What can a neurologist do that any other doctor can't?

[Wombat140]

Sorry, another question:

Since August I've been seeing a doctor, Dr. Goyal, who knows something about PANDAS, and trying various antibiotics and supplements without any clear result. (One difficulty is that I have a needle phobia and so far it's proved impossible to get a blood sample from me, so he's going by trial and error.) He's now very eager for me to see a neurologist. Only explanation he gives is that "There are treatments we can't offer you that the neurologist might".

 

Now, it'd be very difficult for me to visit this neurologist, with my OCD symptoms the way they are. Apart from anything else, he can only see me at the hospital, and the hospital is always full of bleeping noises and burbling TVs, which sends my sensory sensitivities haywire.

 

My OCD will not let me take any kind of psychiatric drugs (I know - you'd think the darn thing had a survival instinct). Dr Goyal has said already that it's most unlikely that anyone would give me IVIg or plasma exchange treatment (even if anyone could get a needle into me, which they couldn't). Given all this, do you think there's actually anything the neurologist could do for me that Dr Goyal couldn't? The neurologist doesn't claim to know anything about PANDAS, by the way.

 

Many thanks,

Wombat140

[Missmom]

Are you simply afraid of the needle itself or of the pain of the actual blood draw. You really should get those labs run so it will give you a bigger picture of what you are dealing with. If it is the pain of the needle going in that scares you, you could try that EMLA cream which numbs it and you wont feel a thing. Just a suggestion. I use to avoid blood draws at all costs, that was until I got pregnant with my children and then I had no choice. I still have to close my eyes and turn my head.

[Wombat140]

I can't really say I'm afraid of anything particular that I know of, it just seems to be Pavlovian. I'm quite OK with the idea in my head, and until they get within an inch of my arm - then suddenly I'm on the other side of the room, AGAIN.

I'd be puzzled if it was that I was afraid of the pain, since I'm fine doing much more painful things than that normally. I think it stems from when I got an iron deficiency aged 7 and had to have blood tests about a dozen times. (Although it does seem to have got steadily worse since then.) I did have that stuff one or two of those times, it made it hurt a lot more. (Some weird autistic spectrum thing, maybe, or it could be in the family - there are several kinds of painkillers that don't affect my dad.)

[Mayzoo]

Have you tried halcion or klonopin 30-45 min before a blood draw? Those both calm anxiety a lot, and the halcion has an amnesia effect on many people so the do not even remember the blood draw per say.

 

Emla is not a pain killer. It is a numbing cream that is applied to area 30 minutes previously and it numbs the area almost completely. It is a bit like lidocaine. We have only tried it once with kiddo, but it worked well for her.

[Wombat140]

Like I said before, my OCD will not let me take psychiatric drugs of any kind. (Just reading about the amnesia thing had me twitching all over the place...) Little ********* that it is.

[Mayzoo]

Like I said before, my OCD will not let me take psychiatric drugs of any kind. (Just reading about the amnesia thing had me twitching all over the place...) Little ********* that it is.

 

You may need to get even a small grip on your OCD. Have you tried ERP, CBT, or any kind of therapy? The main way a doctor is going to be able to help you is through numerous types of tests. I hear the Rothman program in SF is a great program that empowers people to begin to take control of their lives again. There are several threads on here about it and how it has helped lots of people. What I have read says the cost is reasonable and that there is a place to stay right across the street.

Edited May 25, 2013 by Mayzoo

[Wombat140]

"Get a grip" not the most tactful way of putting it... :angry: OK, I know you didn't mean it.

 

The OCD IS the problem, that's the reason I'm supposed to be having all this stuff done. Believe me, I've been through CBT/ERP techniques until I want to scream, and if they made the slightest bit of difference, I wouldn't be stuck here messing about with hypothetical infections. Catch ********ing 22... I was joking just now that my OCD picks these things on purpose to prevent me doing anything about it, but quite seriously, it's beginning to scare me how much it behaves as if it had a mind of its own

edit: I'm in England so Rothman program no good to me, thanks anyway though. Sorry for stroppiness of posting. That tends to happen if I talk about my OCD too much...

 

That apart, can anyone answer the original question - i.e. as long as I can't take psychiatric drugs or have injections, is there any point in my seeing a neurologist, given that I'm already seeing this other doctor anyway?

Edited May 25, 2013 by Wombat140

[lfran]

Can't address your original question, but are you open to genetic testing that is assessed by a spit test? 23andme.com offers this type of testing for $99 US, without a doctor's prescription. A lot of us have found issues with methylation and the folate cycle, and although 23andme doesn't report on this directly, you can use the data file that they create for you with a third party (http://geneticgenie.org/methylation-analysis/) to get a good report on this. You can work around some of these genetic problems with over the counter supplements (special forms of the B vitamins, mostly) and some of us have seen a lot of positive results, neuropsych-wise, with this approach.

 

It takes about 7 weeks to get the results back, and it is best to work with a naturopath or integrative doctor to work with the supplements, but you CAN do it on your own if necessary.

 

Also, there is some implication of thyroid issues with OCD. Most thyroid testing does require a blood test, but there is a spit test for adrenal issues that you can do, and that may shed some (but certainly not complete) light on this.

