Totally Confused after visit to UFHealth Neurology

General General CIDP Discussion
1

I'm writing this in hopes that it will not bring sympathy my way but will instead let those new to the world of CIDP know that the road to being properly diagnosed is not always an easy one My wife and I were sent back up to UFHealth Neurology to see yet another Neurologist. My Neurologist who sent me there shortly after my spinal tap in November of 2015 when my spinal tap at that time showed a 65? and my Neurologist said that given my elevated protein and EMG tests that I had CIDP...but, he wanted a second opinion from UFHealth Neurologist...The Neurologist did his EMG and agreed that I did have CIDP. Now, this past March 24th, my wife took off from work to go with me to UFHealth once again to see yet another Neurologist for yet another opinion...This Neurologist upon greeting my wife and I, did not have any of my recent blood work or records that had been given ahead of time. After a short series of tests the Doctor said that she did not feel I had CIDP but did have neuropathy in my feet...We were then told that we would have to come back on May 12th to see Dr. Triggs and at that time he would do an EMG test...My wife broke down and cried in front of the Doctor and asked if somebody could please get me some help...The doctor said that she was leaving the hospital in a few weeks, (about the time her baby was due to be born) and she would not be coming back to work there as her family was moving out of town...My wife once again took off from her job to once again accompany me back to UFHealth to see Dr. Triggs. Once in the room the nurse said that "someone" would be with me shortly to do my EMG test...After about 20 minutes waiting, a lady came into the room and asked me to put on a gown and then returned to perform the "First part of the EMG test" which would be followed by the Doctor doing the rest of the test. She quickly found that I had severe neuropathy in my feet and upon completion of her part of the exam, said, I will go and tell the Doctor your ready...A few minutes lady, a man appeared in the doorway accompanied by a young man. The young man came into the room and sat down at the computer facing me. The older man stood in the doorway and said, "You do not have CIDP"...He did NOT introduce himself to my wife nor I, nor did he say hello, nice to meet you, nothing!..I asked him if he was going to finish the exam, to which he said "there is no need to, you have severe Neuropathy"...I asked, "what is causing the Neuropathy?, to which he said, "I don't know, perhaps it was something you were born with and it just started showing up years ago"...I asked about the elevated protein to which I was told, "It is probably due to your back surgery you had. My back surgery was in Feb. 94'...Needless to say, my wife whose a nurse, said that in all of her 30 years of nursing, she has never seen such poor bedside manner as that doctor displayed that day...Two weeks ago my left ankle gave way three days in row and my right went out once this past week. My Neurologist sent me last week to have foot/ankle orthotics made...I can only hope that someone reading this will be able to help my wife and I by putting us in touch with someone who can once and for all diagnose exactly what it is I am dealing with...

Sorry for being so long winded...

2

I totally feel your pain.

my journey started 5 years ago when my right calf muscle started to atrophy. i am 7 ft tall and have always been in good shape with lots of muscle. I am finding out now that that was not a great thing because it hid the symptoms. i went through 3 orthopedic docs trying to see what it was. got 3 epidourals and no help. the last otrhopod did the MRI and nerve test and said that i have bulding discs and stanosis on L4 and 5, my spin was narrow, but i still had nerve conduction down to my knees, so my spin was ok, no surgury. (diagnosis) undiagnosed peripheral neuropathy. No treatment assigned.

So my wife said lets get to a neuro. BTW, Dr. Hayden here in Bloomington Il is the absolute best. He satred with all kinds of genetic testing, and rules out all of the bad stuff, ALS, etc. The we had the lumbar tap, and the doc that did it was horrible and resulted in blood in the first tube, and i had a spinal headache for 10 days. couldnt get out of bed. But because of the horrible tap, there was protein and hence confirmation of CIDP.

so as we should we started IVIG. didnt seem to make things any better, so we decided to stop. had i known then what i know now we would have kept going. While it has side effects, it kept me from getting worse. after it didnt work, i was sent to a neuro/muscle specialist. Like you said, all tests had to be run again. Also no treatment for the 11/2 yrs for all of this retesting. This time Lumbar done right, and no Protein. UGH. now what is it.

now i have had not treatment for 11/2 yrs. muscle all over have attropied very badly. Now need stair lift, scooter, and foot braces. Also getting back brace as my spin has shifted to the left about a half in. Lots of constant pain.

tried to get to Mayo, they wouldnt take me. Said all tests had already been done.

so far, i have undiagnosed peripehral neuro below the knees.

so the next thing to try is the Muscle and nerve biopsy. Had that done and the Histo/cyto slide showed Polymyocitis. UGH.

