frustrated with rheumatologist and neurologist

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New Member

Date Joined Jul 2011
Total Posts : 17
   Posted 8/30/2011 7:27 AM (GMT -6)   
I started seeing a neurologist a couple months ago for tingling and weakness in my limbs, some intermittent numbness. She ruled out MS but ran a bunch of blood work and my ANA turned up high (1:2560 homogonous and speckled) I was sent to the rheumatologist for more specfic testing. He did a bunch of blood tests and urine tests and it all came back negative. Thats all he told me anyway...the ana was still very high but everything else was negative. The rheumatologist barely asked me anything at my appointment. Basically asked if I had any hair loss or skin rashes or if I was achy. I told him I sometimes get a rash on my nose and cheeks (light and comes and goes) and I get a weird patchy rash under one of my eyes ( also comes and goes) I get sores in my mouth and nose. He told me none of those were related to autoimmune as autoimmune rashes don't come and go and always get progessively worse. I do get achy but haven't noticed any joint swelling. I get extreme pain in my back though that is not muscular. I am extremely fatigued all the time no matter if I sleep good or not. The rheumy said he wanted me to keep seeing the neuro for the tingling and weakness as that is not related to whatever is going on autoimmune. So I saw the neuro again and she didn't do much but decided to schedule a EMG for couple months from now if my symptoms persist.
The neuro put me on adderall for the fatigue...first she did 10 mg with instructions to take one to two twice a day. I was taking two around noon everyday as that seemed to be the best for me. She now changed it to a 20 mg tablets and wants me to take them twice a day so 40 mg of adderall. It has helped alot but there are times where I feel nervous and anxious and I feel like it makes me more irritable. I just don't know if I want to take so much.
So basically the rheumy told me he can't make a diagnosis because the tests were negative and I'm not exhibiting any clear cut symptoms but my ANA pattern suggests something in the Lupus "family". The neuro agrees with him and says she can't make a diagnosis because my MRI is normal for my brain and cspine, but wants to do the EMG in a couple months if my symptoms persist. Before this all started I lost a pregnancy and my husband and I have been wanting to try again. The rheumy said to go ahead because the anti-body tests that affect pregnancy came back negative but the neuro wants me to wait until she can do the EMG. I'm just very frustrated and confused.

Forum Moderator

Date Joined May 2005
Total Posts : 7672
   Posted 8/30/2011 9:26 AM (GMT -6)   
Your rheumy seems to be somewhat clueless as to auto-immune diseases. Tingling and neuropathy is a very common accompaniment to auto-immune disorders! As well as other symptoms you have mentioned. Neurologists don't know much about auto-immune, and treating you for auto-immune fatgiue isn't the neuro's field!

I strongly suggest a second opinion. Check with and find the Lupus Chapter closest to you -- then find their web page or call them and ask which doctors are on their advisory board -- these are the drs really interested and educated in the treatment of lupus and other auto-immune disorders. (They will not "recommend" a specific dr, but can tell you which drs volunteer for service with them.)

Even without diagnosis, most rheumies will try you on plaquenil and possibly prednisone initially - part of the dx process is seeing what treatments you respond to.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Jul 2011
Total Posts : 17
   Posted 8/30/2011 10:32 AM (GMT -6)   
Thanks, I will look into that today. I almost think I should just stop seeing the neuro anyway. I don't have any symptoms of a major neurological disorder so seeing both a rheumy and a neuro seems kind of silly.

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 8/31/2011 8:18 AM (GMT -6)   
Don't give up and it is an excellent idea to check for a dr. on the advisory board. Please oh please see a hi risk ob to follow your future pregnancy closely. Find one who treats AI. I have lupus and antiphospholipid antibody syndrome and lost 5 babies because of it. The specialist I finally saw, in grief and desperation, said had I seen him after my second miscarriage, it could have been sucessfully managed with prednisone and heparin. But by the time I had my fifth loss in 5 years, he felt my antibodies, that come and GO!!!!! (a good dr. should KNOW that this is an expected characteristic of AI illness and doesn't mean.... a. you're not sick  and b. you're CURED of whatever you imagined  you had...)  would likely be triggered by another pregnancy itself. It still hurts and I am grateful to God that I had 2 healthy daughters before my APS dx. Take care,

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night. Advair, Albuterol and DuoNeb inhalers.

New Member

Date Joined Jul 2011
Total Posts : 17
   Posted 9/1/2011 6:41 AM (GMT -6)   
See my rheumatologist told me that if/when I do get pregnant I won't be considered high risk and won't need any special prenatal care as those antibodies that affect pregnancy were negative. But then in the next sentence he told me when I do get pregnant he wants to see me right away and be contact with my OB/GYN throughout the pregnancy. Now I'm concerned about getting pregnant. I have two children ( a boy almost 3 and girl 20 months) I miscarried before our son very early in pregnancy and then I miscarried just this April at 9 wks. It had seemed to be a healthy pregnancy. Lots of morning sickness, strong heartbeat on two ultrasounds, went in for some light spotting (which I had with both previous pregnancies) and there was no heartbeat. So even though all those tests are negative right now they could become positive if I get pregnant cause my rheumy made it sound like when I'm pregnant my antibodies won't change and that pregnancy wouldn't have any negative effects on me.

The rheumy basically told me that my immune system is active and there are alot of antibodies present but right now that aren't doing anything...they are just hanging out. He said I should be glad I'm not having any symptoms. But if thats the case why am I so fatigued all the time without cause as I sleep good at night and don't perform manual labor all day, why do I get stiff and achy? Why do I get tingly and pins and needles sensations? Why am I nauseous and sick to my stomach all the time? I can understand if he doesn't want to label it Lupus without me having 4 of the 11 symptoms but to tell me I'm not sick frustrates me because a healthy person doesn't feel this way. And then my neurologist is handing adderall out like its candy and yes it helps me function and make it through the day but it has some rather unpleasant side effects like irritability, loss of appetite, heightend anxiety...and thats on 20 mg a day and she wants me to take 40???

I plan on emailing the lupus foundation chapter in my area today before I head to school, never got a chance to the other day. I really appreciate this advice...would it be good for me to see my OB before I get pregnant as well and give her all my test results so she is aware before I even get pregnant that these things are going on? She is an excellent doctor and I know she will do whats medically best for me.
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