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I am new to the site, as one can tell by my responding to a post first and introducing myself second.
I'm Pamela.
My burning need to know is this: Has anyone experienced most of their symptoms on one side of their body?
Let me clarify. I probably have had Lupus for an extremely long time, made even pre-adolescence, whatever.. nothing new to anyone here. Tell someone this hurts this time, and something else hurts next time, but not enough to stop your daily living... just enough to make you feel crappy and slow you down: and it falls on deaf ears.
Anyway, appearantly I had what is referred to as a 'flare-up'. I was actually tested correctly and not just give a pill and sent on my way. I came up with an ANA of 1:2560 and a sed rate that was defined as 'moderately high'. This coupled with an on-slaught of bizarre and uncomfortable symptoms I was sent to the Rheumie.
She said, rather matter-of-factly & calmly, 'You have Lupus. I'll send you for more blood work but regardless of the tests its obvious you have Lupus and even if the blood work doesn't show it right now, we are keeping an eye you.' WHAT?!?
Ok, a month later... still in crazy discomfort but with my eyes starting to open to the issue at hand and unable to get back to the Rheumie for another month (she is popular!)... it starts to dawn on me that all the symptoms (that were alleviated by the Prednisone and slowly, although muted, returned as I came off it to the hydroxychloroquine, 400mg daily) are on my LEFT side!
My swollen glands; left side.
My ulna (bone in my arm) slipping out of its joint; left side.
Tibialis Anterior (shin muscle) cramping; left side.
Finger lock-up (thank god that was only for 24hrs); left side.
There are other aches and pains but, you guessed it, mostly left side.
I mean choking on every little pill because you are having difficulty swollowing isn't really 'left-sided' or the ridiculous amount of gas I suddenly have isn't either. Or suddenly losing everything, forgetting appointments, unable to focus.. that's left brain.. or is it? Well the majority of my 'pockets' for my diverticulitis are... LEFT SIDEd!
Anyone hear or experience this???????
 

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Hi Pamela, and welcome to the board. I hope that you will find support here. If anyone has heard of your situation, I am sure that one of the moderators will have.

Did your rheumatologist refer you to a neurologist or send you for an MRI/MRA of your brain? This sounds to me like maybe a mini stroke/tia sort. Not all of it could be tia, but it makes me wonder what is going on.

The length of time in discovering the problem is not unheard of. Like you, I have dealt with health problems since I was about 5. Hopefully, with the info we are adding to daily, future generations won't go through years of misdiagnosis through which we have lived.
Sally
 

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Welcome to the site!

My first thought was... are you left handed? My first pain "syndrome" that started with me prior to diagnosis actually was right sided and I thought it was carpal tunnel but it turned out to be cubital tunnel (from the elbow as I imagine you know all about reading about your elbow problem!). Since I used my right hand so much more that arm was the first affected.

Most typically... lupus pain is symmetric but certainly people will flare up worse on one side or the other from time to time but I can't say I've heard of anyone before you with quite that sort of list of left sided problems! It will be interesting to see if anyone else has heard of something similar...

I second the neurology suggestion, and would specifically mention to either your GP or rheumy the difficulty swallowing especially if this is new to you. I have great difficulty swallowing pills too but that's just always been me...
 

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Hello Pamela, and Welcome. You are going through a hard time but in essence the Consultant made sense when he said that he would treat you irrespective of blood work. This is quite an enlightened attitude as blood tests are not always helpful. Mine were negative for many years. Many people are denied a diagnosis or treatment when this is the case.


My symptoms are all much worse on the Right side of my body.
Hope this helps, keep posting and maybe try the Chat Room.
x Lola
 

