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Hi Everyone, wasn't sure where to post this, hope I picked the right category.
The frustration continues.
I had one pred pulse (didn’t have the cyclophosphamide yet), but still have bad pain right side of neck, rt chest, rt arm, terrible burning, etc. Saw Neuro, but he hadn't received the Rheumy's referral, she still hadn't prepared it by the day of my app't, and I had to be the one to suggest they get the office to fax the report she'd sent to my GP. Then he didn't agree with some of her assessment, although I don't think he took into account improvements that might have occurred due to having the pulse therapy a week prior. He was so focused on whether or not my reflexes were depressed, and didn't take time to assess my pain, (that I have always felt might be something in and of itself, separately needing to be assessed). He did note some left-sided weakness and referred for MRI, but this is 6-8 wk wait. He just said he had no explanation for my pain and if the MRI doesn’t find anything, then he thinks my doctor should check my heart............I can't believe that.......wait until after the MRI to check my heart? and I was at a loss, felt defeated and didn't have energy to pursue or argue. So once again, my concerns were not addressed.

I spoke to my Rheumy via phone after that (she is in city 3 hours drive) to find out the next step, as my GP doesn't take any initiative and hasn't even read the report she sent to him on Jan 10, the day I saw her. She told me in a snarky tone "you can't push the doctors", and that I just had to wait. I couldn't believe this. I have gone from being a hard working productive, contributing member of society, to being unable to work, and this health system is content to let me sit there, sick, waiting for months as they take their time, doing one test at a time. It seems like my Rheumy has decided the right-sided pain was due to CNS effects of Lupus, and so there is no thinking into whether there could be another cause, and in the meantime nothing gets resolved.

So I saw my GP again, and asked him, “are you sure this right-sided pain couldn’t be from an injury ?” “Yes, it could be a brachial plexus injury”, he said in such a matter-of-fact tone, I was stunned. So why wasn’t this being investigated further, I don’t get it. So finally, he said he would refer me for nerve conduction studies, but when I checked a few days later, his staff nurse said he hadn’t even made a note to do the referrals. Can’t push the doctors??? If you don’t, nothing gets done!

Sometimes I could just cry, I feel so much like I’m hung out to dry and facing so many obstacles. I have no help, and I sometimes just don’t have the strength to push things anymore. My family doesn’t seem to think my situation warrants coming out to help me, and my friends, although helpful, have full time jobs and their own lives to lead/problems to handle. Last week my dog (13 ½ year old Golden Retriever, “Teak”) had a sudden serious illness (vascular event) and for a couple of days, it seemed likely she would die, so I was dealing with that as well. Fortunately (I am so thankful, I cannot even say) she has recovered remarkably well, however she now needs substantially more care.

In the meantime, while all of this was going on, there was an interesting development. A couple weeks ago, I received a phone call from a Doc who took over patients from a former GP of mine who moved to another province. His office informed me that they had just received a result from a thyroid ultrasound I’d had some time ago and that he wanted to discuss it with me. I had since found a GP closer to where I was living and working and that GP had told me the results were insignificant and the subject had been dropped. Not wanting to involve yet another doctor, I initially declined an appointment, but last week decided to go. I saw him last Wed, and he told me that the nodules on my thyroid warranted investigation and that I should have had a thyroid scan. He asked a lot of questions about family history, etc, and the discussion naturally led to the pain I was having and some of the investigations that had been done. He took a copy of the last report from my Rheumy, and sent me right away for a chest xray and thyroid blood tests. He said he wanted another opinion on this right-sided neck/arm pain and he was going to refer me to a general surgeon, as well as referring me for the thyroid scan.

And so, I am hopeful (but scared to hope) that this other doctor will be the one to take interest, think outside of the box, and search to find the cause of this pain. I am not certain what he is thinking, but my educated guess is that he thinks my thyroid is a possible cause of the pain. I am happy to let him set up any investigations he feels are needed, I really need someone who will take charge and sort this out. I’m not ready to drop my current GP, but I will follow up with the new guy and see what he has to offer. I need his help.

Well, I have gone on enough and my body is suffering the consequences of sitting this long in front of the PC. I just really needed to rant, as I have no one who will listen and provide me with any emotional support.

If you can all just keep your fingers crossed for me that this new GP will come through for me and I will get some answers. In some senses, at least I now have confirmation that I do have Lupus, but there are still unanswered questions and I don’t feel certain yet that the Lupus is the cause of this additional pain (I have never had this with previous flares). I need this figured out, so I can get proper treatment.



Jennifer
 

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Hi Jennifer,

We are sometimes reluctant to change GP but it can sometimes be a very good thing to have a fresh face and someone who will look at the whole without always thinking about past things and soemtimes making up their minds before you have finished expalining what's wrong.