My CPK, indicator of muscle breakdown was at 550. so the RA doc put me on 40mg od prednisone and that got the CK down to 150 normal. still continued muscle loss.

With now no clear path of what i reall have and what to do, i have asked to get back on the IVIG, to at least ry to keep it from getting worse.

i feel your pain in not really being able to get a diagnosis or any real treatment.

hope that some of this will help to get yousome more informstion. i have done a lot of reading nd as i am in the medical inductry, i have a petty goodunderstanding of things but it is still very frustrating.

you r not alone

3

Thanks so much for your post. I am being sent to Mayo Clinic( in Jacksonville, Fl ) for help with my CIDP. My husband has to take time off from work and it is quite a drive from Polk City which is where I live. I believe I am going to get an apt with this Dr. Allaudin Khan before I go to Mayo. Dade City is only about 30 minutes from here. I am reassured because of your post that this dr is knowledgeable in CIDP. Again, thanks so much!

Melissa Kelley

DazedandConfused said:

Roy,

And the wheel keeps turning!

So many of us have experienced similar issues. One physician diagnoses "idiopathic neuropathy" and another diagnosis CIDP. Some diagnose nothing at all and blame things on prior back surgeries. Your travels sound very similar to mind, right down to U of F, though I was told I had vasculitis or another "scarier" neurological disease there, but no definitive diagnosis.

My wife also had to take days off of work to accompany me, push my non-powered wheelchair, etc.. just to come home as frustrated as before, if not more.

I am not knocking U of F, but it seems that in any large medical institution there is a lot of room for interpretative error, especially when there is a lack of continuity of care among the attending physician(s).

USF was not much better...in fact, they sent me to Moffitt Cancer, telling me they thought I had a metastatic illness!

After that being ruled-out, at the end of our collective rope, my wife and felt (and stil feel) blessed to have found Florida Medical Clinic.

Dr. Allaudin Khan was then in Wesley Chapel, FL but is now practicing out of Dade City, FL...which may make it less of a burdensome travel for you. You may wish to think about him as an alternative opinion, as he is a neuropathologist as well as a "standard" neurologist.

I cannot say enough good things about Dr. Khan and his entire office staff...they likely saved my life.

Just use a search engine to look up "Florida Medical Clinic" and then the physician's directory and look him up under "Neurology" or by last name.

That is the best advice I can give...referring you to the physician who ended a long and arduous, frustrating and scary search for what was causing me to become so disabled.

God bless, and I hope this is of help to you and your wife.

4

I too went to UFHealth and received no help. After the second visit I determined it was a waste of my time and effort. I did not feel as tho I was being taken seriously as to my pain level. I was diagnosed by Mayo Clinic and for 2 years was being treated for CIDP then the neuro had read an article written in the Netherlands that Chemo caused neuropathy so my dx was reversed, I did not have CIPD. I don't really care what caused it I just wanted relief from the pain which is why I went to UFHealth. I wish I was able to go to one of the Centers of Excellence for CIDP and get a definitive dx but that is not possible, it was difficult enough to find transportation to the Mayo Clinic and UFHealth as I live in a rural area with no public transportation & am a widow so no husband to drive me. I am 79 have multiple myeloma, IVIG treatments were helping but Medicare will no longer pay for me to have them since my diagnosis has been changed. At the present time I am trying acupuncture in the hopes that will help my pain. I don't wish to spend the rest of my days doped up on pain pills and living life in a blur.

5

I wish I could understand your journey. I was diagnosed correctly with cidp after first emg. Neurologist was surprised at results since I was then still getting around ok. She recommended Ivig right away. Went to two other neurologists first and was diagnosed on the spot with Dads disease? Idiots. When I asked first neurologist to send records to others, she agreed but said I needed to go back to her. She was right and had nothing to gain by this. She knew I was not going to get the right treatment. Since most of costs are covered by Medicare she was not in it for the money. Have been on Ivig for about two years and it has been “a miracle”. Why do I hear so many stories about woefully uninformed doctors?

6

To add to previous reply, do most people know that nerve biopsies and spinal taps are pretty much useless for diagnosing cidp?

7

How very frustrating! My brother also had symptoms for 10 to 14 years, at first gradually and later speeding up to almost complete paralysis. He was also referred back and forth from neurologist to orthopedic specialist. There was a possibility of MS or CIDP. He has had 4 infusions of IVIG, but there now seems to be yet another possible diagnoses which may lead to another neck operation (he has already had three).

