Really not sure what to do anymore! Can anyone help me?

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NikiS
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Date Joined Mar 2011
Total Posts : 129
   Posted 5/30/2011 8:45 PM (GMT -6)   
I have not been online in a couple weeks... been really frustrated about things. I don't know if anyone remembers me from before, but I have had swollen lymph nodes, high RF factor, severe pain in my bones/joints, and extremely weak along with a lot of other weird things like rashes, sores on my head, etc... But to make a long story short, there was a big question about whether it was Lupus or not and I went to a rheumatologist who did a bunch of bloodwork primarily for Lymmes disease because he saw an old tick bite scar on my leg and then told me that everything was normal and I didn't need to come back, but when he sent my bloodwork paperwork back, the RF factor was still well above normal but slightly lower than the first time.

The first time they had taken it I was not on steroids, but I have been on them for around 9 weeks now (very high doses) which is the only thing allowing me to get out of bed at all from being so weak. Then my new family doctor gave me tramadol to help with pain and neurontin. For the first time in probably over a year, I had a full night's sleep with the neurontin--it really helped.. but after about a week it became less effective during the day so she upped my dose to 3 pills a day which is helping a lot. Now I am really scared because I will run out of the prednisone which I have been taking 20 mg a day (morning and night of 10 mg each) at the end of the week and I am already where if I am even late on a dose I start getting too weak to move too much. All my doctors are telling me I have to come off the steroids and I don't have Lupus because I had a negative ANA test which they said tests for it. I don't know what to do anymore.

My lymph nodes are so swollen that my family doctor says she thinks it might be lymphoma and is having an MRI done on June 6th--but that is a week away from being off the steroids and I am trying hard to keep up with my schooling in the doctoral program because I don't want to give that up. I have worked so hard to get through school this far and kept good grades too. I am just beyond frustration with doctors!!! I feel that none of them care at all. I need a referral to see another Lupus doctor that is also a rheumatologist but since this is a new family doctor, she is acting kind of weird about giving me the referral since she thinks it might be lymphoma... but if she was really concerned that was what was wrong with me, why has she made me wait almost a month for the MRI?

I feel like they don't understand at all how much this is ruining my entire life!!! I just want to be able to get out of bed in a day and not be in so much pain or so weak that I can't! I have a little 17 month old son that depends on me and while I have been on the steroids I have been playing all I can with him so that he knows how much he means to me--but what happens when I run out and can't get out of bed again like before? I am also working on my school work as hard as I can to get ahead because I don't know what I will do when I come off of them. I have no idea why the prednisone works such magic for me with my situation--but it does. I need a doctor that really understands me and can help but don't know of any that really do care at all! I just need someone to encourage me right now. I am so down about all this and just at the end of my rope again with frustration.

I have been having a couple really good weeks here lately and so scared now that it is all going to end because none of these doctors care or believe me because things aren't showing up in my bloodwork the way they expect it to! Even when I had osteomyelitis as a child--I never had a fever, no high white count, no nothing in my bloodwork! Yet it was in late stage by the time they put a needle down in my hip bone and found it! Same with my grandmother's brain tumor (realized it was cancer only 6 weeks before she died because they didn't see anything in her bloodwork and kept telling her it was a pinch nerve) and same with my grandfather this spring who died within 16 days of being diagnosed with an aggressive form of leukemia and had been sick since October but nothing would show up for him on any tests!!!

I am not planning to sit around waiting to die of something if it does not show up in my bloodwork. I love my son and my husband and I want to live!!! I feel like these doctors don't care and would just be like "oh well, we did all the test right" if something happens to me--but they won't listen to me when I say what is going on is not normal and it is really bad right now!!! Can anyone help me please?!!! Nicki





(post edited for easier reading. Please take note for future use, and split your paragraphs up into smaller units for easier reading)
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Post Edited By Moderator (Screaming Eagle) : 5/30/2011 11:18:08 PM (GMT-6)


Snowbunny21
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Date Joined Jan 2010
Total Posts : 3557
   Posted 5/30/2011 9:42 PM (GMT -6)   
Nicki...I'm so sorry that everything has been happening to you...

