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Rheumatologist or Neurologist?

Mar 28, 2016 11:15 PM

I've been going back and forth with my primary doctor for about 5 years now about this. eek It started with just some pain in my hip and a little in my back. It lasted for a few weeks then was gone. A few months later the hip and back pain came back but this time it brought along knee and ankle pain. I kept telling her it feels like a deep like down to the bone just ache.

She sent me for a ton of lab work and ruled out Lupus, Lyme Disease, and any issues with my Thyroid. My rheumatoid factor was at a 7. She said it needs to be a 14 or plus to be considered a rheumatologic issue.

Every time I have an "episode" it seems to be worse than the slat. Right now I'm going through another "episode" and I feel dizzy, lightheaded, I'm having muscle spasms, my toes and fingers tingle, I've been forgetful, hard getting thoughts out when I'm talking, so tired and weak all the time, my balance is off, I'm depressed, I now have 0 sex drive, mood swings, hard time falling asleep, headaches are frequent, I get winded doing simple tasks now, constipation, my eyes are blurry sometimes... This has been my worst episode so far.

She wants me to see a Rheumatologist. thinking Does this sound Rheumatologic? I don't want to waste my time at a Rheumatologist if they're just going to say my rheumatoid factor is too low and I need to see a neurologist, MS does run in my family but I do know that doesn't necessarily mean anything. Should I be seeing a neurologist? Does it sound like I'm on the right path? I don't know what to do? Any thoughts?

Mar 28, 2016 11:17 PM

Also have a pain that wraps around my waist like I'm always wearing a corset.

Mar 29, 2016 12:18 AM

Your pain sounds a bit like mine with the corset feeling and progression of symptoms. Mine was more tingling and burning that deep pain. They thought I had ms, but it turns out I do not. I only went to neurologists, not rheumatologist.

Mar 29, 2016 1:38 AM

Make sure you know your thyroid numbers doctor love to tell you it is fine when it is not. Has your vitamin D been checked? Have you had xrays or mri? The back hips bone pain are all to familiar in my world or spine issues. I started complaining about bone pain in 2005 no one has ever given me a good answer. Have you tried a D.O. the one I went to figured out more than my doctor or specialists at that time.

Mar 29, 2016 2:21 AM

BeausMomma- I have MS and fibromyalgia & I have All of the symptoms you mentioned. I believe those are MS symptoms but only the docs can say for sure. Might they want the rheumatologist to check to rule out something before they test for MS? Do let us know what you find out.

Mar 29, 2016 9:39 AM

I'm not sure where to begin for treatment. I don't know if I should go to the Rheumatologist first or Neurologist. The speech problems, concentrating issues, forgetfulness, are really scaring me.

Mar 29, 2016 12:09 PM

I am completly the same way, seems more symptoms are progressing. I've been treated by my family doctor and think like you. I am not sure too whether to see a neurologist or rheumatologist. My best friend was just diagnosed and they are referring her to a rheumatologist. So Im stuck what to do next. I hope you get lil relief. Any suggestions others????

Mar 30, 2016 1:54 AM

Just my opinion, Neuro first! Rule out all neuro disease processes first. Then , if spine and brain are clear, then Rheumatologist. MD.s and nurses are trained to assess critical systems first, head to toe..i dont have MS, Fibro,Lupus,Or CRPS but I can read any number of replies and can identify to symptoms.... It's scary. I can if I let myself get consumed by reading everything , I swear I will have every disease that my friends do...we all do it...its human. Let the Neuro guy investigate first.you do have neuro symptoms... As well as others. It like having cardiac symptoms and questioning people when seeking appropriate medical care is the thing to do.but you don't go to the cardiac doctor because you don't think you have the proper signs?

Mar 30, 2016 5:43 AM

I just read about protein deficiency. I KNOW I HAVE THAT. Just an idea. It causes severe muscle and joint pain.

Mar 30, 2016 5:48 AM

What nurological diseases should I ask about? I have muscle pain from hell. In the mornings my low back hurts, but after I get up and moving my middle back spine and muscles HURT! NOBODY LISTENS! THEY SAY MY LEVEL OF PAIN MEDS SHOULD BE DOING THE JOB...THEY ARE NOT!!!

Mar 30, 2016 8:45 AM

Rheumatologist.. sound like autoimmune progression. Not all autoimmune disease resulted for rheumatoid factor.. some patient didn't have it..it called seronegative rheumatoid arthritis. Means that u have most symptoms of RA but the clinical test for RF is negative or low. How about ESR CRP test? If abnormal which is have high number than normal level usually rheumatology still consider for autoimmune problem.

Mar 30, 2016 10:37 AM

Blood tests are not definitive. Definitely see a Rheumie. I was told for 2 years nothing was wrong. Only positive test being some osteo in my back and hips and my ANA test which docs decided was false. God only knows why when I was so sick. Like you, I've gotten progressively worse fast over 2 years. 2 Rheumies, an ENT, my GP and pain clinic blew me off. I didn't give up. Longer story short. I've since seen an internist. He found autoimmune illness immediately. I'm quite ill and every doc that should have known up until now missed it.
The intern believes I have Scleroderma, lupus and sjogrens. I've now been diagnosed with Raynaud's. I go for my follow up from further testing in two weeks. Don't even give up if the first specialist blows you off it's sadly very common. You know your body better then any doc ever will. They work for you. Sorry you're going through this.

Mar 30, 2016 11:34 AM

My C-Reactice Protein is 8.9. But I take BCPs, and that can skew the results by up to 30%! It is still far over what is 'normal', but I also have fibro, and there are days I just feel like I'm made of inflammation.

Have them run an IL6 test as well as a good blood test for any deficiencies in nutrients.
Do you live alone? Have your neighbors developed physical symptoms too?

Mar 31, 2016 8:46 AM

No I live with my husband and dog. I'm the only one experiencing any symptoms.

Mar 31, 2016 1:15 PM

BeausMomma, hello again. I am sorry your are not feeling confident at this point in which direction you should go. We all here just want to help, however it can be overwhelming with so much input. Don't get off track here....okay? Tell the Neuro doctor exactly what you replied to me. Start with that.where it hurts, what makes it worse or better, what pain meds have worked. Etc.. Start there. Then let him help you make the decision about a Rheumatologist if he thinks it's warranted. Love, Terri

Mar 31, 2016 1:19 PM

Thank you Terri! I have an appointment with the Neurologist April 25th. Just gotta hang on until then.

Mar 31, 2016 1:22 PM

Super duper! Hey anytime you need to actually speak or chat someone you can chat in our little fire circle, or call or text me...903-714-1644.. If you or anyone new needs add me on Facebook and join our wonderful little chatroom that We keep running 24 hours/7 days .

Mar 31, 2016 1:37 PM

I'd love to join your Facebook group

Mar 31, 2016 1:38 PM

Coolness!!!!!!! OK , what's your name on Facebook, I will send you a friend request and we can add ya on Messenger!!!!!!

Mar 31, 2016 1:41 PM

Trisha Rath is my name on Facebook

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