Looking for CIDP doctor
AnonymousSeptember 4, 2009 at 2:11 pm
This is my first thread. I have read a lot of posts and answered a couple. I need your input as to where is the best place to go for diagnostics? My neuro is working to get me scheduled into Mayo Rochester clinic. Is this the best for getting to the bottom of things or is Johns Hopkins, or Cleveland Clinic? Or any other suggestions! I have been declining steadily over the past 4 years and am ready for the big guns!
I am getting ready for my 3rd month of Solumedrol 250 mg. for 2 days in a row once a month. The results are that my breathing is better almost immediately. 😀 Then for about 3-4 days, I feel really bad and the nerve pain intensifies. 🙁 Then for about 2 weeks I feel pretty decent. :rolleyes: And then the week before time for the steroids, I feel so fatigued I can hardly go. :confused: So, I have a love/hate relationship with the steroids.
I have not yet had the nerve biopsy. My neuro decided to wait and let Mayo do any further testing. I want better doctors and I am concerned that if I go to all the expense of going someplace else and still end up with “we don’t know what is wrong with you” I will feel like giving up.
The MRI, bloodwork, LP, all came back normal. The EMG shows I have no reaction in one foot and leg to the knee and diminished in the other. The perineal nerve is affected and the neuro says I am autonomic symptoms. I went to Shands in Gainesville, FL. which is the USF Med center and the neuro there said he was not sure but it could be transverse mylenitis. My neuro sent me for a contrast MRI and there is no sign of this in my spinal cord. So back to square one. I have been in a holding pattern for about a year and now my neuro wants better diagnostic opportunities for me. He admits he does not know what is wrong with me.
So…back to my question. I live in the Tampa FL. area. Where are the CIDP, neuro doctors/gurus from here that even know what CIDP means.
I am not willing to wait and let my illness progress so the doctors here can finally diagnose me.
I feel like I know some of you because I usually read the new posts on my lunch hour every day.
Thanks for any suggestions you can offer.
AnonymousSeptember 4, 2009 at 2:27 pm
[B][FONT=”Georgia”][SIZE=”2″][COLOR=”Sienna”]Your closest might be the Neurologic Institute in conjunction with Methodist Hospital in Houston, TX. Excellent diagnostician as head of the Institute, Dr. Appel. He will come into your room with an army of med students and residents. But this isn’t “House”. He is an absolute delight and the atmosphere is so great that there are lots of grins and chuckles along with all the diagnostic work. Can’t beat that !!
I landed there because my Johns Hopkins trained neuro considers Dr. Appel her “guru”. Appel is affiliated with Columbia/Weiss back East. I don’t know how that works.
Methodist Hospital is probably “the” hospital in Houston. Remember DeBakey? The Bushes always seem to land there. The med students and rezzes I spoke of are from Baylor Medical Center/School.
I think, unless I was going to the original Mayo in Rochester, Minn., I would opt for Houston, or, perhaps, the Neurologic Institute in Phoenix, AZ. I’ve not had first-hand info about Cleveland Clinic. [/COLOR][/SIZE][/FONT] [/B]
AnonymousSeptember 5, 2009 at 2:05 am
I too live in Tampa, Fl. Was diagnosed on June 26 this year with cidp after 7 years and after changing doctors several times.I finally found a Dr. that was aggressive enough to find what was wrong. All test came back normal.I had the nerve biopsy done. That came back with diagnosis of cidp.My Dr`s name is Dr Wilson on Swann. If you do get the nerve biopsy I highly reccomend Dr Tyler on Audabon right off of Swann. I get IVig every 3 weeks and my home nurse(He owns the infusion company) also speaks very highly of Dr. Gooch.He calls him the Guru of cidp.
AnonymousSeptember 5, 2009 at 8:07 am
After reading the responses to my request for a CIDP diagnostic doctor this morning, I finally feel like I have some options! Thank you so much!