I hate to ask a huge favor...but if you could separate your post into paragraphs....it would make it REALLY easier to read for everyone...It's easy to do when you are typing...like every 4 or 5 sentences....just hit the enter button a few times...and

Here ya go...next paragraph...I'm sure it's hard to type...but I want the most people to read your thread...

I would think they would want to perform an excisional biopsy...this is the fastest and most usual test for lymphoma...or the do a needle biopsy depending on the spot..

What specifically are they using the MRI test for? I don't see that corresponding with the lymphoma...

The best part is that prednisone is working so well for you...so that means there is obviously inflammation that it is helping with..

Try not to worry too far in the future...that will only provide more stress in your life and more pain...

Just keep pressing to see the appropriate Dr.s...and make sure they are doing the right tests....I would ask them and take notes..also bring someone with you to these Dr. visits...

Ask.."WHy are you ordering an MRI?"....Why is someone not doing a biopsy if they are worried about lymphoma...

I know it's frustrating...but it sounds like they have been trying to weed out one condition at a time...Lupus...Lyme...and now going forward...if there isn't anything on the test results...they sometimes get stumpted themselves....so it's working with them as a team to get to the bottom of what all this is...

Hopefully they can continue your prednisone to give you some relief...


Thanks again for checking in...sorry it's not a good few weeks...WE are thinking of you here...

Hugs...

grandmaroses
Veteran Member


Date Joined Jan 2011
Total Posts : 1355
   Posted 5/30/2011 9:55 PM (GMT -6)   
Hi Nicki,

Sorry you are dealing with so much, I would also suggest bringing someone with you to appts, since I started doing this everything gets explained thoroughly. I remember a few years ago I was taking prednisone and I felt like superwoman I could work 10-12 hr days and then come home clean the house, make dinner, do laundry, have a date night with hubby and after I tucked him in I still had energy to wash floors. I was so disappointed when it ran out.

Take care
Rose
Take care
Rose



Insulin Dependant Diabetic, Fibromyalgia, Gerd, IBS, Sleep Apnea, COPD, Spondylolistesis, Diabetic Neuropathy, Fatty Liver, High Cholesterol

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/30/2011 10:53 PM (GMT -6)   
Nicki....
 
I'm sorry you are suffering so much.  It IS so frustrating when you are sick - and, yet, you don't have a firm diagnosis.  This exact same thing went on w/ me for 1 year when I first got ill at 19.... then I got better (I had a severe reaction to the Hep B Vaccine); then I got severely ill again at age 30 - and it took over 3 years to start getting a firm diagnosis.  I was tested for everything, too, under the sun.  Lymphoma; Lupus; RA; MS; and on and on. 
 
So, I understand the frustration completely.  The only advice I can give you is to hang in there and just keep advocating for a diagnosis.  If a door gets shut, find another one to open.... be it another doctor, a different test, etc.  That's what it took for me to get to a diagnosis.  There were definitely times I wanted to just give up.  But I knew getting proper treatment depended on me getting diagnosed.
 
As SnowBunny said, the reason the steroids are working most likely, is that you do have some level of inflammation.  I was on/off prednisone for years - it's a great medication - but can have some wicked side effects. 
 
Again, I'm sorry you are in such a frustating place :(
Take good care --Tina
 
Dx: Disabled due to many, many health/pain issues
Meds: Heart meds, Effexor, various Pain Meds (I've literally been on them all)...and on the list goes; intrathecal pain pump candidate

Personal: Christian wife and mom; I have six sons...and two "surprise" blessings - identical twin daughters (born 9/2010)

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 5/31/2011 5:52 AM (GMT -6)   
Thank you everyone for your support!!! My doctor is doing a "cervical MRI" to look at the swollen lymph nodes in my neck. They are getting fairly painful (not real painful like my bones feel in my legs and back especially) but pretty uncomfortable. Without the prednisone, the left side of my neck is swollen out to my left ear--and on it is still pretty puffy.

I think she wanted to "see" it first before she orders a lymph node biopsy (I think she is planning to take the whole lymph node out if I understood her right). I am just so worried about coming off the prednisone because everytime I do, then I can't get out of bed--literally!!! I am so weak that I can't move and the past couple weeks have been such a blessing.