All the very best, I hope you will find help soon. By the way, where do you stay? We are in Centurion, South-Africa

Best regards,

Susan

8



Susan said:

How very frustrating! My brother also had symptoms for 10 to 14 years, at first gradually and later speeding up to almost complete paralysis. He was also referred back and forth from neurologist to orthopedic specialist. There was a possibility of MS or CIDP. He has had 4 infusions of IVIG, but there now seems to be yet another possible diagnoses which may lead to another neck operation (he has already had three).

All the very best, I hope you will find help soon. By the way, where do you stay? We are in Centurion, South-Africa

Best regards,

Susan

9

I am no different than the reat of you with stories that would grow hair on a lemon! I would rather have the doctors say they didn’t know (which mine did) and slowly and methodically! work toward a diagnosis than to “fake it” with “severe neuropothy” then drop any attempt to find out more or to at least try empirically effective modes of therapy. It took my doctors almost four years till the EMGs changed and the protein rose past the threshold level for a diagnosis. I had that Dx verified at Vanderbilt University Neurology Center (a Center of Excellence" by Dr. Peter Donofrio, the head of the neuro-muscular/CIDP department. They are in Nashville, TN

Thank God the trend in the literature is to put more weight in the mode of onset and other clinical factors rather than put all the weight in the protein and the EMGs, whose interpetation is murky at best. Good luck and God Bless, Geepster

10

I was admitted to Mayo through the emergency room because I was in the most severe pain I have ever had and I could not stand on my legs, they just buckled under me. I had EMG, nerve biopsy, spinal taps, the neuro told me he took all of my tests to a seminar in San Francisco that he attended and the consensus was I had CIPD. Then after reading the paper on chemo and neuropathy he said I did not have CIPD. I have no feeling from the knees down to and including my feet in both legs and both hands up to my elbows. I am not presently getting any treatment except for the acupuncture I have just started. My neuro says I need IVIG treatments but Medicare won't pay for them. I am in a lot of pain. Who knew that something that had no feeling could cause so much pain. I was admitted to Brooks rehab center for physical therapy and did learn how to walk on "dead feet" after leaving there I had 7 mos. of PT at home. I went from the wheel chair to the walker and finally a cane but while the intensity of the pain has lessened it is always with me. The Gabapenten helps. I will only take the hard core drugs when the pain becomes intolerable. I am sure there are people worse off than I am, I have a home and food to eat my cancer is still in remission so I give thanks to God for what I do have and just keep going



Geepster said:

I am no different than the reat of yoyo with stories that would grow hair on a lemon! I would rather have the doctors say they didn't know (which mine did) and slowly and methodically! work toward a diagnosis than to "fake it" with "severe neuropothy" then drop any attempt to find out more or to at least try empirically effective modes of therapy. It took my doctors almost four years till the EMGs changed and the protein rose past the threshold level for a diagnosis. I had that Dx verified at Vanderbilt University Neurology Center (a Center of Excellence" by Dr. Peter Donofrio, the head of the neuro-muscular/CIDP department. They are in Nashville, TN
Thank God the trend in the literature is to put more weight in the mode of onset and other clinical factors rather than put all the weight in the protein and the EMGs, whose interpetation is murky at best. Good luck and God Bless, Geepster
11

Medicare will most definitely pay for Ivig.

12

No, Medicare will not pay for IVIG since my dx has been changed from CIDP, my new Neuro has tried, the Neuro at Mayo sent me back to Oncology. I have, like others, many different diagnosis since I was told it is not CIDP. I have called Medicare, without the CIDP code they will not pay. I have even written my congressman.

melaniemassey said:

Medicare will most definitely pay for Ivig.
13

There are three ways to be covered by Medicare. Medicare alone will pay 80% of the allowable charges, Medicare with a Supplemental Plan, the plan you chose determines the percentage above the 80% Medicare Coverage, some will pay the total 20%, but the plans are not cheap. There is the Medicare Advantage Plan and there again it depends on which plan you choose. I have one that the co-insurance is 15% of their allowable charges. They all require your treatment to be from an institution that is in their network. Meaning they have agreed to accept the amount Medicare will allow to be charged for treatments, labs. etc. Mama Bear, maybe the institution you have sought treatment from is not in the Medicare Network The Medicare Advantage Plans all have a maximum out of pocket expense required to be paid by the patient. Mine is $3,100 for 2015. Last year it was $2,500. and I am sure 2017 will be increased. I had no trouble at all with getting the coverage. It was authorized for 29 years. Ha, ha. The only odd thing I have come across is that Medicare alone will not pay for in home infusions. Linda Meyer

mamabear said:

No, Medicare will not pay for IVIG since my dx has been changed from CIDP, my new Neuro has tried, the Neuro at Mayo sent me back to Oncology. I have, like others, many different diagnosis since I was told it is not CIDP. I have called Medicare, without the CIDP code they will not pay. I have even written my congressman.

melaniemassey said:

Medicare will most definitely pay for Ivig.
14

Roy

I had a similar issue. My original diagnosis by my neurologist was approved by UHCare and I started IVIG's. After 6 months the company changed from UHCare to Cigna. Cigna said I did not have CIDP and stopped the treatments. It was only after I went to the VA hospital in Houston that my treatments were resumed with a finding by the VA neurologist of CIDP following a review of my medical records. I wish you luck but have concluded that many physicians are being overly influenced by insurance companies today. Contact your state insurance commissioner; by law you maybe able to appeal the decision to a third party.

