Hospital change and unknown Neurologist
August 14, 2015 at 1:56 am
I have just recently been informed that I have to move hospitals to receive my Ivig. I have infusions every fortnight. My diagnosis was a long time coming and I thank God that I found a Neurologist who knows his stuff. I fronted up to the new hospital and came face to face with ANOTHER Neurologist. I didn’t like him from the moment he opened his mouth. After a barrage of questions and a half hearted physical examination he tried to impress his two students in tow by stating that I needed new blood tests, more MRI scans another lumbar puncture and another nerve conduction study. I asked him was he doubting my diagnosis and he said I could have 100 other conditions and he would not ok my infusions without the tests. I refused and said I would not do ANYTHING without talking to my OWN NEUROLOGIST that has been taking care of me since 2009.This twit was trying to take over my case. I am livid. Now I won’t go back to that hospital EVER and I have decided that I will no longer receive Ivig no matter what this goose says. I will NOT take any notice of some twerp who thinks he is a God and wants to prove that my diagnosis is incorrect. I have had minimal improvement with Ivig anyway so I don’t think I will miss it. I may get more tired than usual but that would be about it. How rude is this neurologist trying to take over from my chosen Neurologist? Has anyone else has this problem? If so, what happened? I am digging in my heels here. I don’t see my own Neurologist for another 3 weeks but he will receive my story and won’t be impressed. I don’t WANT more tests. I have my diagnosis and how dare this upstart try and take over my care!
August 14, 2015 at 11:33 am
Sorry to hear about this trouble. Depending on the out of pocket costs to you, getting another ‘opinion’ is a good idea.
No, it is not unusual at all for different doctors to run all new tests. It happened to me everywhere I went. And, I went to multiple major medical centers where, yes, they always ran ‘new’ tests.
Further, in two instances the Chief Neurologists disagreed over the proper diagnosis for identical findings.
Please do not knee-jerk react and quit IVIG. IVIG is one of the primary treatments for CIDP. It is possible to have ‘weird’ variants of CIDP. In some cases the disease does spontaneously go into remission, meaning you will probably feel better. However, relapsing-remitting and just plain old goes on and on variants also exist.
Please do not discard the benefit proper treatment will give you.
In the USA if a doctor does not have ‘privileges’ at a Hospital they are usually not allowed to practice there.
Further, there are have been some cases in the history of this site where the original CIDP diagnosis was later found to not be accurate.
Don’t make the mistake of putting any one doctor up on a pedestal or holding onto a single diagnosis for dear life. After all, the doctor you respect may be wrong.
August 14, 2015 at 6:29 pm
Thank you for your reply and I do really understand all that you have said. I did miss off my post that the hospital I am now expected to attend is the SAME Hospital I originally attended and the then Neurologist who messed me around for three years, accused me of being a “drunk” with questions like “How big is the glass?” smart alec comments, is head of the same Neurology unit. This so called “Professor” thought I was making up my symptoms and dismissed me with not even a physical examination at one visit except for him saying walk towards me. He looked up for two seconds then continued scribbling. Maybe he was doodling! The last appointment I went to of his was disgraceful. His eyes hardly left the page he was writing on. He had a student with him and he took no notice when I said my symptoms were getting worse. He again referred to my “alcohol consumption” with the same disrespect he has shown me all along.(I occasionally have a glass of red which I sip” I would have a glass maybe once every two months.) He also didn’t correspond with my Doctor (GP) and he had placed me on Tegretol and she knew nothing about it until I ran out of tablets. This particular Neurologist is dangerous and if I continue to see the new Neurologist the “Professor” of nothing will become involved with my case. I don’t want him anywhere near me. This new bloke has all the Professor’s” notes right there in front of him. I know I am not wrong about the negative vibes I received by this other new Neurologist. I don’t like him, I will never see him or respect him as my Neurologist as I already have the best one available in the State I live in. I am in Australia. I am on a pension and a public patient with no insurance so I have no choice as to where I go. My own Neurologist can run any test he wants but I am not going to get involved with conflicting diagnoses as this new one is hell bent on proving my own Neurologist wrong. Yes my Neurologist IS on a pedestal and anyone who has been seen by him with long stories of stress and frustration over getting a diagnosis or treatment by other Neurologists, not just CIDP either, have gone to him and have had a proper diagnosis given to them for their disease. I have corresponded with many other patients who were at the end of their rope with Neurologists who couldn’t find out what was wrong and just left these patients crying with despair. My Neurologist is particularly brilliant at difficult cases and has done some amazing research into CIDP. He is a fully trusted physician and everyone I have spoken to who has been treated by him has nothing but the utmost trust and respect for him. I have been receiving Ivig since 2009 with little to no improvement. It is a very long time