To be able to get up and play with my son and work on my school work (and finally get mostly caught up after 3 months of getting behind in it) and all... I just wish these doctors could have more understanding and help for what I am going through right now.

They just keep ordering the next test a month out, another test a month out from that--and it drags on and on without really addressing the symptoms at all.

Thank you all for all your help and comfort! Reaching out to you helps me a lot!!! Nicki

suesueky
Regular Member


Date Joined Apr 2011
Total Posts : 87
   Posted 5/31/2011 8:24 AM (GMT -6)   
Hiya Nicki

I have been wondering where you had got too, I am so glad you have posted lovie. I can understand how frustrating it can be when you are telling doctors what is happening and they do not listen ( Remember they do think they are Gods LOL) But please hang in there sweetie until they listen and keep telling them how you feel and what is helping you ( I know I have done this till I am blue in the face) Remember lovie you are a strong willed lady with everything to get up for and live for, I am so proud to know you. I am sure they will find the problem soon and be able to help you in the way they should.

Remember lovie we are here for anytime with well wishes, help, to listen and especially for you gentle (((((((hugs))))))). I will keep you in my prayers and thoughts and hope you get some relief soon honey.

xxxxxxx
Suesueky

Disc degenerative disease, L3/4 board disc bulge, L4/5 board disc bulge with significant nerve root compression on right L5 nerve root and also DDD at L5/S1. I also have an enlarged uterus with fibroids and have been a sufferer of psoriasis now for about 8 years.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/31/2011 9:26 AM (GMT -6)   
Maybe ask to see an endocrinologists and ask for thyroid testing...low or high
thyroid levels can make you weak and tired...get your thyroid checked out...
that's about the only thing I can think of. don't be afraid of the mri, it'll go
by fast and ask for ear plugs they are loud...to me it sounded like indian drum beatings
If you are afraid of small places then let them know as they can give you something to relax you...
well wishes and keep on pushing for a dx...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 5/31/2011 9:27 AM (GMT -6)   
Hi Suesueky!!!! I missed you too! I had so much going on for a bit (with feeling so GREAT) that I was trying hard to get caught up with my classes and all--but did not mean to stay away this long either!

I had to make up an "incomplete" for school as well as keep up with my new class in the doctorate program (and it is so many articles of reading and soooo many papers to write!!!!) And my husband is in school too taking psychology and worldviews this semester so we usually read our chapters together so we can both learn about all of it (it is so fascinating!)

And then a new swim pool with a small children's water-park like area opened up Saturday this week in our area--and yes, I have been there every day since (even if just for an hour or two) with my one year old son who just LOVES it and is already showing signs that he will be swimming on his own by the end of summer--no fear of the water at all!

And it is these things that make me almost angry now because I feel like I should be able to enjoy this quality of life everyday--no pain, no weakness, no problems like that... not just when the doctors pick and choose to help me!!!

I am going to try a new doctor who specializes not just in rheumatology, but in Lupus in particular. I heard he is really good but I am having trouble getting the referal I need and also have to call to talk to them whether they will take my insurance or not.

The hard part is not having a diagnosis. I could deal with this better if I knew what in the world was wrong with me!!!! Most people know they have diabetes, or hypertension, or broke their hand, or something--where I don't know why I am feeling this bad without steroids and why they help me or what the diagnosis is?!?!

It is so awesome to see you again suesueky!!!

Nicole

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 5/31/2011 9:32 AM (GMT -6)   
Thank you Chartreux for the suggestion. I did actually see an endocrinologist because I have had a pituitary tumor for years now and that was their obvious first concern with my symptoms but she checked my TSH, LH, FSH, GH, and prolactin levels and they were all fine....

In fact, she wants me off the steroids: pronto.... and said she would rather see them bush me up with a bunch of pain meds than be on the steroids... that scares me too...

