John's Hopkin's Appt. Today
 

I had my appt today with that same neuro from the shaking episode he couldn't figure out. My local neuro sent me there for PN testing. JH doc doesn't think I have MS, said to pursue it further locally if I felt the need.

RE: my arm fatigue and all over fatigue, he is doing a small fiber neuropathy test, I beleive the punch biopsy. So at least SOMETHING,,,,,he started rambling about "somatic illnessess" again before he's even done a test..he said there are so many tests that can be done..but basically why bother......I feel like he has already pigeon holed me into some category for some reason.

He did find that I felt cold more on my thigh than foot...and seemed surprised...my feet have been bothering for years...and I was sent by my neuro there....who although doesn't speak much seems to know what to do....He also reordered a tilt table test...and on the slip he had written for reason: questioning dx of dysautonomia. Does that mean he doubts my cardiologist...???? OR is looking for more clues??? he had mentioned that may be causing this a.mm shaking thing, or rather that it needed more treatment....(the POTS) though that is not why i even went today.....anyway I remained calm, unlike my crying episode last time.

.....My arms are so tired at night i have to prop my paperback on a pillow to read.....yet he says that may be somatic...I just don't get it...I wanted a different doctor. I guess I should have pushed harder for that but he had a cancellation and I thought for sure I'd get a bit more of a response..Is this normal????? He did order the two tests...and did say I should have the PN test there as they are good at reading the results there....Maybe I am expecting too much???? Well I didn't cry and something has been done.

OH, and by the way My reg. doc found my Vitamin D level low and that can cause muscle fatigue and weakness!!! I am to go on 50,000 unit pill once a week. Apparently this has been in the news alot lately about the D levels.......supposed to really help....and can slow progression of MS.....or even prevent it.

Your not asking for too much at all. In the mean time in case you want a second opinion or need more tests can you make an apt with the other doc? Its better to have it then not to and have to wait. As for d level. Do you have osteoporosis? Just wondering I do but my d level is fine. Not sure what I'm asking that for. I have muslce fatigue but thought it was from the pain. Maybe one of the viatmin/supp like Rose can help you more on the D issue. I take glucosamine msn and I heard that is suppose to help along with magnesium. Again though ask cause I have no clue. Just call me clueless but sending thoughts.

Dr. John Geiffin is the head of the dept at JHH.
He's my neuro.
Phone: 410-955-2227
Fax: 410-955-0672
His appt sect'y is (I think ) JoAnn.
If you need to pursue another doc,
I'd suggest Dr Cornblath.
Asking for another doc is not unreasonable, but sometimes
considered by the staff to be a PIA.

Hi there.

I have heard that sitting in the sun for 20 minutes a day, provides us with lots of Vitamin D.

Hope it is sunny where you are!!!

Best and warm wishes.

Melody

thanks everyone
 

Bob, what does PIA mean? They had originally put me with a PN specialist but then put me back with Dr. Dash. I just get a weird feeling like he is not taking me seriously cause, not even doing some of the tests I have seen online...maybe after the tests they will put me with someone else.....I could barely hold on to the standing Romberg nor do the tandem at all and he said it was probly a "medicine effect" . Well who knows. Maybe I am being overly concerned but after all the effort of getting up there didn't seem so special...at least he talks! My local neuro barely says a word. I am going to change, (the local) but am in the middle of SSDi case so I am going to wait. For now. Found a group with a website that says they are compassionate.

Re: the D.....apparently is quite an epidemic and not routinely checked. I do not believe I have osteoporosis yet....48 years....if you live above a certain lattitudes you can't get enough in winter and there is not enough in milk and such....you may want to google it, there is a lot of talk about it in another forum i use for fibromyalgia...I hope it does help......I don't know how to cut and paste an article or I would!

Hi. You may want to get a bone density. I'm 29 and have osteoporosis and had osteopenia at 20. I'm not saying this is the cause but just to prevent other issues. Also there are other foods that contain those nutrients other then milk. Hang in there.

I too, have to ask what PIA means...
 

Tho I suspect, knowing Bob, I mite not 'like' the answer.

BTW: I too recently found that I'd no, NOT ANY notable Vit D when I was tested - recently really tested for thyroid [I'd been hypo -underactive for years]. Turned out my thyroid had gone auto-immune along with my neuropathy. But I'm also on anti-cancer meds that purposely BLOCK those estrogens that cancers like to feed off of...Those took me over the 'line' from osteopenia to porosis...The same estrogens that are needed to build bone. Took a concerned Oncologist after my last bone scans and a note from my Podiatrist who'd taken exrays for a possible new broken foot bone to show that the newest Dexa/bone scan showed I'd lost lots of that good old density. I'm now chomping down as much of and above the doc recommended calciums, D's , complementary magnesiums etc as I can stand. That's brought up the #'s in my system up to what it should be, but what I'm actually asorbing is TBD w/more testing.

I have to say I am really glad that you are getting what seems to be a whole and thorough going over. You ARE getting somewhere - and it's got to be for the better! :hug: :hug: 's !!!!!!!! Keep at it! - j

I guess what I'm thinking is...
 

if the PN test turns up negative,,,,and he doesn't want to pursue matters do I just let go for now? Or do I seek a second opinion? I know, I am already rushing ahead of the game...I just feel like that is all he will do....and the tilt table....my cardiac doc that I loved to death moved out of state....just up and left...don't know all the reasons...can you ask for a second opionion from a doc at JOhns HOpkins?????? I do have fibro....or so I was told...maybe I need to stop trying so hard I just want one freaking test to be abbnormal cuz I feel so cruddy!!! If you know what I mean........but i surely don't want cancer so maybe I should sit back and wait..........thanks for all the support everyone!

PIA assume he means "pain in the you know what."

Cathie

Yup!
Pain-In-The-*****
If you get someone who you wish to help you with any change, (who isn't having such a good day), they can be a real obstacle, and consider your 'problem' inconsequential -and also tag you as a troublemaker, and a PIA (or also 'PITA' & I don't mean bread.) ;).