to be on this treatment and I have been questioning for some time whether or not I wish to continue. I have that option always with my Neurologist as we discuss everything thoroughly together and he leaves a lot of the final decision making to me. Together we have tried a number of different options and every time my body has rejected the new medication. I am currently taking low dose prednisone which seems to be doing some good things. I have started to get back some reflexes in my knees. These have been absent since 2005. I have to state that my Neurologist is not wrong with my diagnosis and while I respect what you have said I have to stay true to what my intuition tells me and stick with the Neurologist who treats me like a human being and not like a number and a liar. Just recently I have had to put together all my history for an insurance claim and I compared the MRI results and the nerve conduction study results done by the “Professor” and my current Neurologist. Surprise surprise! BOTH MRI’s done at different hospitals had exactly the same result. Demylination! The nerve conduction studies were identical AND were both exactly the same! Both showed evidence of demylination! I have decided that I am happy to go without Ivig. My veins are now very scarred anyway and they are having a lot of trouble canulating me, I have very tiny veins which blow easily. I don’t want a port either as this would tie me to the hospital where the ogre resides. I am also nearly 60 years old and honestly, the thought of having Ivig for the rest of my days is just so not worth it. I react badly to it, I get dreadful headaches that last for days and have had other reactions like continuous nausea and vomiting, extreme stomach cramps that go on for days etc etc. If I have not made very much improvement when I see my guy in the next three weeks then I think there won’t be a problem dropping Ivig. He will NEVER convince me to go back to my local hospital. I don’t want the original Neurologist anywhere near me. I should have sued him for his unprofessional behaviour and lack of respect! The delay in receiving Ivig when the diagnosis was right under his nose has cost me my health. As you would know the sooner you have a diagnosis the more likely you are to get improvement and even be cured. Three years of nothing has cost me that possibility. I will never be cured and will have this for the rest of my life. I will just continue to see my long time Neurologist in his rooms as I have done from the start. I am at the end of my life now and I can’t see a reason to continue torturing myself every fortnight and then go to bed for three days afterwards with severe headaches and stomach pain that can put me in hospital, continuous nausea and vomiting even though I have medication for this, then front up again for more of the same. I again thank you very much for your reply and I do understand and respect what you are saying. I have to stay true to myself however and trust my inner voice which tells me to avoid the local hospital’s Neurology department at all costs. Before I went to the hospital I did a search to see if the Professor was still involved and before I found it I came across a “rate your Doctor” website. His name popped up! The first one said “This doc looks like RIMMER from Red Dwarf and has the knowledge and bedside manner of a house brick…” Another said “Too busy to focus on patients properly. Often only see associate rather then doctor himself” He already has a bad reputation and he should not be allowed to treat any patients. He is also not interested in anyone who doesn’t have MS which is his main interest. I know I am coming across as very one sided but I do have my reasons. I did see one other Neurologist who wasn’t interested in giving me a second opinion and stated it was too difficult to come to any conclusion. If I had not searched for my current guy I would still be climbing the walls and crying myself to sleep. I will let you know what my Neurologist says about what has occured. Thanks again to you.
August 14, 2015 at 10:07 pm
Please let us know your location so we can provide you with some alternative health care suggestions. You may need the services of an expert in the field to bring your treatment back on course and take it out of the hands of the “professor”.
August 15, 2015 at 3:03 am
Trueblue, I’m in Australia and I have a few contacts in different states. I’m on the Sunshine Coast and being treated by a Neurologist in Brisbane, and receive infusions in a really top clinic in Buderim. I can relate to much of what you are saying, except for the IVIG. I believe it has stopped the progression of the disease. There is no cure, but there can be remission and due to the remitting and relapsing nature of the disease I have had a couple of tastes of partial remission, and I believe I could live with that and have a useful and independent life if the partial remissions become permanent.
I agree, there is certainly no point in continuing with a neurologist who you don’t trust.
Your IVIG intolerance problem may be simply related to infusion rate, or even something as simple as hydration or pre-medication.
You do need to make contact with some group closer to home to share information re neurologists and treatments.
August 21, 2015 at 11:10 pm
Well at least your not being treated by the Veterans Administration. I had symptoms for more years than I can remember. Finally a GP I was working with sent me to a neroulogst. More testing and he says I have CIDP. And now more testing. I have to wait months between testing because the VA is the VA (Very Awfully) I wonder how long it takes to coin that phase.
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