Pain meds help (minimally) for the few hours but you need more and more and they only help the pain, not the weakness. The tramadol I am on is giving me longer relief through the day and the neurontin really helping a lot especially at night. Then the prednisone is what is giving me the real relief from just about everything!!!

thanks again,
Nicki

Blondie37
Regular Member


Date Joined Apr 2011
Total Posts : 78
   Posted 5/31/2011 9:46 AM (GMT -6)   

Hi Niki,

I too, sympathize and empathize with you.  I agree with someone's post that says to bring someone with you, such as your husband....someone who can be an advocate so that you can be more aggressive and TELL THEM what you need! 

If the prednizone is helping you, TELL THEM you need it.  I'm not against doctor shopping and maybe it would be worth it to you to dr shop a little.  I've been to 2 in the last 3 months, the 1st one refused to treat me for my "chronic pain."  The 2nd one was HAPPY to treat me and give me whatever I need, however, he doesn't support my "quality of life" which is what you're trying to hold onto.

You need to tell them that in order for you to maintain your life, schooling, mothering, housekeeping, etc. you need the prednizone until we can figure something else out...

I just feel bad and feel like your getting the "run around" by your doctors cuz they don't know, but you do, you know your body better than anyone.

Believe that, I'll be praying for you.

Blondie


NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 5/31/2011 4:15 PM (GMT -6)   
Thank you Blondie! I just got back from my interstitial cystitis doctor and she gave me a note for school! I was so grateful! She said that usually IC goes hand in hand with autoimmune disorders and it would really explain a lot to her that that is what is going on too. She really made me feel validated. I am hoping my new family doctor does the same thing for me!

I really appreciate all the support from everyone! I am hurting pretty bad right now from the "Big" day out I had so I have to go rest--but thank you everyone!!! Nicki

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/31/2011 6:48 PM (GMT -6)   
While I get that prednisone is helping with the inflammation right now, it is not a good medication to be on for long. It can have disastrous effects and cause something called osteonecrosis in the bones in your body, leading, if you are lucky to having hip/knee/shoulder replacements and fusions of those if you aren't.
While you aren't on a super high dose of prednisone, even at the dose you are at, it can cause big problems for your body, if you are on it for an extended period of time.
There are other medications that they can try you on for inflammation while they get the cause of your condition squared away. It may also be that the prednisone is the reason that nothing is showing up in your bloodwork. It may be helping whatever is causing the inflammation to hide in the bloodwork.
Just make sure that when you do stop it, that you taper off it. Do NOT ever just stop taking prednisone because it can cause an adrenal crisis in your body. You don't want that on top of the other problems you are having.
Have they done current blood work to re check for inflammation? I would ask about it once you are off the prednisone for a week or so.
As far as why it can take so long for the MRI is that most insurances require a preauthorization, and those can take anywhere from a few days to weeks. My insurance has taken up to three weeks to get the preauthorization done.
Hang in there and try to  have a little patience. I know that it is hard but most doctors look for the most common causes and then rule those out, because they happen to occur the most frequently before moving on to other , more rare conditions.
I hope that you get the answers you seek soon.
Sandi

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 5/31/2011 7:41 PM (GMT -6)   
Thank you Sandi! I was very grateful for my doctor today to give me at least a "differential diagnosis" of lymphoma versus autoimmune disorder. It at least gives a name to one of the two possibilities they feel that it is: a NAME finally!!! At least now I have something concrete in hand. I know it may sound stupid, but when you are this sick, it is such a relief to know WHAT you have wrong with you instead of just that no one can tell you! So that was really good today in my mind to have that in writing for me to use for my school note and/or work note.

I really appreciate all of you so much!!!! Nicki

Trudy2
Regular Member


Date Joined Dec 2010
Total Posts : 213
   Posted 6/1/2011 6:40 AM (GMT -6)   
I am not sure how long you have been on the steroids, but I do know that at one time I was on them for about 8 months. Without any problems with my bones that i know of.

It is possible that you can be on them longer, if they help you, push for them!

Trudy
DX pyoderma gangrenosum, Acute Myelogenous Leukemia, Bone Marrow Transplant, Chronic Pain syndrome, Chronic Kidney Disease Stage 3, Major Depressive Disorder, Radiculopathy, Bilateral Hip Pain, Insomnia,Left Groin Hernia, Bulging Disk in Lumbar Spine, Tear in Lumbar Spine, Tendonitis and Bursitis in both hips.