 

Additionally, great plains laboratory, metametrix laboratory, and doctors data laboratory (and probably many more) all offer various urine, hair, and stool tests that might show something. A comprehensive stool test showed that my son had strep in his stool, which his neurologist thought was significant vis a vis PANDAS. You would probably have to pay out-of-pocket for these, and they mostly require a doctor's prescription, but that is another way to go. If you have a willing doctor, you could just try to start testing bodily fluids(and stool) that don't require a needle and see if that gets you anywhere at all.

 

And I have no idea of your finances and schedule, but when we were at Rothman they did say that people came to them from all over the world. They were far and away enormously more effective -- and efficient -- at ERP than any of the three OCD specialists we'd seen at home (California). They have intensive programs, so you can go one or two times a day, and can stay for several weeks at a time and they really make people address the OCD in a way that other therapists don't seem to.

[Mayzoo]

"Get a grip" not the most tactful way of putting it... :angry: OK, I know you didn't mean it.

 

The OCD IS the problem, that's the reason I'm supposed to be having all this stuff done. Believe me, I've been through CBT/ERP techniques until I want to scream, and if they made the slightest bit of difference, I wouldn't be stuck here messing about with hypothetical infections. Catch ********ing 22... I was joking just now that my OCD picks these things on purpose to prevent me doing anything about it, but quite seriously, it's beginning to scare me how much it behaves as if it had a mind of its own

edit: I'm in England so Rothman program no good to me, thanks anyway though. Sorry for stroppiness of posting. That tends to happen if I talk about my OCD too much...

 

That apart, can anyone answer the original question - i.e. as long as I can't take psychiatric drugs or have injections, is there any point in my seeing a neurologist, given that I'm already seeing this other doctor anyway?

 

I am sorry, I did not mean any offense by the wording. I hope you find some answers to help you.

[4Nikki]

I think there are limitations to the scope of PC physician so even though your PCP understands Pandas, there may also be other Neurological issues that need to be addressed like for example, genetic diseases. What ever the case, if your PCP is recommending it, then I'd seriously consider making the necessary accommodations to get the neurologist's opinion. Sometimes when I get stuck at my work, I ask my coworkers opinion. Sometimes it's useless. Other times they help me to address the problem from a different approach and then there are times the answer was actually obvious.

[Wombat140]

Sorry to disappear like that - situation changed a bit, and what do you know, OCD suddenly got itself wrapped round the whole question too, making it difficult to discuss it.

After a lot of practising I thought I might have got over the worst of the needle phobia. Guess what - now they won't give me an appointment! I am now considered a difficult case apparently, so they insist on referring me to the phlebotomy unit. Quite what that is supposed to achieve I don't really know - they still have to get a needle into me. My mum tried to explain (I can't deal with the phone myself) that the drive to the hospital would leave me in a twittering mess of compulsions and therefore much less likely to get anywhere, but it didn't seem to penetrate.

It's stupid, because the whole point is that I don't think I am a difficult case any more, or not as difficult. The doctors' surgery is only a short walk away, so I'm fine when I get there. And I know I can trust this particular nurse not to chatter and set my OCD off if I ask her not to! Had rather a bad experience the first time I tried, with a different nurse - I kept on asking her to stop talking, but that only made her more determined to keep chirping encouragement!

Sorry, just had to let off steam. We're going to have another try at convincing them when my mum can face it.

lfran - well, see above for the chances of getting me to San Francisco. The state I'd be in by the time we reached the airport (certainly if it rained - problem with windscreen wipers) they'd refuse to let me on the plane. But thanks for the suggestion, and the testing suggestions too.

Mayzoo - no problem, I didn't really think you did, I just had to be cross with somebody!

4Nikki - fair point. I'd just feel a lot happier if I could get any clear answer out of Dr Goyal about what use he expects the neurologist to be - I have a horrible feeling that he's just referring me on the off-chance, and I don't feel inclined to go through (and put my parents through) an ordeal like that on an off-chance! (Dr Goyal hasn't actually seen me during a real OCD crisis so maybe he doesn't quite appreciate.) Also there's been no suggestion that the neurologist knows anything about PANDAS, or any other non-standard approach to OCD or tics, so that rather narrows it down.

Well, will try and remember to let you know what happens!

[4Nikki]

Try making a video. It is often more difficult to articulate the details that videos make clear.

[Kathy4Him]

We have seen 2 different neurologists. One in the beginning just did mri, found nothing. The 2nd Dr. last year ordered spinal tap and mri, and lots of blood work which was different from anything else we had previously ordered. He found 2 arachnoid cysts on brain thru mri. He was from Jordan and said he learned about and treated pandas in his country before moving here. interesting...He worked very closely with our treating Dr to determine plan of attack for pans/pandas. I think it is easier for a neurologist to order mri of brain and spinal tap mainly done to "rule out" anything else.

 

By the way, my son did CBT at Rothman in 2010. at the age of 21. 4 weeks did not help at all. At that time they were not interested in talking about pandas. I think much has changed now for the better.