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Discussion Starter · #1 ·
I know from reading others' accounts here that the quest for answers and a diagnosis can be a long and frustrating ordeal. I'm pretty sure that I'm going down the same confusing path.

At the end of May, I went to see my GP because I was experiencing
- debilitating migrating joint pain
- headache
- stiff, painful neck
- swollen glands in the neck
- fatigue

I thought I must have Lyme disease, but my blood work came back showing absolutely nothing for Lyme or any of the other tick borne illnesses. Two sets of bloodwork however did show
- positive ANA (no titre was performed)
- high Anti-DNA
- high sed rate
- high c-reactive protein

Based on these results along with my symptoms, she told me that she suspected Lupus or possibly RA and wanted me to see a rheumatologist. I was given prescriptions for pain medication and told to try to push through the pain and fatigue when I can.

The acute pain and swollen glands subsided after about a week and a half, but I continue to be plagued by some symptoms that will come and go. Some days I'll feel ok and then get knocked on my butt by a wave of fatigue - not a sleepy drowsy feeling, but like someone just sucked my soul out. I have to lie down as even sitting is too hard. The fatigue can last a full day or only hours. I've been plagued with similar periods of fatigue for a couple of years now.

I continue to have some joint aches. It's not the severe pain that I had in May, but nagging discomfort in my ankles and shoulders that can make walking or lifting things difficult at times.

My ankles now occasionally swell up to the point that you can't see the bone and I can't fit into my shoes. This of course makes the joint even more painful.

I finally saw a rheumatologist yesterday. I presented my symptoms and he reviewed the bloodwork my GP sent over. He said that he doesn't like the lab company that performed my bloodwork and so he doesn't necessarily believe any of the results!!

And while he agreed that I am predisposed to auto-immune disease because my father has RA and my grandmother has Lupus, he is skeptical that I have either because I am not symptomatic enough (his main basis for this is that I don't have the Malar rash and no major organ damage) and he doesn't trust the bloodwork.

I was sent to a new lab to have the auto-immune panel performed a third time. I am concerned that since my symptoms are present, but not as severe as they were in May, that the results won't show anything. It's not that I want something to be really wrong, but I'm scared of being told there is nothing to be done and that I'll be sent home with no help for the chronic aches, swelling, and fatigue and left to wait in fear of another severe episode. I have a little under two weeks to wait for my next appointment at which time hopefully my bloodwork will be back. I'm trying not to worry too much as that won't get me anywhere, but I can't help but hope that the results will be clearly indicative of something so I can get answers and assistance.
 

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Hi Kit, welcome to the site. It is a great place to get info and support. I can understand your dilemma. I wonder why he doesn't trust that lab, it is strange you would be sent to that lab for bloods if it were unreliable? I hope the two weeks till your next appt pass quickly. I would use the time to prepare for your next appt. Was there anything you forgot to mention? Take photos of any joint swelling and document your symptoms it can help. Think of questions to ask him, that you would like answered. Did he mention a treatment plan at all? Explain to him how debilitating the fatigue is and all the things it stops you doing. I wish you well for your next appt. Let us know how you get on.

Deb
 

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Hi Kit & welcome,
I to have been told that cos i did'nt have the butterfly rash & no major organ involvement that i don't have it.
It's just so frustrating knowing that there is something wrong, even though some of my tests ANA & ENA came back positive, then to be told that there was nothing wrong & that my symptoms are seen in alcholics.
Just write down all your symptoms even minor ones & take pics, i've realised we have to have this info when we go & see the DR's cos they don't seem to believe us.
A daily diary for pain & symptoms is good as well.
Let us know how you get on.
Sand....
 

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Hi Kit.. hope you get some answers soon.. I just wanted to say don't try and push through the fatigue and pain, your body is telling you something and you should listen to it.... you will get a bigger payback day if you don't :( Only somebody without lupus would give such ridiculous advice!! Your body is trying to cope with so much.. it needs rest in order to function as best it can, of course proper diagnosis and meds will help that process loads.. until then be assertive in what you need for yourself to be the best you can and trust in listening to your body.
Claire XX
 

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Hi Kit and :welcome:

I just wanted to add here. If that rheumy does "send you packing" get straight back to your GP and ask to see someone else. I would want to make sure you see an "auto-immune specialist" and not whoever was available at the earliest opportunity. You may need to wait a few months to see a top specialist but it would be worth doing just to be sure that you have correct care.

