in mind this is just my experience, I'm not a doctor and not diagnosing) that when the AS started nailing me I would get tingles and pins and needles in my legs, my eyes did screw up quite a bit, very irritated and red and I ached horribly in my spine. You say he aches badly. is it all over or localized in a joint or joints? Fatigue comes along because the pain wears you down quite a bit, plus your muscles tense and contract to try and protect the joints, making you much more tense and tired.

Have a read of the info sheets that come with the meds he is on and be mindful of the side effects they can cause - one or more may be caused by the meds. I cut out the part listing symptoms to watch out for when I was put on Enbrel and stuck it on the fridge and it saved my life at one stage as I started getting the more serious side effects (developed an infection) and just didn't realize it was the meds causing it.
Posted 8/18/2009 10:19 PM (GMT 0)
My hubby gets tingling in his entire body pretty much 24/7 and his pain is pretty much in all of his joints but not in his spine....thanks again for your all your thoughts and advice.....thanks for the website!!
Posted 8/18/2009 10:39 PM (GMT 0)
Ouch.....Its not a nice place when they are still not sure exactly what it is....can be quite scary, its just always important to remember that they will find the root of the problem then nail it with the right methods. stay focused on that and you guys will be ok. I to am finding this website to be a great way of venting my pain and frustration with this disease. The people on here are a true inspiration to me, and that really takes the edge off sometimes
Posted 8/19/2009 1:08 AM (GMT 0)
Hi, cookie. I am just about at the same stage as your husband. Confused, scarred and just want to know for sure what i have. I do have fibromyalgia and they said i more than likely have RA. I was put on lyrica and plaquinil and unfortunately my body broke out in a rash all over. Getting off the two meds took a week. I am just now starting to eat somewhat normally again, still haveing some nausea in the morning.

Oh, all the symptoms you described on your husband, i was surprised to hear he has nausea/ and feels like he has the flu. I would feel this way before i even started seeking help from a doc. Is that the same for him??? Cause you do get real nausea sometimes from the drug until you get used to them.

I'm going to the rhuemy tomorrow. Scarred to death what she will do this time. i just don't like the unknowing. confused

Well, good luck to you. Please let me know how it turns out for him.. Laura wink
Posted 8/19/2009 3:28 AM (GMT 0)
Hi gonuts, I am sorry to hear about what is going on with you.....don't be scared or nervous.....hopefully your rhuemy will figure something out. Remember you don't have to do what they say....not saying that you shouln't just saying you need to follow what your heart believes and listen to your body....the docs can't feel what you feel and 1/2 the time i don't know if they even listen. I am sure that they will get something figured out tho....from what I understand there are several options as far as meds go. Let me know what your rhuemy says K.

As far as my hubby he has been on the lyrica since saturday and so far it has caused him to be very dizzy, nausia sometimes and headaches sometimes. It seems to help with his tingling for a short while after he takes it and then it comes back again so hopefully once his body gets use to it all the side effects will subside and the tingling and joint pain will subside too....we can only pray!!! He has had the dizziness, flu symptoms, tingling from head to toe 24/7 and fatigue for a couple years at least. Thanks cookie monster1

Shanno, just to give you an update my hubby went to eye doc today and they did a full exam including dialation....the doc said all looks good....I was a little nervous but I am so glad it turned out good. Keep me posted on how your pain mngmt goes next week
Posted 8/19/2009 4:08 AM (GMT 0)
Hi cookie thats good news about his eyes

And of course will keep you posted about the Pain management Clinic, think i am more nervous about that than my wedding at this stage!
Posted 8/20/2009 2:37 AM (GMT 0)
Hi cookie, Well, I went to the rhuemy today and i asked her if i absolutely without a doubt have RA. She said you have "Fibromyalgia with RA and Symptoms of Lupus unconfirmed" So now i have to wonder if it also have LUPUS shakehead I am praying so hard that i don't, But if i do I suppose i will have to deal with it one day at a time.

