Or more specifically, do you have a neurologist on your team? I had seen several previously while trying to find out what was causing the progressive weakness/numbness all along my left side and when blood work was finally done with some positive RA results, I was referred to a RD. I haven't seen a neurologist since but I'm wondering if I need to because the meds I'm on are helping with some symptoms but not the original and most worrisome, the left-sided issues which are now progressing to the right. The RD sees me again in 2 months and will decide what to do if I still have no improvement. Should I just wait for that or should I be talking to a neurologist again? It seems some of you have a neuro in addition to other doctors on your medical team. What is it about your symptoms that required the neuro? I'm worried about the nerves being damaged to the point of no return, but I want to give the RD enough time to do his thing. I've been on meds only since May so maybe I'm being overly anxious here. What do you think?
Also, do you still, or did you ever, bring someone (husband, friend, etc.) with you to your RD appointments? I did at first but now I don't and I'm wondering if that was a good idea to start going alone.
[QUOTE=Jesse88]Also, do you still, or did you ever, bring someone (husband, friend, etc.) with you to your RD appointments? I did at first but now I don't and I'm wondering if that was a good idea to start going alone. [/QUOTE]Okay, Jesse, I always enjoy your posts and your POV, but it's unbelievable that I literally just signed on to post this exact same question!
My husband is going with me for my first RD appointment in two weeks. I've gone through a lot of female issues over the past decade, and I've always handled those alone. But this is a bit scary, so I'm taking someone with me to make sure I'm not hearing what I think I should hear, but honestly what the doc is saying.
Might I ask, how was the doctor and staff when you took someone with you--did they give you a hard time?
As for seeing the neurologist again, I commend you for pursuing this other situation instead of just chalking it up to the tissue disorder. If for no other reason than your own peace of mind, I'd go back.
Also, if things are "progressing," as you explain it, you don't want to wait those 2 months if there is something that can be done now.
Best of luck.
I don't bring anyone with to my appointments, but I don't have much trouble understanding the issues and asking questions. On the other hand, I usually go with my husband to his cardiology and neurology appointments, as he doesn't have a strong understanding of his illness (mild heart failure from a heart attack several years ago) or the medications used to treat it. He's just not a scientific type (he's a senior manager). On the other hand, he is very good dealing with the insurance issues and getting the various doctors' offices to work together when either of us has an issue. It works out pretty well for us - I understand the geeky stuff and he understands the human interaction stuff.If hubby can take off work, he comes to my appts. otherwise I go by myself. I haven't noticed my doctor's behaving any differently whether hubby is there or not. With my first rheumy, it was a different story! Hubby was there for the first appt. and after that, I went by myself. He was such a jerk I would leave there crying after every appt. I told hubby about rheumy's demeanor and he was shocked. He made a point to go to the next one, which was the last time I ever went back. Hubby was furious with him.
What can I say Christina, great minds think alike!!
I noticed the RD seemed more relaxed and generally more pleasant when I went alone. I explained previously that I like to have another set of ears in case I miss something, but I got the feeling he was uncomfortable with my husband there. Don't know why or even if I was just imagining it. It will be interesting to hear what others say, like Jasmine. She seems to have a good strategy there.
As for the muscle weakness, the RD thinks (but is not sure) it's part of the vasculitis and thinks this or another RA type therapy will work. I don't know. I don't want to go "over his head" if I'm being too anxious, but don't want to waste time either. Just where does the RA stuff stop and the neuro stuff begin?
[QUOTE=owiedeb]
I have a neurologist I see every 6mo. for follow-ups on my peripheral neuropathy. He's done MRI's to rule out MS a couple of years apart.
[/QUOTE]
What caused your neuropathy? Was it the result of RA?
I assume it is caused by my RA, I honestly never thought to ask where it came from. It was my Rheumy who sent me to the neuro. for the first time. He did an upper and lower EMG. I heard horror stories about how painful the tests are, but I worried for nothing. It really was no big deal.Yes, I've seen a neurologist for numbness in my legs and feet. Was diagnosed and am receiving treatment thru my primary care doctor.
My husband goes to all my appointments and it has nothing to do with my understanding of the issues. I was a surgical nurse for 16 years. He goes with me because he wants to learn as much as he can about the chronic immune diseases that I have. They mystify us sometimes, so you can imagine how our spouses feel. Plus it's nice for me to have the support of my husband. Sometimes the visits can be frustrating.
My RD and primary care doctor have always welcomed my spouse. We usually end up talking about our lives after my exam and questions are answered. Both my doctors are very social and outgoing. In fact my RD offered me a part time job if I wanted. No way, I'm retired!!
I almost always go alone to various appts. But I had wanted to change from remicade to humira for a year because it was losing it's effectiveness, and I just could not get my RD to 'hear' me. So I brought my husband along ... and I walked out of that office with a script for humira. So yes it can help to bring someone along. (If my doc had not made the switch I was going to change docs.)