Harry

15

My secondary insurance TriCare for life will pay 80% for home infusions leaving me a co-pay of $5,000. I am a widow, and do not have that kind of money. I am not indigent but do not have that kind of money.. I am not really comfortable w/home infusions because the multiple myeloma has compromised my kidneys and I have always had treatment in the hospital. Mayo could probably get the treatments paid for but transportation is a big problem which is why I left there to begin with.

Sandy said:

pay for Roy

I had a similar issue. My original diagnosis by my neurologist was approved by UHCare and I started IVIG's. After 6 months the company changed from UHCare to Cigna. Cigna said I did not have CIDP and stopped the treatments. It was only after I went to the VA hospital in Houston that my treatments were resumed with a finding by the VA neurologist of CIDP following a review of my medical records. I wish you luck but have concluded that many physicians are being overly influenced by insurance companies today. Contact your state insurance commissioner; by law you maybe able to appeal the decision to a third party.

Harry

16


Thanks Linda for that precise answer regarding Medicare paying for IVIG treatments for CIDP patients. I saw my neurologist on 3/2/16 because of recent symptoms in the past weeks of fatigue, increasing leg and hand cramps and dull pain in feet crawling up to my calves. I am a multiple myeloma/lymphoma survivor of 12 years and have had PN for years, but even after all the chemo, that was not what determined the diagnosis. It was my fast increasing symptoms. A definitive diagnosis was made on 3/4/16 and an order made for IVIG treatment. I am now waiting for Medicare approval so good to know it will probably not be refused. I too have the Advantage Plan supplement, which has covered all my treatment costs above medicare without any trouble.

Do you know how long it takes for Medicare to approve the order for IVIG?
Linda Meyer said:

There are three ways to be covered by Medicare. Medicare alone will pay 80% of the allowable charges, Medicare with a Supplemental Plan, the plan you chose determines the percentage above the 80% Medicare Coverage, some will pay the total 20%, but the plans are not cheap. There is the Medicare Advantage Plan and there again it depends on which plan you choose. I have one that the co-insurance is 15% of their allowable charges. They all require your treatment to be from an institution that is in their network. Meaning they have agreed to accept the amount Medicare will allow to be charged for treatments, labs. etc. Mama Bear, maybe the institution you have sought treatment from is not in the Medicare Network The Medicare Advantage Plans all have a maximum out of pocket expense required to be paid by the patient. Mine is $3,100 for 2015. Last year it was $2,500. and I am sure 2017 will be increased. I had no trouble at all with getting the coverage. It was authorized for 29 years. Ha, ha. The only odd thing I have come across is that Medicare alone will not pay for in home infusions. Linda Meyer

mamabear said:

No, Medicare will not pay for IVIG since my dx has been changed from CIDP, my new Neuro has tried, the Neuro at Mayo sent me back to Oncology. I have, like others, many different diagnosis since I was told it is not CIDP. I have called Medicare, without the CIDP code they will not pay. I have even written my congressman.

melaniemassey said:

Medicare will most definitely pay for Ivig.
17

sorry to confirm your frustration. my best advise is try to stay on the IVIG as long as you can. my first Neuro who is great diagnosed CIDP. i was on IVIG for a couple years, but didnt feel like i was getting any better, so i wenjt to the Neuro specialist so they stop all IVIG while testing me for a year or so, and without the IVIG i got worse symtoms.

After repeating all the same stuff, and coming up with the same diagnosis, now just worse physically cause no IVIG, my wife asked about getting a nerve and Muscle biopsy. so we did. that came back comclusive of Inclusion body polymiositis. treatment for that is high doses of Prednisone and again no IVIG until the the pred doesnt work. well it didnt so now back on the IVIG. got lower dose of Pred simultaneously, but now CK back up again. Still really bad flu like symtoms this whole month after IVIG. hope next dose will relieve some of the symtoms. so try that as the treatment for both the CIDP and IBP are the same. not much helpful info, but you are not alone. hopw you find some comfort