I get worried when people have
- positive ANA (no titre was performed)
- high Anti-DNA
- high sed rate
- high c-reactive protein
and yet the rheumy "ignores" that info.

I agree too on the pushing through fatigue. I'm sure the advice was well intentioned but many GPs have very vague notions of lupus and "pushing through fatigue" is just about the worst thing you can do. It will only prolong that fatigue at best and, at worst make things spiral.

Bye for now,
Katharine
 

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Hi Kit,

I hope his latest testing shows up similar results which will make him sit up and take notice :mad: Either way he should continue monitoring you and try to do something for your pain, if he doesn't then I too would be seeking out a Lupus specialist. Those results along with your symptoms indicate something is amiss. Did he take a urinalysis sample too? That would be important for thorough evaluation, if he didn't I'd be concerned about his competency.

I loved your description of the fatigue, "like someone has sucked your soul out".............only someone with an autoimmune disease can understand what that truly means. It's not just fatigue how other people may refer to it, it's all consuming leaving you with nothing. To try and push through that usually makes us worse, your body is trying to tell you something.

Let us know how you get along :hug:

love
Lily
 

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Hi Kit and welcome.

You have been given good advice here. Your symptoms along with your blood test results sure sound like Lupus to me yet I am not a doctor.

If this doctor poo poo's you after this next set of blood work, FIRE HIM AND FIND SOMEONE BETTER!!! You need a doctor who is willing to look at the whole picture and not be worried about no malar rash. The rash only appears in 50% of people with Lupus.

I wish you luck moving forward and if you do get a diagnosis of Lupus think about buying The Lupus Book, 4th edition by Dr. Daniel Wallace. The best investment you will ever make. It is written in layman terms so it is very easy to understand.

Rest when you can and listen to your body when it speaks to you. Hope to get to know you better and please feel free to join us in the chat room sometime.:wink2::wink2::wink2:
 

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Hi there! I went through the same thing. My first doc wanted me on anti-depressants because i was crying in his office due to frustration (not knowing the cause of my pain). He told me "it's in your head. We have the ability to make ourselves sick". I could not believe it.
Don't let any doc tell or even make you feel that you are nuts. Go to another doc. I had to see a total of 4 RA's before i found one that finally told me i had lupus. And my blood work showed Lupus too with the other 3 docs! 3 years later I had a name to my pain. There is nothing wrong with finding someone else...someone with good bedside manners. DO NOT SETTLE! No one will take care of you but you! Good Luck!
 

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Discussion Starter · #9 ·
Thank you so much for your advice and support!

The rheumatologist did not do any urinalysis. Perhaps he's waiting to see the results of the blood work he ordered before deciding if there is any indication that he needs to run that? Or perhaps I'm making excuses for him. :)

The blood work he ordered is being performed by a different lab than the one that did the tests last time. My insurance requires that a specific lab company be used for all testing, but he personally does not like/trust them. In order to get around the insurance issue, he sent me to an approved hospital that uses an independent lab. He has ordered an ANA titre rather than just a positive/negative which the previous lab would not perform, so I give him some credit there. But again, since I'm not in an acute state, I'm concerned nothing will show and he's already pretty much dismissed the other sets of blood work that were done in late May / early June when I was at my worst.

If he does send me on my way with no help or answers, I will definitely go back to my GP for further help. I also still have an appointment on the books with a second rheumatologist who couldn't see me until October 20th. I was going to cancel since I was able to get in to see someone else, but now I'm thinking I'll hold onto the slot just in case I need a second opinion.

I am also going to be better about resting when the fatigue starts to hit. You are right that when I try to push through, it pushes back and beats me every time. I have a hard time giving myself permission to rest, but hearing from so many of you that it is important reassures me.

Also based on your recommendations, I have started taking photos and keeping track of symptoms so that I can share them with the doctor on my next visit. I can also use it to look back when I'm having self-doubts.

You all are so wonderful. Thank you again!
 

