Confused, Need advice

Patti, where are you located in Texas? I’m amazed that this guy ever graduated from medical school, not to mention his completing the residency requirements for neurology.

Let us know where you’re located. We can assist you in finding a neurologist that has some experience with CIDP and, perhaps, even someone who specializes in that area. I go to a neurologist in Houston who specializes in CIDP, MS, GBS, ALS, etc.

Patti,

The first Neurologist I was sent to told me after many tests he was 99% sure I had Myathenias Gravis. He was waiting for one more lab test to confirm. When the tests did not confirm he said he did not know what I had. He did say there was another Neurologist in the DFW metroplex I might see but it was very difficult to get in.

The second Neurologist was Dr. Alan Martin with Texas Neurology. He is located at 6301 Gaston Ave, Dallas 214 827-3610. He diagnosed me with CIDP. I was amazed that the first Neurologist did not have a clue!

Also, there is gentleman posting on the forum “lostingotham” who is also in Dallas that is seeing a doctor at Presbyterian Hospital and he gives the doctor’s name and # on a thread he started–look up lostingotham on the Member list.

I see you are from Texas but I do not know where exactly. There is another gentleman from Houston that posts on this forum. I believe his name is Gary. I am sure he would share the name of his doctor.

Again, it is still hard for me to understand how a neurologist would not know something about CIDP but I guess they all do not.

Donna
McKinney, TX

Patti,

I am so sorry.

I would highly recommend Dr. Alan Martin in Dallas. It took me a month to get in to see him, but I do like him and have a great deal of trust. I did have to have the MRIs and a Lumbar Pucture to substaniate the diagnosis and the IVIG treatment. Then it took a month for the Insurance approval. It is my understanding that my response to the IVIG is part of the confirmation of the diagnosis.

Again, I would see another doctor, one that specializes in GBS-CIDP. I know you are discouraged, but it seems not every neurologist is really knowledgeable in this arena and the appropriate treatments.

Donna

You mite want to take a look at your neuro’s credentials? What does he specialize in? To me, it sounds as if his learning STOPPED once he went into practice and that he is NOT Listening to YOU!
Think of it this way? Second opinions are CHEAP! Finding good doctors is not?
Worth the checking around and finding a good doc that is a good ‘fit’ to you and your issues.

Web up ‘CIDP Info’ and look at the ‘diagnosis’ tab on that site. Things regarding diagnosis standards have changed in the last few years and that should help you a lot. This web site was not put together by some fringe element – it was put together as a result of many international conferences among neurologists who really care about those of us with CIDP.

Should you try to make an appointment w/another neuro and the wait time is long? Ask if you can be on a ‘cancellation’ list. It can really help! If you can be there on short notice. [Like a day or two?]
In the meantime? Ask for and GET copies of all your test results ‘for your records’ and then have copies of those [keep your own set!] for any new opinion you encounter. Some tests, actually most tests a new doctor will want to have done by his own people at/to his own standards. Docs are fussy this way. Besides, results can vary according to the equipments they are done with.

Don’t be shy to ask questions! Refuse being put off and GET ANSWERS! Having had cancer issues as well? Well – let me tell you those docs don’t put you off at all! Why should neuros? Doesn’t make sense to me at all, at all!

Hope this helps to some bit.

i have GBS but also have nerve damage in my legs i live in charlotte NC.was doing pt. at first trying to walk without my AFOs. Now that we know the extent of the damage that is no longer an issue. seems the afos are permanent. I have been discharged from pt. starting a program at the Y.I know how frustrating drs can be they kept telling me my symptoms were in my head. they even stood me up on the side of the bed and let me fall to the floor. Once that happened it dawned on them there must be something wrong.
Amy

Hi Patti! Bless your heart! I’ve been in your shoes and I know how frustrating it can be. The town i live in too is worthless for doctors! Patti! I suffered just like you. My best suggestion is seeing a doctor that specializes in CIDP. Not sure where you live but I would ask my doctor to refer me to the best that he knows is around even if it means traveling. That is what I ended up having to do and finally got an answer! Good luck my friend! Good luck and cyber hugs heading your way!

