Oh Dear, is it just me?

[Tennwalker1]

Going to see a neurologist July 25th,. So I called his office to see if we could do my blood work before I get there so he would have the results in his hands so we can talk about it. The careteam person I was talking to said you we don't have any blood work on you in your file. I said I know that's why I want to go ahead and have it done so he has it. So she said well he might ask for it when you're in the office and I said yes if he's going to I would rather go ahead and have it done now, so I can speak with him about it. She said what kind of blood work are you thinking about. And I said probably he'll want to see my iron levels,magnesium, ferritin, whatever goes with having restless legs. So after a long discussion I said that's all right I will just wait until I can speak with him about the blood work if he decides to do it he can do it at that time. My first visit...shouldn't he ask for blood work. This is driving me nuts. Doesn't anyone know about this disease that can help!!! I have hit so many road blocks. I have a feeling we are wasting our money again on another doctor. I had such high hopes. Ugh!

[Hidden]

Hi, I'm guessing you're in the US. Here in the UK it isn't always the case that a doctor orders blood tests BEFORE you see them. However we have to be referred to a neurologist (or any specialist) by our GP (General Practitioner) and sometimes they often order blood tests before we are referred. Perhaps you could ask your Primary Care team to do some blood tests.

I wouldn't automatically presume the neurologist is poor before you see them, but I guess it helps to be a little sceptical and ready to push your point.

[Tennwalker1 in reply to Hidden]

Hi Manerva, Yes I'm in the US. I guess I did jump the gun, but I get so frustrated. I just want someone to know what I'm talking about. Some insurances here require a referral, but others don't. Ours doesn't. I've asked our gp's office to make a copy of last blood work for me to take with me. They said they would. Thanks for your help, I'll try to be a bit more positive. 🤔

[Graham3196 in reply to Tennwalker1]

I think you are right and if he didnt want path results at least on iron then he doesnt know much about RLS. ASK your GP for a reference to a specialist wgo knows about RLS. Ask your GP to phone the specialist they are recomending and find out if they have a clue. I dont know what the specialist will cost you but I visited a neurologist who knew very littke about RLS and it cost me about $300 to get tild there was nothing he could do for me. He was ignorant and nowadays i would havr refused to pay for his non service but i was niave in those days. Specialists are mere humans who were good at exams and may be useless at curing illness.

[Parminter]

Surely your GP could do it, and have a copy sent to the specialist?

You need a general blood panel which includes serum ferritin and transferrin. Not rocket science.

[jan_ET]

I know how you feel- we have to be very assertive unfortunately you could have your blood tests through your GP and take the results in with you - hoe that helps - Jan

[Graham3196]

Is there any reason why you want to see this particular neurologist? He or she seems to have shown they know nothing about the first step in treating RLS. What's the point of spending any more money visiting him/her?

[Tennwalker1 in reply to Graham3196]

Well Graham3196 he was recomend to me buy another. I'm into this RLS game about 40 years. I'm ready to find a doc I can depend on. Lol. Like that's going to happen. Thanks

[Hidden in reply to Graham3196]

That's not entirely true, just because they've not asked for blood tests before the consultation doesn't mean they know nothing about RLS. Perhaps they want to do an assessment before possibly wasting time and expense in carrying out the wrong or unnecessary blood tests. Who knows what the reason is.

[Tennwalker1 in reply to Hidden]

That's true. I hope your right.

Thanks

[Long_Islander in reply to Hidden]

Maybe it's because they want to get you to come back for another visit to discuss the details of your blood test and charge you for two visits.

By the way, did the person you talked to ask the doctor if you should get a blood test or were just too dumb to think that would be what they were supposed to do as part of their job?

[Hidden in reply to Long_Islander]

I think you mean't to reply to Tennwalker1 not me. To do this you needed to click on "Reply" immediately underneath the comment postefd by Tennwalker1 not the "Reply" underrneath the comment I wrote.

[marsha2306]

If this is before your visit, hopefully your doctor will send you for bloodwork after your visit. I have found, and I’ve been to soooo many doctors, that they will only send you after they’ve seen you. I agree with you 100% that it makes more sense to have those results before so you can discuss it.

Btw, where do you live? I’m in Maryland.

My guess is the he wants to discuss your situation and then order tests. Good luck.

[Tennwalker1 in reply to marsha2306]

Hi marsha2306, Yes, I'm afraid you're right blood work after he sees me. I just hope he takes an interest in my situation, not that I'm wanting special treatment, I'm not, but someone who acts like he cares. I've had my Hope's up so many times just to be let down. He will probably turn me over to the care team. And that's ok, sometimes they're better at what's going on then the doc.

Thanks again!

[Tennwalker1 in reply to marsha2306]

Ps. I'm from Missouri.

[kcbeachgall]

Hi, I feel for you. What makes sense to us doesn’t happen anymore. I haven’t been able to get bloodwork done prior to a visit to a new doctor visit in years. I think it’s more because of money/insurance. Unless you’re seeing a self-pay physician, he/she doesn’t make that much from insurance companies and that’s why they cattle drive patients thru their practice to be able to keep their doors open. It’s really a shame. Of course, it could also be because the doctor may want to request additional tests than those usually asked for so it would save you an extra visit to the lab.

I’m going to see a hematologist due to an unusual low white blood cell count but I’m going to also explore the RLS issue.

Good luck with your doctor visit. Kathy

[Tennwalker1 in reply to kcbeachgall]

Thanks so much, kcbeachgall. I really hope you're right about the additional tests that would make me happy. My husband has an appointment with the our GP today and I've asked them to give me a copy of my blood work. So I'll at least have that to take with me if he doesn't do testing. Gosh, I'm just praying he doesn't blow me off. And like its no big deal. Thank you again

[RLSdaily]

First,I agree not all have a clue even if they are doctors, however due to insurance and fraud and the covering his ass. I wouldn’t think they would order any test without being seen first. I get it you wan to discuss the results but first a diagnosis has to be made. An icd 9 code for your insurance

[Tennwalker1 in reply to RLSdaily]

Thank you RLSdaily. I agree maybe he does not want to do blood work until after he sees me. But I've been dealing with his nurse practitioner. And she was helping me and then running things by him that we're going on so I just kind of figured he'd want to go ahead and get blood work. I just would rather talk face-to-face then having someone call me with the results over the phone. Then they usually just tell you you're in the normal range. You don't get to see any numbers. Thanks again for your input.

[RLSdaily]

I understand. Sign a release of information at their office and have a copy of the results sent to you.

Good luck. I had one doctor tell me iron was in normal range and another have me get an iron infusion( same blood test) I did the infusion twice and did not see and benefit.

[Tennwalker1 in reply to RLSdaily]

👍

[Graham3196]

On several occasions when I have been referred to a specialist the GP has arranged blood tests with a copy of the pathology report to be sent from the path lab to the specialist in anticipation of their requirement. In Australia this costs me nothing so its better to have a recent blood test. I think its the responsibility of the GP to find a specialist who knows about the illness you need help with. After a lot of shopping around I have found a GP who took the trouble to ring several specialists until she found one who knew a bit about RLS and agreed to an iron infusion before she wrote a referral. It took a day for her to find him. Rare care. Other GPs on other matters have just given me a list of 20 specialists in the neighborhood and told me to choose one and make an appointment.

[Tennwalker1 in reply to Graham3196]

Graham 3196,

It sounds like 1 of your gp's was right on target in helping you. The other not so much, just pacifying you and left you to do his/her leg work. Happens all the time. Far too many times it happens. ☹