Pain in spine, arms weak, RA (wrong?) diagnosis

[NOODLEARMS]

Starting approximately 8 years ago, I had a lot of severe pain in my neck that radiated to the base of my head. Muscles tensed up and became chronically rock hard; I got many migraines from this stiffness. This went on for years. I walked a lot during this time, and I noticed osteo arthritis becoming worse in my knees and feet. My left foot would drag, but I blamed my shoes. I also had (beginning early in the year) severe sinus pain (chronic inflammations) that seemed to affect my eyes, the pain was terrible, I could feel the pain sometimes behind my eye (s) and they were red often. This could go on for weeks every year beginning in March and occurring often till late fall (freeze). I lived in SD with limited healthcare, and I knew little what my problem was, I assumed it was allergies. I kept on working with pain in my neck. My hands became more painful, and I had a hard time writing by hand for long, it felt like acid fire in them. I never had swelling in any limbs, ever. 3-4 years ago things got worse. My fatigue level was so bad I wished more than anything it would be evening and weekend already when I woke up. I had a hard time with energy standing up and had to sit down often. I continued to have the pain in my neck, migraines, and sinus/eye pain. My back by my hip have been bad for years, I have not been able to lie on my back because of the pain and stiffness. My arms have gotten worse. I can’t even whisk gravy for long, my whole arm feel like it was one fire, severe pain (both arms are like that), and if I keep pushing, the arms will go numb and refuse to function any more, the pain becomes unbearable. I can hold my baby daughter on my hip, but moving my arm in repetitive movement causes this pain. At times I have the same acid feeling in my leg muscles when climbing stairs. After helping my landlord scrape paint off some windows one cool summer day, I soon got sick, ended up so weak I could only lay on the floor for 4 days. I had no nausea, but a feeling of unreality in my head, the most severe fatigue I’ve ever had. I could not stand on my legs, if I did, my head felt like helium, I could not focus my eyes, or think a clear thought. It was like if I was on drugs. I then called a doc. I met him once, he ran blood work. I came back; he asked if I had pain in my limbs, knees etc. and about nodules. I said I have pain in hip, knees, elbows, hands etc. and, yes, a nodule on my wrist (from OA). He said I got RA (Ra F 278) and put me on 2-week prednisone and Plaquenil. My back feels weak and painful, nothing works for the pain, and it feels weak. It sometimes feels like it’ going to break when I lean over a sink and I have to stand straight fast. My right hip causes problems at ties with pain, even at night. I am stiff in my back in the morning. I had two attacks of severe vertigo with vomiting, one recently. It lasts for 1-2 hours, and I am very weak, I do not know how I appear to others since I am single w/ kids. Both times I was woken up by it. I had to hold on to walls when walking. No headache, but I can recall a feeling of fullness/swelling in my neck preceding the incidents. I have dizziness with a lot of low-grade fevers where my back also hurts, from the hip up to my neck. I can barely get off the floor once down. I run chronic infections and IBS (I assume, never got a diagnosis). My current doc. never mentioned a referral to a Rheumy, and no testing, imaging of my hands, arms, spine, and knees. Blood work shows only Ra Factor of 256 last time (4 weeks ago). I am very fatigued, sick feeling, and tired of not being heard. I believe there may be cervical nerve compression. After flares or during stress I forget where I am driving/ where I am. I forget words. I get better, I have good days too. Some days I can’t turn my head at all. I have no swelling, I think I got AS, not RA? How do I get my doc. to listen?

[Kevin Pho, MD]

If you feel that your physician is not listening to you, I would suggest changing doctors or obtaining a second opinion.  

X-rays of the affected areas can be considered to rule out other causes of your symptoms.  

If AS is considered, blood tests to look at the ESR, CRP and HLA-B27 level can be helpful.  Imaging of the sacroiliac joint should be obtained - first with plain film, and then with MRI if the diagnosis is still in question.  These considerations should be discussed with a rheumatologist.

Regarding the other symptoms like headache and memory loss, I would consider a neurology referral.  Neuroimaging with an MRI can be considered.  I would also consider an MRI of the cerical spine to rule out any nerve compression.