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Discussion Starter #5
Well how wonderful to hear some other thoughts and so quickly! Thank you all.
TIA.. you know, jokingly, I made a comment after a migrane (in December, just before this 'flare-up'), one that caused me to slur my words during it, that it might have been a stroke... but viewing myself, at the time, as a healthy, athletic 39 year old woman it really seemed impossible but after hearing it as apossible suggestion... maybe I should give it real conderation.
Cubital Tunnel Syndrome- yeah, when I gave my GP my laundry list of issues in January he sent me to a Neuro (who was an a$$) to be checked for Carpal TS. Of course the neuro says 'Oooo its severe, lets do surgery.' I told him lets wait to see what the Rheumatologist says. Amazing, with the Prednisone... no symptoms, no tingling or pain to wake me up in the night. Off the Prednisone, as I struggle with inflammation the tingling/pain comes & goes. As for the the ulna situation, it actually becomes dislocated & I have to have assistance & traction it back into place.
Lastly, I am Right-handed which has added to the mystery of left-sided symptoms.
Thank you all, again, for responding to my post. The response makes me realize I am not alone which gives me courage to face this and do what I can do to be as healthy as I can. :)
 

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Hi Pamela,

Whilst I have pain on both sides of my body it predominately favours my right side - my lupus pain that is - and I'm left handed ;) However I do have carpal tunnel as well and it's worse on my left wrist/hand because that's my dominant side for writing and most everything else I do.

Just thought I'd throw something different into the mix. We are what we are and the symptoms we have can be quite individual.

love
Lily
 

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Oh nearly forgot, have you been checked for sticky blood (antiphospholipid syndrome) ? It's common to have migraine in that but it's also possible to have strokes etc. Just ask your Rheumy next time you see her Pamela, it definitely should be checked if it hasn't already.

love
Lily
 

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Hi Pamela,
I understand a neuro doc being a jerk, but to head for surgery right away??? NOT! I well understand frustration in dealing with doctors. I've fired more than a few of them along the way. We do not need to add to our stress by dealing with a doctor playing with the "God" complex.

The reason I was questioning a possible tia or such accident, is the one sided symptoms. The brain divides its control of the body by each half of it handling one side. That your left side is affected would refer to the right side of the brain. To investigate this fully, scans, including mri/mra (with contrast) would be indicated.

Because of the reaction of the neuro doc, I would hazard that he does not know much about cns and sle. Fortunately, there are neurologists who know what they are doing with sle. I would interview the doctor and ask specifcally what they know about sle and cns. That response would decide my next step.

Hang in there, while this is a pain to get resolved you can do it. If you need the name of a doctor in your area, scroll down and there is a section where you can post and ask for the name of a doctor in your area.
Good luck,
Sally
 

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hi Pam
me 2 left sided aches and inflamation more on my left side weird or what. Im right handed by the way. you sound like me your symptoms it will get better just getting the cockail of meds sorted. take care, air hug
dixy
 

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My right side

Hi,
An interesting observation and one that hindered my road to diagnosis as I didn't tick the right boxes. My symptoms predominate my right side (I am left handed). Before being dx last year I lost my hearing in my right ear and my right eye swelled to the size of a golfball in the sunshine. Most of my pain (except the chest pains) are mainly on my right. I do experience symptoms though on my left but nowhere near as bad.

:(
 

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Hello and welcome :)

The others have given you excellent advice and I'd also second getting a neuro opinion and also testing for APS.

I have pain all over, in most of my joints, but it started on the right side and is worse on that side.

You definitely need to mention difficulty swallowing and also that "migraine" attack you had and how bad it was.

The gas you're experiencing could be from plaquenil. It is a well known side-effect which usually wears off to a great degree after a while. Plaquenil does take a long time to take effect but it is a very good baseline med which has few or no side-effects (except gas :lol:). It is "disease modifying" and will help control the frequency and severity of any flares you may have once it kicks in fully.

bye for now,
Katharine
 

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Pamela,
Hi and welcome to the site. You are echoing most of us. I do have a question though are you left handed? I am not sure that is the problem lol. I have a lot of problems on my right side not to say that I don't have problems with the left side just that most are on the right side of my body. The what I like to call the roaming pain does not surprise me nor does the falling on deaf ears. That is one of the rest I do love this site so much when you say does anyone else have this you get 15 people that have it and know what you are talking about for the first time. It is like a breath of fresh air. You will put together more and more of things even you passed off as something else as you talk to others on the site. I know that is how it worked with me. The brain fog as we call it is bad for most of us. You will find that also seems to be a common thread we all share, we all are loosing our minds lol, ok well maybe not that bad but we can relate. I hope you are feeling well and doing well also.
 
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