Confused, Need advice
AnonymousNovember 7, 2008 at 7:57 pm
I saw the neurologist again today. He told me that I have nerve damage. He only checked me from my knees down on the EMG. So then he just tells me that it appears the nerve damage is done and doesn’t see that it’s continuing. It took me almost 7 years to get to the point of anyone coming close to telling me what was wrong with me.
I was asking what we were going to do and he said nothing except PT. My husband spoke up telling him I had severe fatigue, numbness, pain and weakness in my legs, I fall unless I hold onto to something. The Dr. shrugged it off and said I needed to be reconditioned.
I told him I thought that maybe there was a treatment. The Dr. told me a couple of weeks ago to do research on CIDP, he said look it up online. I did and found this place. I told him all I’d read and learned. So….his response today was he hates patients reading about treatments online! 😮 He said the treatments for CIDP are only for patients during flairs.
My husband was more upset than me I think. He has lived with this as much as I have and battled to find help.
I left and went to the car, my husband was paying and they hand him a paper for PT and he told them there was no way I could handle that. The neurologist told his nurse to schedule an MRI for me. My husband said she already one, my wife has ask you 3 times if you got the results.
I am so confused tonight and I have sat and cried a river since getting home.
AnonymousNovember 7, 2008 at 9:08 pm
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.
AnonymousNovember 7, 2008 at 9:15 pm
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.
AnonymousNovember 7, 2008 at 11:10 pm
I’m seeing Dr. Stafford Conway in Denison, Texas which is where I live. It’s next to Sherman, about 30-45 minutes depending on traffic from McKinney.
The last visit I had with him he seemed so caring, today he seemed to want to rush me out the door without listening. I guess since it was Friday evening and I was the last patient he was in a hurry to go home.
Not sure if I mentioned this before but the last Dr. I saw was an infectious Disease Dr. She told me I tested positive for Epstein-Barr. I figured that was causing everything but she said no, it didn’t cause my numbness in feet and weakness in my legs. She sent me to see the Neurologist. He told me I wasn’t sick due to the Epstein-Barr. He said everyone test positive for it.
He did the EMG and said I had nerve damage. He told while he was doing it ‘yours isn’t as bad as an elderly person I saw.’ My friend told me it was very unpleasant but honestly, I didn’t feel the needles except once my knee had a lot of pain and he said he may have hit a nerve.
BTW, we stopped to get my refill on Lunesta this evening and were told our insurance (BCBS) has refused to allow me to continue it unless we want to pay 160.00 per month on our own. We paid 45.00 as a co-pay previously. I only got it for 3 months. I was getting no sleep till I started it. My regular MD prescribed it. I’m going to call Monday and see what he can do. I know it doesn’t sound like much but between my husband’s meds and my few it adds up.
I feel so bad complaining on here. I know I’m rambling on but I’m trying to add any information that may be important. It got to a point during my years of going from Dr. to Dr. that I’d get so frustrated. The last few Dr’s I saw I sat and cried so they decided I was just depressed. I even sunk so low as to tell one he was my last hope. I think I just got to a point I was giving up and somewhat angry that nobody took me seriously.
Thank you for listening.
AnonymousNovember 8, 2008 at 12:21 am
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.
AnonymousNovember 8, 2008 at 5:42 pm
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.
AnonymousNovember 8, 2008 at 8:51 pm
He said it looks like the nerve damage is done and doesn’t see that it’s continuing. I have no idea [B]if treatment needed[/B] or if it’s something that could happen again. I wanted to know how he can tell it’s not happening now and I had so many other questions but he was in a hurry and I was escorted out. I was still trying to talk when he turned and walked away.
I did manage to say what do we do about it and he said nothing except some PT.
I just got the feeling (from the way he acted) that I’m over it and have to learn to deal with the nerve damage that has happened. Can you tell I’m confused? I cried all the way home and my husband was just angry.
This isn’t a big city which means fewer Doctor’s.
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.
I think in every field of medicine there are Dr’s who are better than others in different area’s. I also think some have lost touch with patients and need to learn to listen and have some compassion.
AnonymousNovember 8, 2008 at 9:30 pm
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.
AnonymousNovember 9, 2008 at 1:00 am
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!
AnonymousNovember 13, 2008 at 7:57 pm
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 !!
AnonymousNovember 14, 2008 at 1:46 pm
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.
AnonymousNovember 14, 2008 at 2:17 pm
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.
AnonymousNovember 14, 2008 at 3:14 pm
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
November 14, 2008 at 3:29 pm
You can easily get a doctor’s name from the GBS-CIDP Foundation. I’ve done that to confirm my diognosis.
AnonymousNovember 15, 2008 at 1:40 am
I tried to get an appointment with another neurologist. I discovered I need to be referred to see that type of Dr. and apparently my insurance doesn’t think I need to see more than one. I was on the phone quite a bit this week and finally gave up. I’ve been ill almost 7 years. I have fought for so long, I don’t have any fight left in me. I know the insurance companies and Dr’s could care less.
Thank you all for the kind words and advice. May God Bless each of you.
AnonymousNovember 15, 2008 at 4:54 am
[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]
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.
AnonymousNovember 15, 2008 at 5:29 pm
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.
AnonymousNovember 17, 2008 at 3:25 pm
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.
AnonymousNovember 17, 2008 at 3:33 pm
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.
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