I plan to contact my neuro on Tuesday and see if he can refer me to Dr. Gooch at USF. One of my 2 sons that have MS goes to USF and sees an excellent doctor there, Dr. Stanley Khrolchek (not sure of the spelling). He specializes in MS and Fibromyalgia.
If seeing Dr. Gooch is not an option, I will see if I can be referred to Dr. Wilson. I know I need to have the nerve biopsy to get the true diagnosis. I just want to have it done right and read accurately. My neuro said the doctor he uses will send it to Mayo to be read.
If I can get good medical care near my home I will be thrilled! If I have to go to Rochester to get it, I am willing to do that. I am so tired of getting sicker and more disabled and feeling like my doctors are not even familiar with my problems.
The only diagnosis the neuro is willing to give me is idiopathic neuropathy. I read somewhere that when you get that diagnosis it is time to find a doctor who is willing to dig a little deeper and find out what is really causing the problems. He has me on the Solumedrol to see if I have a positive response. If I do, it will tell him I most likely have an autoimmune disorder.
I am more frightened by my problem breathing than the pain, fatigue and lack of feeling in my legs and arms!:eek: I have been through all the pulmonary tests and there is no problem according to the doctor. BUT…if I exert at all, I am huffing and puffing. I also feel like I have someone sitting on my chest most of the time.
I have learned so much by reading the posts here daily for probably 6 months now. It is so comforting to know you are not alone. One doctor called my symptoms “bizarre”, then I read on here that others have numb lips and tongues, feeling like cold water is being poured down your leg, unexplained breathing problems, etc.
Thank you for sharing,
AnonymousSeptember 7, 2009 at 10:39 pm
If you are able to travel Dr. Lopate at Barnes Jewish Hospital in St. Louis has been wonderful, I had gotten to the point that I was virtually paralyzed from the neck down and none of the other Dr’s I went too either seemed to have a clue or care, I finally had my wife take me to the ER and literally poured myself out of the car into a wheelchair, was admitted that day had a tentative dx. that night and a firm dx and had started treatment within just a couple days.
AnonymousSeptember 9, 2009 at 11:31 am
Since you are looking for a doctor, and others are providing names, let me provide you with one more. My doctor, Dr. David Cornblath, at Johns Hopkins, is one of the foremost researchers on CIDP in the country. As such, he is on the cutting edge of both diagnosis and treatment, and has been fabulous as my doctor. I highly recommend him.
AnonymousSeptember 9, 2009 at 1:25 pm
[QUOTE=ajgeb]Since you are looking for a doctor, and others are providing names, let me provide you with one more. My doctor, Dr. David Cornblath, at Johns Hopkins, is one of the foremost researchers on CIDP in the country. As such, he is on the cutting edge of both diagnosis and treatment, and has been fabulous as my doctor. I highly recommend him.[/QUOTE]
[B][FONT=”Georgia”][COLOR=”Sienna”][SIZE=”2″]Agreed, [U]absolutely[/U] [U]agreed[/U]!! If I was anywhere near Johns Hopkins I would be there in a flash. As is my neuro here did her residency and fellowship there. And that was the reason I chose her … and I’ve not been one bit disappointed. She’s not afraid to send her patients for second opinion, either, which is very much appreciated by me.[/SIZE][/COLOR][/FONT][/B]
AnonymousSeptember 9, 2009 at 3:22 pm
I called my neuro yesterday morning and asked for him to refer me to USF in Tampa first and not to proceed with the Mayo Clinic referral yet. If I can get into USF in the near future, it would be so much easier for me than traveling to MN. this time of year! Also, I would not have anyone to make the trip with me. My 2 sons that live in FL. both have MS and their wives who look after them also work outside the home.
I still work because of the need for insurance. I am a State of FL. Senior Vocational Rehabilitation Counselor so at least I sit behind a desk:p
I had my second Solumedrol 250 infusion for the month this morning. It REALLY helps my breathing and energy level, but I get increased nerve pain for a few days after the 2 day infusions. This is my 3rd month of getting the infusions so I can see a pattern starting to appear.