I too started Lyrica again, she thinks the rash came from the Plaquinil. Also she put me on 10mg of prednisone for 2wks and then 5mg after that. I hope it works. She was going to see about an infused med I don't remember which one, but it is like remicaid... the only thing with that is with my asthma she said it can affect the breathing and cause an attack.. I told her no way. I have no warning and it just cuts off my breathing. She said when i go back there is something else i can take with neurontin for the nerve pain. I'm sorry but i don't remember the name of it.

I really hope all works out for your hubby... please keep me posted.. I think between the two of us, i would feel better knowing were in this together. :-)

Thanks, Laura wink
Posted 8/20/2009 2:46 PM (GMT 0)
Hi gonuts, I am sorry to hear about your diagnosis.....but keep your head up hi Laura, these AI are controllable and once your doc gets you on the meds that will help you from what I understand people live a full and normal life....so that is something to look forward too!! Why is your doc waiting for you to come back to give you the med? Is she waiting to see how the Lyrica works? Hope the Lyrica works for you. I will keep you in my prayers!!! cookie
Write anytime K
Posted 8/20/2009 8:07 PM (GMT 0)
Awee, You are so sweet. and yes she wants to make sure i do not have side affects again. just started the lyrica last night, so far so good. I will certainly be looking for you in the forum. I will say many prayers for your hubby too. Thank you so much for listening. You have alot to deal with too. You also can post to me too. Always willing to help if i can. Laura wink
Posted 8/20/2009 8:49 PM (GMT 0)
thanks gonuts.....this forum is great and i am soooo glad i found it.....maybe we can all help each other through our symptoms and what our docs are doing for us.
talk soon cookiemoster1
Posted 8/21/2009 12:45 AM (GMT 0)
Man I think I have it bad but this Lupus business sounds a whole lot worse.

My fiance sometimes freaks out a lot when i am experiencing bad bouts of pain, and its always the same reply: Look I know it seems bad but at the end of the day its just pain. I count myself lucky I don't have leukaemia or something like that.. I think it gives her a bit of food for thought..I think this forum is great too
Posted 8/21/2009 2:31 PM (GMT 0)
turn Hey, shanno and cookie, I am really glad i found you two. Shanno I too am going for some sacro lilliac xrays. My rhuemy thinks i also may have AS. This is so Weird that we all have such similiar symptoms. I really find i reasuring to know that i am not going through this horrible battle alone. And has someone did say, I certainly can be so much worse. But just to know there is someone else out there fighting this battle and trying to figure out the truth, well, it really helps me to know we're in this together. Truely bless you two for being there for me.. :-)

I am going for blood work for Iron my primary wants. WHatever. So much bloodwork. I'm starting to feel like a pin cushion.

Talk later! Take care! laura wink
Posted 8/25/2009 9:05 PM (GMT 0)
Hi Shanno.....just wanted to see how your pain clinic apt went? Your wedding is soon right?
cookiemoster1
Posted 8/26/2009 3:16 AM (GMT 0)
confused hi shanno, I was wondering if your eyes would just go fuzzy on you at no apparent time. just plain blurry? And my legs are tingly and numb and so are my feet and hands. does this affect your arms as well as the legs? I would really appreciate your input. :-)

OH, and good luck on your wedding, I must have missed that or forgot about it. fibro fog again. that darn stuff. wink

ty for being there. Laura
Posted 8/30/2009 10:58 AM (GMT 0)
Hi Gonuts

Usually I get irritated eyes...not blurry though I do have moments where it seems I have a harder timer focusing (I wear glasses by the way). With the legs if i sit too long in a certain position it goes numb and tingly. when i sleep my arm seems to go numb even though i dont sleep on it? I have pain in my right wrist that comes and goes which my rheumy has just diagnosed as 'Painful right wrist'

Its weird as my MRIs and Xrays showed signs of fusion, though no inflammation and 2 reports say 'Evidence of activity in the L1/2 region etc which is of uncertain signifigance" which i wanted clarified at the pain clinic but they did not - I'll put it in a new post

cookie: I will post about my weeks experiance in a new post...What a week!
Posted 8/31/2009 1:33 AM (GMT 0)
Thanks shanno, I really appreciate your help. Just to mention I have this leg problem usually when i go up and down stairs or standing and walking. That's why i think its my lumbar... but i'm not sure. confused

thanks again Laura wink
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