If I was continuing to have nuero problems I would go back to the nuerologist ASAP. Make the appt today so you can stop worring about it!
I've had RA for about 13 years now and I'll have my first appointment with the neruologist next month. I've had some very scary symptoms with numbness and tingling that my RD thought could be caused by Humira. After being off Humira for months the symptoms still presist so he insists I see the neruo. He thinks I have some neruopathy in my lower legs as well as CTS. Hopefully the neruo can pin point something that might allow me to go back on Humira. I really miss it.
I also have some obvious nerve damage in one leg from an old surgery years ago. Lyrica has helped.....but not as much as we'd hoped.
I think I'd go ahead and set up the neruo appointment if I was you. It takes a while to get in and often you have to have another doctor call for you. Not sure if since you've been seen before you'd have that problem or not but my appointment was set two months out. A longer wait than I'd hoped for but I"ve lived with these problems this long.....I guess a few more weeks won't hurt, right?
Good Luck.
OK, the general concensus seems to be that I should see the neuro. ASAP. My concern now is that my RD is going to be annoyed that I did it without talking to him first (I know, I'm a wimp, it's my middle name). I'll see if I can muster up the kahoonees (sp?) to do it. It probably will take months to get in anyway.
I also think next time I'll bring my husband so he can help me push the RD about this numbness business too.
Lin, do you know what has caused your numbness? I'm just trying to find out if what I'm experiencing is a common side effect of connective tissue diseases and how many others have numbness as a result of RA/lupus, etc.
Thanks everyone for your responses thus far.
Jesse, had a severe onset of RA just about the time that I blew L5/S1 and developed sciatica. Had decompression of the disk space and removal of muliple arthritic nodules from my spine. I still have numbness and pain in my legs due to sciatica and PAD. The only reason I need pain meds now is the pain from the sciatica and PAD. My RA and PA are both being controlled very well. Lyrica has helped the nerve damage but by late evening the pain is back if I've been active during the day. I may have to increase Lyrica. Am going to call the RD tomorrow. You've got the kahoones, you just need to find out where you put them. Go for it. Lindy
Well last week I made an appointment with a Neuro at the same clinic as my Rheumy and did not tell the Rheumy first. I really get along well with the RD and was not up to going to an appt. just to tell him. He has access to the file anyway.
We know our bodies best. Here are my neuro symptoms and I decided they needed attention. I had the brain MRI yesterday and am awaiting her call. She did find that I see double in my right eye. It is amazing how we adjust our eyesight, I didn't even know that symptom.
Difficulty in urination
Hand tremors
Limb and body jerking
Numbness in toes and/or feet and ankles
Sharp pins like feeling in feet
Stumbling/Tripping
Cognitive probs, lol.
Take care everyone!
Have you already had your appointment? Did the neruo order the brain MRI? What other test did they do? I've heard lots of folks here having the nerve conduction testing. Did they do that?
Sorry for all the questions; but I'm a little anxious about my appointment next month.
Question: I get this sensation in my left leg that feels almost like cold chills. Not cold and it's really random and just in that left leg. Does this symptom sound simular to anything anyone else has experienced? I guess you could call it tingling; but I think it's very simular to when you get cold chills.
Hi Lovie,
Amazingly I called last Wednesday, was put on a cancellation list, then they called right back for an appt. the next day. She was wonderful. After listing my symptoms she did a simple eye exam like I had to look at her nose and count how many fingers she had up or let her know when I could see her finger as she brought it towards her nose and I said (both of them?).
She then told me that something was wrong with my right eye, which I had been having pain and burning in for quite a while, and ordered the MRI.
Lovie I had the nerve and muscle conduction tests 2 years ago and had L3 Radiculopathy (sp) and moderate Peripheral Neuropathy. I imagine by reading your posts the neuro would do these tests.
I do get a sensation of cold or like water running over my lower leg. I told her about it also. I also throw off my shoe as it feels like something is biting my foot but of course nothing is there. She said if the MRI was good we would go to a lot of blood work (again, lol). Also the Enbrel could possibly be the cause but she wanted to explore that last since I would have to stop the med and then do a wait and see.
I hope you have a good appt. next month Lovie.
Take care
My RD thought the Humira might have been causing my symptoms too. We stopped it but the symptoms continue. Thanks for the info Bonny. Seems like it's one thing after another.
I would see the neuro and try not to worry what the rd thinks. She referred you to the neuro in the first place anyways, right?I go alone to mine and Hubby goes alone to his .
We both keep well informed about the others conditions, and are willing to learn more.
I have an RD, a great PCP and a marvelous cardiologist all of whom stay in touch with each other. All records and blood work are shared. When I was seeing my pulmonologist he was kept in the loop as well. Same with my gastro.. I'm so lucky to have great drs.
Thank you all for your input. I'm amazed at how many people have numbness, tingling, etc. mostly on the left side. What is it about the left side?
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