Was it the doctors from Johns Hopkin that gave the symposium in WA. state last year? I did not find out about it in time or I would have gone. That was when my neuro started to mention CIDP as apossible diagnosis.
Thanks again for the support!
September 11, 2009 at 2:01 pm
Sounds like you have some good local choices for a new doctor. Two of the neuros at the Chicago symposium last year recommeded Jonathan Glass at Emory Medical in Atlanta. He is their rare neuro disease go to guy. Also there is Dr Carol Koski at the University of Maryland medical center. She is on the GBS/CIDP medical board of advisors. Good luck
AnonymousSeptember 15, 2009 at 12:29 pm
I had the Solumedrol 250mg. for 2 days last week. I felt rough over the week end and yesterday my legs were rubbery and my spine and legs hurt really bad. Today I can hardly walk to the bathroom and when I get back to bed my legs and spine feel like they are on fire. I would fall if i did not have the walker.
Something different is happening and I don’t know what to do. I put a call in to my neuro this morning and have not heard back. What to do???
AnonymousSeptember 30, 2009 at 1:58 pm
Hi My Friends,
I am so angry and bummed out because I cannot get anyone to see me or listen to me. I finally got a call from USF as a result of my referral to Dr. Clifton Gooch. Well, after a small bit of my information, going through 2 sets of screeners, Dr. Gooch emailed the screener back and stated I should see one of his department doctors instead of him. He did not get to hear my information correctly and the doctor in his department does not have an appointment opening until mid-February 2010! I told the screener that I am losing my ability to walk and she put me on hold. She then came back and asked if she could call me back. That was yesterday morning and she did not call back.
I am going to call Janice Spector’s doctor in Tampa to see if I can get in to see him before FEBRUARY 2010!!
I am numb to mid thighs, my legs feel like I am walking on fence posts, my tail bone and buttocks area is numb and I am experiencing both bowel and bladder incontenence. The last 2 fingers on both hands, up the outsides of my arms to the shoulders tingle, feel numb, have shooting pains and I have a course tremor. I drop or spill everything I pick up. My legs are so weak that I would be afraid to try to walk without the walker. I have shortness of breath. I have numbness all around my mouth and tongue. Even the end of my nose feels numb. My vision gets blurry and my eyes run tears. And the doctors cannot diagnose me nor do they know how to treat me. I am in Solumedrol 250 two days in a row each month.
My neuro says he does not know what to do for me. He was the one that was ready to refer me to Mayo when I learned about Dr. Gooch. Now that is not looking good! He asked if I want to go into a rehab. A rehab for what? I need treatment and I am at a loss as to where to find help.
I take 350 mg. of Lyrica a day and wonder how much damage that is masking?
Sorry for the rant but I do not know what to do!! I thought I was a pretty good advocator but I am not getting anywhere with this!
Thanks for listening and any advise will be appreciated.
AnonymousSeptember 30, 2009 at 9:07 pm
You should call that screener back or call another neuro that was mentioned in an earlier post. or go to the ER. If you are losing your ability to walk and everything is going numb then the ER may be your only choice if you can’t get into see one of those nuero’s ASAP. stress to them what is going on and tell them you are desperate and scared. Have your current Neuro try to call and get the appt. sometimes they will get you in sooner if another doc calls and explains what is going on.
I am praying extra hard for you.
Rhonda (RyaN’S Mom)
AnonymousSeptember 30, 2009 at 11:42 pm
First off, I’m in an ‘insurance plan’ that will cover things better with their ‘preferred hospitals’. First off, I asked all my other docs? Including my dermatologist [YES I did, ask] which practices or ‘names’ they mite recommend. Honestly the dermatologist wasn’t a bad call as she was one of FIVE out of the nine docs I’d seen who threw out names and two practices stood out. Next, webbed up the US News Top Hospitals in the US and found that the docs in both of those two practices were listed in local publications as ‘TOP DOCS. Then I webbed the heck out of their names [docs, that is] to see what kind of ‘papers’ they’d written. Reading from a plethora of reliable info available on the net [such as Pub Med, etc.] I could get a ‘handle’ on how docs approached their diagnostics.