Patti,

In every profession there are specialists, even in neurology. I had a dumb— once, and I had a couple who didn’t know what they were doing, CIDP-wise. I also had one, who said the majic words, I DON’T KNOW, and sent me to a facility that would figure it out. If I had treatment earlier, I might not be where I am today, but that is water under the bridge.

The point is, You need to take care of YOU !!! Some Dr.s are kind and helpful, and others are all knowing Gods. I prefer the former. You are absolutely right to look elsewhere.

If you end up with a CIDP diagnosis, it will be a long haul. There is no single test for CIDP. It seems to be the one left over after everything else is crossed out. The EMG should cross out quite a few things. If your damage is demyelinating then you are still in the runing. I am sure they did hundreds of blood tests to rule out diabetes, heavy metals, vitamin def. etc. You should get copies of your test results for your file. Then the next one you see won’t have to repeat everything.

It sounds like you have challenging symptoms. When a Dr. compares your situation to anyone else, and then minimizes it to the point of belittling you, I have no use for them. They should know better !!

If it is indeed CIDP, there will be the possibility of immunosuppression therapy ALL THE TIME. Not just during an attack. Truem you need to be very aggressive during a relapse, preferrably before the relapse, but if there is some immunosuppression therapy in between relapses, they should be less severe.

Anyhow, it sounds like you need to find a qualified, caring neuro who will help you.

Good luck !!

Hi, Patti;

Please get a second opinion from one of the great doctors others have recommended here. I’m sure your husband will be happy to drive a few hours each way if it means that you both will really know what you have and how to deal with it.

CIDP stands for chronic inflammatory demyelinating polyneuropathy. Perhaps your current doctor doesn’t understand the chronic and the demyelinating part. But if you do have CIDP, and you’re re- and de-myelinating, treatment will help.

Meanwhile, go to the PT. Nerves CAN regenerate, and the PT may be able to tell you how to do some things to reduce your pain. Sometimes they have massage therapists at the PT offices–at least try to get an insurance-paid massage!

Are you taking extra vitamin B? I find that helps my nerve pain alot. And ask your doctor if Neurontin might be good for you.

This is hard, I know. I live in NYC and it still took me months before I found the right doctor.

-Marie

Patti,

I’m so sorry for the experience you’ve had with your doctor. I didn’t discover this site until after my diagnosis and after I located a great neurologist. I wish I had found this site sooner because it wasn’t until the 3rd neurologist I saw that I was treated.

It is frustrating to be treated in that manner by the person you are hoping to help make things better. I can recall being in tears myself a few times. But right now there are some good points. You have educated yourself about your condition. (Unfortunately more than your doctor) And that is so important. Becoming familiar with treatments and how this disease works is critical in knowing how to adapt. You also have the support of everyone here. And that is a wonderful thing.

I’m in Maryland, so I can’t offer you any referrals, but you and your husband are in my prayers.

Angela

I am so sorry to hear you have been brushed off. How does he know there is no more damage occuring ? Some people have a very slow progressive disease that it takes months sometimes to notice worsening. I am one of those patients. I realllllllly hope you can find another dr that will take his or her time with you b/c more than likely you need treatment. If you are so weak and cannot do therapy…that’s just nuts. Yes, we all need to build endurance and strength, but I dont understand. And then to order another MRI when you’ve already had it. This dr very obviously is not taking his time with you. This disease is a bit more complicated than that.

Please go to another dr and dont stop until someone listens to YOU. I know it can be hard to travel, but in the end, it will have to be worth it. It couldnt get any worse, right ? Well, actually, it really could.

Best of luck

well wishes,

Stacey

one more thing…the lunesta. My pain mgmt dr gave me samples of lunesta. You might ask next time if they have any samples. Doesnt hurt to ask.

Stacey

You can easily get a doctor’s name from the GBS-CIDP Foundation. I’ve done that to confirm my diognosis.