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Dear Kit,
Blood test results can fluctuate and sadly don't always show anything when you want them too. This does not mean that you are less ill than people with positive bloodwork. Many of us have felt dreadful sometimes and the blood work has been fine.

In my opinion a urine test is good basic screening and should definitely be carried out.

I wish you the strength you need to take this forward. Incidentally malar rash may not be present or may show only as a slight pink that actually makes you look healthy-so unfair!
x Lola
 

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Hi Kit,

He may have run bloods for kidney function, but sometimes that only shows things when they are well advanced. Doing a urinalysis is a good simple inexpensive way to check things before they progress to showing up in bloods. Your GP could run one and I think that's a good idea ;)

I would definitely hang onto that other appt. It might turn out to be a good one if you had to wait a while to get in. Often the good Rheumies have a waiting time of 2 to 3 months. I would be wary of someone I got in so quickly with unless it was from a cancellation.

Anyway this guy might turn out to be ok, but keep other options open :)

love
Lily
 

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Hi Kit, I would definitely hang onto that other appt. A second opinion may well be needed and is useful. The other rheumy may not be so dismissive of the first bloods. Bloods and symptoms do fluctuate and a good rheumy knows this and will look at the whole picture. It sounds as though you are well prepared for your next appt. I wish you well for it. I too found keeping a symptom diary help my self doubt! It is hard when we have all these unusual symptoms and no explanation. Keep going you will get there.

Take care

Deb
 

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Hello kit :)

I too would keep that appointment. Sometimes a first appointment can be a long wait but being able to then choose who you stay with after has distinct advantages.

Katharine
 

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Discussion Starter · #14 ·
I have learned a lot from this forum as well as from the main website. Is it ok to let the doctor know that I'm an educated patient when presenting him with the symptom diary and photos? Is it ok to question why he doesn't trust the blood work and why he didn't do a urinalysis? And to let him know that I am aware that blood work doesn't always correlate with the symptoms but that doesn't mean there isn't a problem?

I don't want him to think I am trying to self-diagnose or become offended and take the attitude of "who's the doctor here". However, I don't want to leave my next appointment with more questions than answers as I did this past time.
 

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Hi Kit,

A good doctor won't worry about you being well informed, we should draw the line at telling them their job though, for some reason they don't like that :lol:

The symptom diary and photos will be very helpful, he should be glad to have them. As far as the urinalysis goes I would ask him if he thinks you should have one...........if he thinks not then he should be explaining why not ;) and you can take it from there. Bloodwork and labs, they each seem to have their favourite, so I wouldn't even go there, see what his testing turns up. And as far as symptoms and blood work not matching up always I would just sit that one out. If you are presenting him with symptoms then he should realise you have a problem and be willing to monitor you and keep testing until he is satisfied (within reason) what the problem is. Also during this time he should be trying to do something about your pain relief etc. even if he isn't willing to call it just yet and medicate with the appropriate meds. If he ignores your symptoms and doesn't offer any relief and thinks you are fine then you know it's time to seek another opinion :wink2:

love
Lily
 

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Discussion Starter · #16 ·
Just wanted to give a little follow up and another big thank you to everyone that gave support. I saw the rheumatologist on Tuesday and was diagnosed with Lupus. The bloodwork he had done using an independent lab came back with the same results as the first two draws (positive ANA, high anti-DNA, etc) and the symptom photo diary was very helpful in providing enough other diagnostic criteria. I'm very relieved to have been diagnosed and started on medications that will hopefully help me to feel better.
 

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WOO HOO,
At least you can put a name to it, & get the treatment you need to feel better.
It's so nice to hear, cos we struggle to find the answers sometimes it takes years.
Now the meds can start to work.
Hugs.
 

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Hi Kit,

What a huge relief for you.:) Getting started on meds will be a big help to you. Remember though that it does take some time for certain meds to kick in.

Love,
Lyn
 

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Hi Kit,

Now you have been diagnosed don't be surprised if you find your emotions suddenly all over the map. That is totally normal. During that trying time I found it best to just take one day at a time.

Newly diagnosed members sometimes feel funny asking so many questions. Please feel free to ask away. It is a great way for all of us to learn.

Take care,
Lazylegs
 
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