[antonina]

On April 6 I get to see a neuro @ JH.

A brief history of my PN experience: Very powerful chemo in 1999 left me wheelchair bound for a year. Improved and switched to using a cane for a few years until a broken ankle did me in. Since the fracture, I've had worsening leg weakness, pain, numbness, etc.

For 12 years I have not had a definitive dx. Most docs I've seen believe it's PN but the chief neuro @ Sloan Kettering says it's Fibro. My rheumy says it's not. But no one says it 's something else plus PN mixed in, ie, autoimmune which is my hunch based upon elevated ANA levels & sed rates.

Needless to say, this trip to JH is a major undertaking and I want to make the most of it. I know there are knowledgeable people here and I'm hoping you can point me in the right direction.

[nide44]

I go to Hopkins. I really like the treatment and over-all general help I get from them.
But its a big hospital with a large neuro dept.
It really depends on who you are assigned.
There are dozens of neuros there and they cross-over in specialties.
There are many foreign docs doing residencies there. They are not part of
the permanent neuro staff
I'd ask for a specialist in the area that you wish to investigate/pursue.
My PN specialist is semi-retired, and was the head of the neuro dept there, Dr. Griffin.
I now usually see his PA, Tami.
Dr Cornblath is also a good neuro to delve into testing and causes, if you can get an appt with him. His schedule is pretty tight.
Most of the neuros you will see are residents as this is a teaching hospital and every time one comes into the room, they ask you the same questions over and over. Be forewarned, it can get frustrating until you see the doc you actually will be assigned to, and treated by.
Then you have to cautiously and diplomatically figure out if this is the neuro that has the kind of specialty that can help you.
If not, you'll have to try to ask around for a suggestion as to who would be the best doc for your case.
Its a big dept and finally getting the right doc is very important. From there, the resources of a world renowned institution will be available to you.

[antonina]

Bob,
Thanks for the info.

I have an app't w/ Dr. Ahmet Hoke who kind of replaced Dr. Griffin with whom I had a Nov. 2010 app't but because of illness he had to cancel.

Do you have any knowledge of Dr. Hoke? If so, would you pm me?

I'm used to the drill of a teaching hospital (I go to Sloan Kettering two or three times a year for check ups). At first I thought of it as a PITA to have to see the fellow first and then the attending and have to repeat the exam, the questions, etc. But I'm used to it now.

I'm very anxious about seeing Dr. Hoke since the trip from NYC is a major production for me. My Boston-based daughter is coming w/ me and it involves lots of schedule changes, etc.

So I'm back to asking what, if anything, PNers recommend I ask of Dr. Hoke.

[en bloc]

I too use JH for most of my care

What questions to ask all depends on what testing you've already had done, what treatments/meds you're taking, and whether symptoms have changed.

Sorry I don't know your history, so what I say may be useless.

If there is any question of an autoimmune process, then you should see a rheumatologist for a proper work up and labs to rule out lupus, RA, Sjogren's, etc. A positive ANA, can indicate an AI process, but more defined tests need to be done to confirm. Once you are in the JH system, it is easier to get into other appts. So my first question would be to ask him to consider this angle and maybe for a rheumy consult if he thinks it's a likely cause of your problems.

The symptoms mentioned are leg pain, numbness, and weakness. I'll assume you have had an EMG. How long ago? Do you have other signs of AI disease...other than +ANA? If so, what?

If you have not had a skin biopsy for small fiber, JH has an excellent lab for this.

http://www.hopkinsmedicine.org/neuro...ous_nerve_lab/

Do you plan to stay there for testing...or come back if they order tests? The going back and forth can take a toll, but they have schedulers that can coordinate testing together (they are used to this with people coming from all over).

I hope you hand carry your records and important tests results...even places like JH lose records.

Ask him look at your meds for possible causes of PN also. Tell him not only what your symptoms are but how they have changed...and when.

Sorry I don't have more to offer.

[antonina]

Thanks en bloc for your post.

I've had about 5 emg's done over the years and none has shown much in the way of a conclusive dx. I am having one done Wed @ JH and a skin biopsy too. Not one of my many NYC neuro consults ever suggested a biopsy. I believe the procedure was pioneered @ JH. That fact motivated me to seek out someone there.

I wish I had thought of a rheumy consult before scheduling my neuro app't. I have seen at least 4 in the recent past. The last one said he did not think the +ANA or a +sed rate had much to do with my sx.

I will be @ JH on Wed (Dr. Hoke) & Thurs I have an app't with an endocrinologist (Dr. Cooper). I have had Hashimoto's disease (low thyroid) and would like a 2nd opinion.

I am hand carrying lab results. Other records were forwarded directly to docs' offices.

Are you happy with your care? What meds do you take?
If you had a skin biopsy what did it show?

Thanks again for your help.

[en bloc]

I'm glad to hear you'll have skin biopsy done, since EMG's cannot detect small fiber neuropathy.