Best Regards,
Lori

[QUOTE=Patti]Dallas is our next option but with traffic you are talking a couple of hours each way. It makes it hard on my husband who always has to take off work. [/QUOTE]

Patti

DO IT ANYWAY – I felt like I was reading my own story at first…what with the “we can’t help you” attitude to the rushing out the door. Persist in finding a neurologist knowledgable in GBS/CIDP and you will never experience those tears of frustration and anger again. At least not about the doctor. We drive two and a half hours to Baltimore to see my doc at Hopkins, my husband has to take at least half a day off of work and my appts. are always Friday afternoon, the only time my doc has clinical work. I feel guilty every time I use up half of one of his vacation days but it is WORTH it to get a proper diagnosis and treatment. I don’t know where I would be today if we hadn’t ended up at Hopkins making that long drive every time, probably dead from frustration induced suicide.

Dealing with the guilt of dragging your husband out of work is one thing but the vacation is something else. Many companies offer short-term disability (STD) for the caregivers of disabled people. If you cannot drive, as I cannot, your husband may be eligible for disability leave to drive you to your appts. and so would not have to use up his vacation to do that. Its worth checking into, the human resources dept should be able to give him some info on that. If they give him a blank stare tell him to ask for the personnel policy manual and/or leave policy, it should be in there even if they don’t call it STD. Besides, I’m sure he will get a chuckle or two walking into the HR office and asking if they have any info on STD. 😀

Make the drive, make the time, make the commitment to your recovery.

Julie

Hi Patti,

It sounds to me as if you are convinced you want to see a second neurologist but getting the insurance company approval for a second opinion is the problem.

If you have a doctor referral for a second opinion would the insurance approve that? I thought insurance companies had to allow you a second opinion. If they tell you no, I would call the HR department for your husband’s company and get a clarification. There has to be a way to get a second opinion.

Patti, I only live about 30 minutes from you. If you would want to meet for coffee, I would be glad to drive to Sherman. I do not want you to give up and just accept this as a way of life. I have made a lot of progress in the past six months of receiving IGIV. Although a long way from normal, I am now very functional. I want you to feel as if you are getting better too.

Donna M

Sounds like you definitely need a new doctor. I’ve been very impressed with mine, Dr. Zaid Blaik, in Dallas. I saw him for the first time in September and he immediately started an aggressive battery of tests which allowed him to arrive at a diagnosis within about two weeks (and it only took that long because the DNA sequencing for congenital nerve disorders couldn’t be rushed). He got me on IVIG right away, discussed the pros and cons of steroids in detail, and encouraged me to learn as much as I can wherever I can. Since then he’s been very open to adjusting my dosage and doing additional testing at my prompting based on my research, and he had no problem working with me to find a different treatment when the meds he prescribed for neuropathic pain weren’t doing the trick. On top of all that, he encouraged me to seek a second opinion (which I did, and which confirmed his diagnosis). Best still, I’ve been able to schedule appointments with him on very short notice (once same day) when I had a serious issue.

Keep in mind that CIDP is a very rare disease. You need a doc who has experience with it, and such a thing may not exist in Sherman. My experience with IVIG has mirrored donnam’s–it has given me dramatic improvement. I was barely able to walk with a cane before I started, and now I’m almost completely symptom-free. Even my athelete’s foot is back as of last weekend. I was cursing the fact that my feet were suddenly itching when I realized, “Hey! I can feel my feet itching!” Somehow it wasn’t so annoying after that.

Hang in there and don’t give up. This stuff is definitely beatable and there’s no reason to let a doctor who doesn’t know what he’s doing take your life away.

For what it’s worth, I’ve found that Dextromethorphan, which is the active ingredient in Dayquil, is extremely effective for neuropathic pain. I wouldn’t overdo it, but if you’re in a pinch it might help.

oh, please dont give up. I think it’s so cool for Donna to offer to drive you. I know I would if I lived closer. I hope you’ll give it a chance.

Julie has a great idea about the disability to care for a loved one. Here, it is called FMLA. family medical leave act…it’s the law that they have to allow you the time off to care for a loved one. Each co is different as to how many hours they allow paid.

So many of us know the frustation. It’s ok to be frustrated.

well wishes,
Stacey

I wish you my best and hope that you have the answers you need to get that help. Very frustrating indeed for many of us. Will keep you in my prayers!
Hugs
Linda H