I would keep an open mind and see what he can do for you :) He sounds motivated and careful (especially as he contacted you like that from those results).

Katharine
 

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Discussion Starter #3
Hi Katharine
Yes, I agree with you. I had initially declined an appointment, thinking that I shouldn’t be running from doctor to doctor (I had to switch just before Christmas, after a few months of getting nowhere with one) all the time, and thought I needed to have one that really got to know me. However, the one I see currently, although better than the last, never remembers a thing (even when my Rheumy called him about her urgent concerns) and his office is horribly disorganized. He is pleasant enough and listens to what I have to say, but he takes no initiative to direct investigations. It was the one before him who had seen my thyroid results, and told me it was nothing significant. After thinking about it for awhile, I thought it would not be smart to ignore this, since there was a doctor out there who thought there was something concerning enough to have his secretary call me for an appointment.
I was quite impressed with that new doctor. He was not the warm/friendly type, but was not at all rude. I would say that he was cordial and down to business, which is completely fine with me. He seemed focused on figuring out a problem.
I have since done some research, and I can certainly see why he is concerned. There are a number of explanations for my condition, which involve the thyroid, and he is right to be investigating this avenue. It may not lead to my answer, even though it looks promising, but at least that will be another area checked out.
 

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Hi Goldengirl,

I think a second opinion is definitely warranted. When I had an overactive thyroid I had neck pain and looked like I had the mumps on the one side. It did not hurt down the arm though.

Good luck with the MRI. I know it is frustrating to wait so long. Hopefully it will give you the answers you need.

Take care,
Lazylegs
 

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Discussion Starter #5
Lazylegs
Thank you for your note, the empathy helps, I find that my family is just not supportive and so I sure need to be able to come here.
I've done a bit of research since seeing that doctor and I can sure see why he is doing these investigations, including painful hashimoto's (usually does not cause painful goiter, but sometimes, and my symptoms fit.....also mother has hashi's), thyroid malignancy or substernal thyroid. Other docs have told me that the thyroid couldn't cause irritation of the brachial plexus (which is what I've been told could be causing the pain in right chest and down arm, and they actually suggested entrapped nerve at one point, then seem to have forgotten about that again), but I have found this is not true either.
I find that many doctors just don't think there is anything serious wrong and so they placate and tell you not to worry, giving pat answers and false reassurances, and as a result they do not do proper investigations.
Anyway, we all know that story so it doesn't help to keep harping on it, it is frustrating but doesn't solve things.
For me, I just need to know what is going on, I'm not particularly worried about these possibilities, and am prepared to face whatever the diagnosis might be, but I just want to know so I can get proper treatment. All of the above would warrant surgery, and I'm ok with that, not scared, and actually somewhat hopeful because prognosis would be quite good. I am already sick and not afraid of that, but I am afraid of going on and on like this with no proper treatment or diagnosis. It is a lonely place to be.
Today isn't a great day, I had been feeling a bit better with less pain, but now I'm getting more of the weakness in my left arm, feeling sort of groggy and have a fever. It's so frustrating because only my symptoms are being treated, not the cause.
Well, better go......thanks again.
 

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I had recently posted a thread about pain i was having in my throat( you can search for it under "my lupus has progressed") and the right side of my neck. I didn't have any burning though. This occured while having a flare up that was effecting my heart and lungs(inflammation). I never really got the answers I needed, even after going to the emergency room. I was told that it was swollen lymph node but I was also having this choking sensation in the front of my throat when I would bend down, breath deeply, or move the wrong way. So during this new symptom I was experiencing, I took it upon myself to do research online and found some interesting stuff that had to do with the thyroid that made me think that my pain my have been linked to it and or my trechea. But it all came down to the Lupus being a trigger or other autoimmune diseases. My pain has since disappeared and I hope and pray I will never go through it again!!!! But when and if I do, I will definitely have my thyroid checked so you and this other doctor may be heading in the right direction. Good luck to you and many many many hugs because everyone at this site understands the frustration!

Darlene
 

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Discussion Starter #7
Thanks for your understanding......this seems to be one place where people don't just say "don't worry about it", and understand the frustrations.
Now I await further tests, I am not a patient patient....I want to get well so I can get my life back, or at least know what I'm dealing with. It is so hard to wait, I try to invite friends to visit, since going out isn't easy for me (getting to app'ts is all I can handle usually), and that helps fill some time, but most people have their own lives to live.
I hope this new doc is on the right track to solving at least part of my problem. I never really aspired to having surgery, but if removing my thyroid would get rid of this awful pain, I'd be ok with that.
Thanks again, I will keep you posted, I don't think I'll know anything for quite some time now :( I learned today that it will be 2 months before I even get told my MRI appointment date, and longer yet til the app't. Maybe that will be wrong and the neuro will get me in sooner. I hope.
 
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