I am very happy with my care at JH. It's a 3 hour drive each way (and I go fairly frequently) but well worth it.

I had two skin biopsies. They both showed unusual looking fibers but not conclusive (in regards to density) to call it SFN. My diagnosis (ganglionitis) came from a new MRI at JH that looks directly at the dorsal root ganglia.

I currently take a vast array of meds...mostly for cardiac and GI due to severe autonomic neuropathy. I also take Plaquenil which is a DMARD used in autoimmune disease (I have Sjogren's) and Heparin (LMWH) injections for APS (another autoimmune disease that causes blood clots). I don't have much to tell you in regards to neuropathy meds. I have not had any luck with the typical anti-seizure or anti-depressants for neuropathy pain. So right now I'm only trying R-lipoic acid. I have only done so for a couple weeks so not fair for me to judge it yet.

JH is almost all computer records so "paper" records can easily get lost in the shuffle. I would call (Monday) the dept.'s for your appts and confirm that they received the records from your doctors...just in case. You should always keep a copy of your records for yourself anyway.

Good luck and let us know how your visits go.

[nide44]

Sorry, I don't know of Dr Hoke. Just Griffin, Tami, & Cornblath
There is a housing/rooming deal available for people who come in for a short stay at Hopkins. Anywhere from a day or so, to a week or so. The outfit is called McElderry House Lodging. Pm me if you want a contact address & phone #.
Dr hoke seems to have a bio here:
http://www.hopkinsmedicine.org/neuro...8EB/Ahmet_Hoke

And is listed as:
Professor of Neurology and NeuroscienceDirector,
Division of Neuromuscular Diseases
Director, Neuromuscular Medicine Fellowship Program
Specialty Areas:
ALS CMT Neuromuscular Pathology Peripheral Nerve

I'm not sure that this was Dr Griffin's past title, but he seems
to be fairly high up on the totem pole/food chain.

[antonina]

Hi Bob,
I'm staying @ Henderson's Wharf for 2 nights. I just phoned McElderry for info because I might need to make repeat visits. Thanks for the tip.

Has Dr. Griffin retired? His secretary seemed upset that he had to be hospitalized and could not see patients for the foreseeable future. Any idea what's up?

A JH web site I saw in Oct '10 seemed to indicate that the PN center was run by both Griffin & Hoke. I just read Hoke's CV. Wow! Lots of training, experience & publications! Let's hope he can reasonably apply these to patients.

[nide44]

Originally Posted by antonina

Hi Bob,
I'm staying @ Henderson's Wharf for 2 nights. I just phoned McElderry for info because I might need to make repeat visits. Thanks for the tip.

Has Dr. Griffin retired? His secretary seemed upset that he had to be hospitalized and could not see patients for the foreseeable future. Any idea what's up?

A JH web site I saw in Oct '10 seemed to indicate that the PN center was run by both Griffin & Hoke. I just read Hoke's CV. Wow! Lots of training, experience & publications! Let's hope he can reasonably apply these to patients.

I hope that his bedside and patient/doctor relationships
will be a positive for you, too.

Griffin has been on a few surgical leaves and quite some time on medical leave over the past 2-3 yrs. dunno what his exact problem may be, but suffice it to say that he's not all that well, but is so devoted to his work that he sneaks into the hospital when he's supposed to be on leave, and continues to try to do research work and office work. When they catch him, they send him home. Refuses to retire altho he's in his 70's.
Devoted to his work. I've liked him from the moment I first saw him in 2000. A really nice man who has concern for his patients and his work. Read his bio and publications list sometime - talk about impressive !

Henderson's is a nice place, right on the water in Fells Point. You'll love the area. Plenty of restaurants, pubs, shops, etc. The historic part of Balto.

My lock shop is only a few blocks from there on Eastern Ave at Ann St in the more Hispanic section of Fells Point. When I opened my shop in 1980, there were no Hispanics in the area. Hispanic Restaurants and carry-out shops are now nearby.
Fells Point always has been an immigrant magnet though, being the original center of the shipbuilding trade and a historic district, on the water and a port area. Years ago (before & after WWII) it was Polish immigrants and then some German, but heavily Polish Catholic. Lots of Polish churches in the area between here and the ' Canton & Highlandtown' sections of the city, adjacent to Fells Point.
Balto. is a city of 'neighborhoods' each with its own ethnic cultural flavor. You'll like staying here.

[antonina]

Thanks for clarifying Dr. Griffin's situation. I actually phoned his # back in 2010 and he picked up the phone and talked to me at length!! I was blown away. No doc I've ever known picks up his own phone much less spends more than 1 or 2 minutes talking to a stranger. He sounded very warm & caring. That's why I was so bummed when he had to cancel.

I'm looking forward to visiting Balt, especially eating lots of good seafood. We're deciding between Bertha's or Dudas for tonight's dinner.

I'm about to head to Penn Station. Will fill you in when I get back.

Thanks for a summary of Fell's Point history. Sounds like a fascinating area for us to explore.