Nervous about seeing new neuro help!!

[IUMOM2]

OK, so I'm scheduled to see my 7th neuro next month. It's at an MS clinic in Indianapolis. I've heard good things about it.( It's the Indiana Center for Multiple Sclerosis (Dr Kolar runs it). Has anyone heard anything about it.)  But, I'd also heard good things about the last place I went, and I didn't have a very good experience.

Part of me just wants to give up on getting a diagnosis. I just don't think I can handle it emotionally if I get dismissed. My logical self says that with all of my tests results (see my timeline for background info)  I should get a dx now, but my emotional (burned) self says there are no guarantees.

I guess if I at least have someone willing to follow me that will be better than nothing. I received the packet in the mail from the MS clinic today and all of the info they want is so overwhelming to me. I don't know why it is, I have most of it here at home.

I have to get records from my last three office visits with my PCP, and I think I'm afraid to do that. My last two visits with him have been in the late afternoon, when I've been at my worst...in a lot of pain, and purely exhausted. At my last visit he alluded to the fact that maybe I was depressed. I assured him that I wasn't...just in pain. I'm afraid he has something in my records that says I'm depressed. Not that there would be anything wrong with that if it were true. One thing in my favor was the neuropsych testing that I had done which showed I had true deficits and only a slight amount of situational depression.

I guess I just need some encouragement. I know I haven't been here long and you all don't know me well, but I also know that this is a small, caring group of people many who have been through, or are going through what I'm going through.

TIA for any help.

[IUMOM2]

I agree with what you are saying. I think the first neuro was turned off by the fact that I mentioned MS. But, it was the ER doc who put that in to my head when I ended up there for my first attack.

I have had more than the two episodes and in more than one area of the CNS. Hopefully, this next guy will see that from exam and positive test results I will bring to the appointment.

I appreciate you "talking" with me about this. I'm a little bit calmer now than when I first posted. I had just found out that Rehab hospital wanted to cancel my cognitive rehab appointments until they heard from my insurance company. My insurance company has said they will cover the retaining. It's frustrating waiting to start the therapy.

Thanks again.

[JonM]

Its OK... I can only say to be concise with the Docs, don't ramble with them, they will turn you off quickIf its one thing I've learned about these specialists is that they do not like the patient to come in looking for a certain DX or have their condition somewhat figured out.  Now I know we all do that, but we kinda have to hold it in check and let the MD feel they're figuring it out without us leading them to it with a lead rope.  See if one (or next one) that says that at least you had a Clinically Isolated Episode (CIS) will put you on disease modifying drugs (DMD).  Use to be you had to have two seperate episodes before they would consider diagnosing you,  Now that the protocol has changed, they should put U on DMD for a CIS.  Which means alot of people shouldn't have to wait for a second episode.  If they don't ,ask why their hesitating and what the risks are if they're wrong.

Jon

[IUMOM2]

My city is not that small 2-300,000, but we only have about 8 neuros and most of them are in one practice.

I had MRI's every six -8 months for several years. Even though the MRI's have been stable I've continued to develop more symptoms, and signs plus other positive tests.

The neuropsych I saw said he was very surprised I wasn't on a disease modifying drug. I'm just taking sx meds at this time.

It's all so frustrating to me. I am not a difficult person/patient. Most of my other doctors I've had long term, and I do what they tell me to do.

Anyway, that's what's going on. I think I lost all faith in the neuros when #5 refused to see me when I had a bedwetting episode, and later bowel incontinence. He said he'd referred me and couldn't see me anymore!?

OK, I'll be quiet now. Sorry for the rambling.

[JonM]

I assume you must live out in a small town or the country, that's too bad that expert medical help is so far away.  You must have had several MRIs to come to a conclusion you are stable,  Did you take medicine during this time?

[IUMOM2]

neuro 1  neg LP means no MS wouldn't see me back
#2 MS specialist no longer accepted by insurance
#3 my sx caused by hyperventilation, anxiety (they're not)...no tests
#4 looks like MS, but not enough for dx you need to find someone from home town to treat you (I'm trying)
#5 I think you have a neuromuscular disease sends me to NMD doc. NMD says I think you have MS, not neuromuscular disease the most important thing is for you to be followed over time (I've tried)
#7 (sorry I miscounted I guess I'll be seeing #8) Because my MRI is stable over a two year period (still only four lesion) will not dx, looks like MS says if he would have seen me two years ago may have started me on treatment. Since I'd had abnormalities on neuropsych testing wanted that repeated, also had abnormal urodynamics tests wanted that repeated too. (both reveal abnormal results) Wanted me to go back after tests were done, but it is a seven hour drive and due to my husbands job changing can't go that far now.

Sorry not brief...guess I needed to get it out.

[JonM]

Why 7 Neuros?  Short answer please.