These options should be discussed with your personal physician, or in conjunction with another opinion.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_b

[myproblem]

By AS, do you mean Ankylosing Spondylitis? This is dignosed by spinal x-rays which would show spiny growths on the vertebrae. RA suferers often have other autoimmune dysfunctions. There are actually 80 autoimmune diseases. Did you get any other blood tests? ANA? Scl? You should have an entire autoimmune panel run if you haven't already. I am 30, and I have had increasing problems since age 15. I only knew about RA when I got started on this roller coaster ride, so I didn't know what to ask for next. Autoimmune diseases (even RA alone) can affect almost any body system, not just the joints. The good news is that the treatments for most arthritic autoimmune conditions is the same. Plaquenil is the first line for disease control. You do have to take it for at least 3 months in order to see if it works for you. Prednisone is great for short term treatment of severe flare ups, but not soo good if you have to take it for a long time. With all of these diseases you have to stop the progress in order to prevent permanent damage. There is a newer class of drugs referred to as DMARD's. One of these is Arava. This is very expensive though even in it's generic form ($400-500 a month), so it depends on your insurance whether this will work for you. I have not noticed a ton of relief from joint pain yet (6 weeks so far), but I do have more energy, and less fevers. There are many new drugs in this category, but I'm not familiar with many of them yet. Give the Plaquenil a fair run. It is well tested, and inexpensive, as well as pretty safe. I think it is the only one you can take if you plan to become pregnant anytime soon. I had to give that up for my health.  :(
I hope this helps, and please post with any more questions.

[NOODLEARMS]

I have had Plaquenil for 7 months. All other tests ANA, sed rate, Lupus, B12 was negative. I have no joint swelling. I think the RA diagnosis was hasty. I should have gotten better after 7 months.
I forgot to mention that I had electric shock sensations down my spine (NOT when I tilt head forward, but when turning left or right, and increasingly when tired or feverish. I am more concerned about the Cervical spine, I suspect degeneration from OA and possible nerve compression. A referral to a Rheumy would be nice, but in this small town it seems to be a dream only, and my insurance demands referral, so does the Rheumys in the area. Thanks for response though.

[myproblem]

The RA test can be positive in people without the disease, but I don't know statistics on that. There are also seronegative forms of almost all autoimmune diseases, meaning that the blood tests don't show anything. I was very hard to diagnose because my test resuts did not fal into the expected ranges for any disease. That is one of the reasons that it took so many years for me to get any diagnosis. Either way, you do need to see a rheumatologist. I live in a small town too, and there is really only one of each specialty. Push your Dr. for a referral. If he won't give you one, get a new Dr. even if you have to drive to the next town. Plaquenil only works in about 50% of patients. You should also consider trying a different type of drug. I have been on Plaquenil for a year, but it doesn't help my symptoms. I take it to prevent Lupus related blood clots. Like I said before, Arava seems ok so far, and there are a host of others out there. Also, have you had any x-rays? This would be super important if you suspect any degeneration. Even if it is RA, and x-ray could only help. The electric shock sensations soud like a compressed nerve. This could indeed be due to degenerative disease, but OA, and RA are both degenerative.

[NOODLEARMS]

Thanks alot for replying. My current doc. IS the "second opinion". I have seen him 3 times, and on the 9th I am going there again. I will ask what his plans are. He also wondered why I had no swelling if I have RA. I looked at him and said: well,you tell ME! I will push for some more help. No x-rays or anything have been done, not a yota, no poking or prodding since my diagnosis last year. I am starting to wonder if this is all the labeling-syndrome where my disadvantage is "female close to 40". LOL! I am sure things would have moved on faster if I was a thirty-ish male, sorry to say. Thanks for all support, this is a fantastic site!

[WikiHealth girl]

These symptoms do not sound like AS: http://www.wikihealth.com/Ankylosing_spondylitis


but do sound more like symptoms for MS. http://www.wikihealth.com/Multiple_sclerosis
maybe look into that. keep us posted and Good luck!

[missmellie]

To see whether you have the genetic marker for AS, you should have the HLA 27B blood test, I have been chronically ill for over 5 years, I had a bad back when I was 17, eveidence at a young age of degenerative disease, only to find out 18 years later that I have AS, I too was diagnosed with fibro, NOT, I do have fevers pins and needles, thought it was MS, but so far that has not been true, You need to get a second, third opinion, I saw my third rheumy and he diagnosed me on the third visit, I was elated after so long to have that, although I am no where from being pain free, its gone too far but hopefully soon with the proper meds I can get some relieve. I have stomach involvement and lung becasue it hads affected my rib cage, I think that the arthritis diseases in women are especially hard to diagnose as we are viewed to be whiners, we feel pain differently to men and AS is not usually found in women, more so in males, european descent