Once I zeroed in on two or three names? AND knowing that it can take ages to get that first appointment? I indicated that I could/Would be available ‘cancellations’ for any dignostic consultation appointments. To be honest? I took a practice nearest me. And The diagnostic process was agonizingly SLOW and cautious…So I called a TOP-rated neuro teaching hospital and took it further. Learning from all here that time CAN be a key issue in the long run. Well, not only did I get in w/a second ‘second opinion’? It was w/the head of the neuro dept! Boy did things roll on FAST then. I do believe I had every single test that could eliminate other neuro problems and all the MRI’s and Conduction studies right off the bat that one could ask for…and then some! [Including West Nile Virus which was a big issue here at the time] I’d indicated that I’d like the private practice neuro nearer me, and would he mind if I continued there after diagnosis? Neuro head said no problem. I was able to get most of the testing, MRI’s, Blood work, spinal workups [that went to MAYO BTW?] etc. done near by and I didn’t have to go to downtown driving by myself and wonder IF I could get home…especially after wandering dr offices halls in a teaching hospital. Soo by getting the second ‘second opinion’? I got the usually cautious process speeded up AND got to go to a more local neuro that I’d liked and now truly appreciate. That neuro head from the teaching hospital gave my guy the ‘ammo’ needed thru tests to try IVIG, which worked and still does for me.
There are two key things here….find out where your docs trained, and how papers on CIDP or other related issues are presented. Some are clinical and dry, others [even if group papers?] can give you a key to HOW DOCS THERE actually [B][I]THINK![/I][/B] Then, if your insurance allows you? Go get those second, third, or fourth opinions. Get copies of tests results if available-no demand them, tho many docs don’t trust some tests results ‘done’ by others.
Two years later? I was referred to another teaching hospital neuro head…who’d declared I could NOT have CIDP after two plus yeears, as I had walked in [tho, slowly and painfully?]! I merely replied, that I’d met 8 out of 10 tests to qualify for CIDP, AND didn’t he ever THINK that IF I’d NOT gotten IVIG when I had? I WOULD BE IN a wheelchair! Besides, I really didn’t and don’t want to have a sural biopsy! [IN this case? Politics and personalities came into play] That’s what I mean by researching out that neuro programs’ papers and attitudes to US. Besides, some insurance companies feel now it is outdated if most of the other diagnostic ‘indicators’ say try therapies. Biopsies can and do cause a higher risk of many more infections then they had when first conceived. Thus they are considered a very last resort – so beware of any docs eager to do one!
One other good thing about second or more opinions? You get a chance to ‘interview’ docs.
Lastly, don’t necessarily wait to get the top brass-to be honest? I got to see two of them almost by ‘accidents of luck’ [referral on one, cancellation the other]. You have to realize that any doc working under these guys is gonna be SUPERVISED and that they will consult with that Big Guy. Get things [tests etc…] rolling and go from there! You get seen faster? And get what you should be getting not only faster, but, better! And, as I stated, I got nearly all testing things done really close to home and didn’t have to go into ‘town’. Soo much easier when you get tired easily, for sure.
The worst part? Waiting for all the blood work and spinal work sent to Mayo [and I DIDN’T have to go there, even] to come back from testing- that was an angonizing bunch of weeks! Waiting for the results or the sensory pains? Which is worse? WAITING!
Soo, plan things out in your own mind as to what you need… remember that docs in any hospital aren’t listed alphabetically? But, more like by seniority or pecking order and then go from there. Follow your instincts and learn, and never, ever ever! be afraid to ask the docs what ‘seem’ like silly questions!
Ask and seek answers – it makes you both memorable? AND hard to ignore!
Keep at it! Hope you can and will-I have faith that you can.
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