Just wondering ....
If your rheumy told you that your physical exam was "normal," what question would you ask him or her considering that I have pain, fatique, dryness, numbness and muscle weakness and I'm being treated with plaquinil, methotrexate, Ivig and Rituxin. What part of this is normal??!
Hi Chris,
Is the rheumy who said your exam was normal the same doctor who is treating you with those medications? If so, wondering if he meant "normal" for your condition. That IS confusing. Wish I had some insight.
LucyD
Thanks Lucy!
Yes , he is treating me for sjogrens and neuro is treating with Ivig. I will be emailing him with questions but I just wanted a little insight from the very smart peeps on this forum!????
I am guessing that he meant your heart sounds normal, your lungs/breath sounds are normal, ..... not sure what all he checked. Since you have numbness, he must not have checked for numbness or that would be abnormal.
I also am not sure how all of the rest of your physical exam could be normal. Your mouth had to be dryer than normal (if he looked in it). Does your skin look normal or is it dry and flaking? Any rashes or discolorations? Does he check your hands for inflammation in the joints and for the redness at the base of the fingernails? My Rheumatologist always checks all of those things. I don't know where your pain is, but my Rheumatologist does check my joints since I have pain in them, especially the hips.
I guess you should ask him how your physical exam could be normal when you have all of these problems.
Yes, something does not sound right. You are on an awful lot of meds for someone who is "normal". Frankly I am also surprised you are on methotrexate and rituxin at the same time. Many docs do not use several immune suppressants at the same time. I hope your WBCs are monitored regularly.
The major functions of your body: Heart, lungs, bladder, gastric system, brain and so on are probably healthy, Chris.
Normal is probably not the right term to use. And clarification of what was being examined would help.
For me, normal usually means that my blood work is normal.
That is, the tests that were run turned up normal.
This is all about the fact that doctors use the tests they have, not the tests they need! Or YOU need.
Oh, well.
Another day in the life.......
We carry on.
Hugs, Elaine
Thank you for your input.
I am feeling defeated today. Long term disability through my previous employer was denied . They are saying sjogrens is pre existing . I don't think I have the energy to fight anymore.
Dearest Chris, rest for a while. Float a bit........find a warm water pool if you can, and REALLY float. It's good for your soul I do believe.
The struggle is on going, but there is a way to move forward without struggling so hard.
I find the meditation and relaxation help me find that way. To wait until I am ready to move, and then swim over the waves instead of jamming my way through them.
If this makes NO SENSE, ignore it, please.
On a practical level try some mild exercise, very mild, just to get your heart rate raised and your blood moving. I use the Nu Step at my fitness center, and gentle water movement. NO ONE SHOUTING at me to 'feel the burn' for sure!
Be good to yourself. Make a list of things that are going well, that give you pleasure and a sense of accomplishment.
Sometimes we are looking so hard in the corner marked "Sjogren's" that we forget about the rest of the room marked 'life'.
Hugs, Elaine
Thank you Elaine! Great advice????
Chris,
If you feel the LTD denial can be fought, please consider a lawyer. It is too much to deal with all the health issues and deal with the stress these insurance companies put you through. They are hoping you give up - I've been through the process. Let someone else fight. A lawyer will help with some of your load and they get paid only if you win and it's out of back pay and a limited amount, so up front you just need them to accept your case.
Be well!
Suslew
Chris I am sorry you're not feeling well despite the medication. Just wondering if your doctor is considering your symptoms as part of your "new normal." Is this his way of saying that your symptoms remained unchanged? Sounds to me that something isn't working for you or that there is a possibility that something else is going on. I hate when a doctor tells me everything is fine but I feel awful.
I know that if it was me I would want clarification of what he considers normal.
It stinks that on top of all this you have to deal with being denied long-term disability. I have heard that many people have more success using an attorney to get their disability approved. Best of luck.
Chris - so sorry to hear you are not feeling well despite the medications...time for a change in medications maybe? A look at some new treatment options?
For me, personally, my rheumy sees me every six months unless I get "sick" or have a really bad flare prior. I try to see my PCP for most of my issues unless I truly know I am "in a flare".
I think normal is a term used loosely and can mean so many different things to so many different people. Normal may mean - normal for you - normal bloodwork for you, normal symptoms, nothing new...but normal can also mean everything is fine. If everything is not fine, then find the time and means to report this to your dr - make sure he/she knows that you are not feeling good at all and seem to have more "bad" days than good and it is time to re-evaluate your situation and your treatment options.
Sending positive thoughts your way.
Keep us posted.
Hugs
Kim
Chris, I am so sorry you are feeling bad physically and pretty beaten by the $#&*#@ insurance company/previous employer. I agree with Suslew - if you can, get a lawyer, and let them fight this. The illness with its pain and fatigue causes wears us out so much it is hard to have the energy to fight the insurance companies on top of it.
LOVE Elaine's advice. I hope you will be able to use it. I am going to try to follow it myself.
Elaine, just reading what you wrote felt comforting and healing and peaceful.
(Am fighting very underhanded people at work with much anxiety and stress, which just delivers a double whammy with the physical illness.)
Hugs to you Chris.
LucyD
Thank you all for your kind words!
Don't get me wrong...I feel MUCH better that I did a year ago. The meds are helping. I am just so confused that my doc said my exam was normal??
I emailed him and he didn't really clarify to my satisfaction. He said that he believes my symptoms but it cannot be proved to the insurance company...
Hi Chris,
I just had to write back and say that what your doctor said has me upset. Disability is a most likely a completely different situation that requires more proof than intermittent FMLA, which has been approved for me for the time being, but my rheumatologist simply completed the form, sent it to the insurance company, and it was approved.
I sure hope you can get it approved. Maybe your doctor knows that he needs the substantiation and tests to prove it. That is upsetting since often Sjogren's does not show up on blood tests.
Good luck.
Hugs
LucyD
Thanks Lucy. Sometimes all one needs is to feel validated!
Hugs
I would say that he meant "you are normal for the shape your are in" but I would ask him for sure. Me thinks that if he found anything else that he thought should be scoped, scanned or tested he would have done it. The fact that he is familiar with your condition and your meds means that he knows "normal"is sort of an ambiguous term. Irish