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 6/1/2011 8:50 AM (GMT -6)   
Thank you Trudy! I see my family doctor on Friday and will ask her what I need to do at this point. If I am not satisfied, then I will ask the specialist I saw yesterday what to do. She seemed to be very understanding and believed me plenty.

She actually seemed almost relieved that she also had a real explanation of what was causing all my symptoms! She said it would explain all of it! (Lupus). That made me feel a lot better as most of the other doctors have said it was possible but didn't seem real clear on it...

I appreciate you!

Nicki

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 6/1/2011 8:53 AM (GMT -6)   
Screaming Eagle... are you out there? I was wondering if you might have any advice for me at this point? My RF is elevated pretty significantly, my lymphnodes are very swollen, and the two things helping me the most are steroids and neurontin (helping a LOT)... but all my doctors (endocrinologist included) want to see me off the steroids which puts me right back in bed in severe pain and very weak....

Do you have any suggestions? You have always been such a help and comfort!!

Nicki

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16411
   Posted 6/1/2011 8:58 AM (GMT -6)   
Hi NikiS, it is really frustrating when trying to deal with the unknown of everything hitting at one time. But, like the others have said you have to push forward to get the answers you need. Sometimes advocating for our own care is a reality in life. Many of us have had to do exactly that. One thing I want to point out to you is if you have several things going on at one time, the drs are going to only work on one problem at a time to rule out different things. It does feel like they are not getting it at times I know, but that is how most drs deal with a patient that has multiple complaints.

As far as Lupus or any of the auto-immune disorders drs will not dx that sort of a condition unless they are absolutely sure that is the problem. Because one test may be positive and the others are negative does not mean you have the disease either. I have four auto-immune diseases and believe me none of them were diagnosed quickly or easily, crohns disease, ulcerative colitis, lupus, 2 different types of psoriasis and possibly psoratic psoriasis. It took years for the dx of these problems and it was not because I had bad drs either. There are ramifications with insurance companies when a dr dx's some of the auto-immune diseases this is why they wanted to be absolutely certain of the dx. My drs wanted to be sure before labeling me with something that I many not even have because of how insurance companies can react.

As far as steroids are concerned, they are a medication not for long term use because of their potential side effects later on down the road. Most drs use them on a limited basis too. As a rule they do make us feel like super woman while taking them. I know when I was on them I got everything done and always had all of this false energy. I was on them for 3 1/2 yrs by a dr that had no clue about being on them long term. Now because of the heavy use I have osteoporosis of the lumbar spine as a result of them. So, no they are not good long term. I ended up in the hospital for over a week because of high blood pressure and I was at stroke line level when admitted. So, again, I will tell you short term for a few weeks is fine but not long term like even the time frame you have been on them. In fact considering the amount of time you have been on them, you probably should not have anymore for at least a year. I have had them this year and cannot have anymore for a year.

If the drs were positive you have Lupus they would have put you on Placquenel, that is one of the meds for Lupus, I have been on it for over two years now.

As hard as it can be try to be as patient as possible to find out what is wrong with you. You sure don't want drs rushing in and giving incorrect dx's thats for sure. Hang in there.
Moderator Chronic Pain Forum

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 6/1/2011 11:16 AM (GMT -6)   
Thank you Straydog!!!
I am so concerned about the steroids too, which is why I wish I could get a doctor to try the plaquenil or something else to see if it would help in the same way where I can get off of them. I don't even feel very strong on them, but am able to get out of bed at least.

That is the scary part. As soon as they start wearing off at the end of the 12 hours I take them every time, I am already getting in so much pain and so weak I have to lay down! I am so worried about coming off them because I will end up back in bed like before in severe pain and so weak.

Last time off them I could not even get out of bed to go to the restroom and after almost a week of that my husband finally had to call an ambulance to take me to the hospital and they gave me a steroid shot and I was up the next day!

It is pretty scary to know what to do. I don't want to be on them because of all the things I hear about what they do to you, but without them I cannot live at all...

Thanks so much for all your care and support!
Nicki
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