John Hopkins?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

John Hopkins?

Postby errolm343 » Mon Oct 30, 2017 12:00 pm

What can i expect from JH?

I'm undiagnosed. I've had symptoms for about 4 or 5 years now. I've been hospitalized 2x. Every MRI I've had prior to 2017 showed signs of demylenating disease, but no actual lesions. Early this year I was hospitalized for weakness/numbness, and tremors. The hospital told me to schedule an appointment with a neuro as I had recently moved and did not have one, it took me a little bit to get an appointment.

He ran a full workup of bloodwork, MRI and a LP. Everything on the bloodwork came back normal. The LP was negative. However my MRI now showed, according to the radiologist report, "multiple lesions consistent with a history of multiple sclerosis". My local neuro said he wasn't sure what was going on and I needed to go to a secondary facility. I was able to get him to refer me to JH MS Center, about 3 hours away.

After sending all my records, radiologist reports, and copies of my MRI's etc from over the past 5 years, I received a call from JH and the lady said "after the doctors reviewed your records, they will be accepting your case" and scheduled and appointment.

So, I'm now a few weeks away from going in. No idea what to expect. I will be seeing Dr. Bardia (I think that was his name). Has anyone ever been there, and what can I expect? I am just used to hearing Dr's say "it looks like MS but I dont think thats it". Really, I am just nervous to be actually going to see a Dr who specializes in MS.
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Re: John Hopkins?

Postby jimmylegs » Tue Oct 31, 2017 6:01 am

hi and welcome.
have no input on the jh sitch but someone may.
if you can share your bloodwork results we can let you know if there are any gaps in tests run which could be worth exploring, or if there are any red flags within those treacherously acceptable-sounding 'normal' results.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: John Hopkins?

Postby errolm343 » Tue Oct 31, 2017 6:20 am

I do not have the full blood work results. All I have is Dr notes saying "laboratory testing were unremarkable". I was tested for Fabry disease as well, that came back negative. No bands in my CSF.

Dr notes say MRI shows "only evidence of nonspecific high signal changes on the patients MRI scan of the brain, evaluation for possible demylenating disease unremarkable at this time"

However, the radiologist report states "there are multiple subcortical non enhancing white matter lesions would be consistent with a history of multiple sclerosis. No multiple sclerosis lesions involving cervical or thoracic spine."

I just didn't feel comfortable with my neuro, almost as if he was unsure of making any type of diagnosis himself and that's why I wanted a referral.
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Re: John Hopkins?

Postby jimmylegs » Tue Oct 31, 2017 6:26 am

ok if you can, ask for a copy of or online access to your results. 'normal' is a big pile of bs. imho ;)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Posts: 10769
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Re: John Hopkins?

Postby errolm343 » Tue Oct 31, 2017 8:13 am

Here are the results I was able to get.

Vitamin B12 = 789

NMO IgG Autoantibodies = 1.8

TSH = 0.847

Sjogren's Anti-SS-A = <0.2

Sjogren's Anti-SS-B = <0.2

Lyme IgG/IgM Ab = <0.91

Antinuclear Antibodies Direct
IgG P39 Ab.
Absent
IgM P39 Ab.
Absent
IgG P66 Ab.
Absent
IgG P41 Ab.
Absent
IgM P41 Ab.
Absent
IgG P58 Ab.
Absent
IgG P18 Ab.
Absent
IgG P30 Ab.
Absent
IgG P93 Ab.
Absent
IgG P28 Ab.
Absent
IgM P23 Ab.
Absent
Lyme IgM WB Interp.
Negative

Lyme IgG WB Interp.
Negative
Positive: 5 of the following Borrelia-specific bands: 18,23,28,30,39,41,45,58, 66, and 93. Negative: No bands or banding patterns which do not meet positive criteria.

IgG P45 Ab.
Absent
IgG P23 Ab.
Absent
Antinuclear Antibodies Direct
ANA Direct
Negative
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Re: John Hopkins?

Postby jimmylegs » Tue Oct 31, 2017 1:15 pm

ok! do you have the units for that b12 number? (looks good either way but am curious *how* good)

lots of gaps there as far as nutrients of concern for ms patients are concerned. how receptive are your docs to test requests? in addition to b12, i'd be wanting to see serum 25(OH)vitd3, serum ferritin, serum magnesium, serum copper and serum zinc. plus serum uric acid for funsies.

have your docs ever flipped you a referral to a pro dietitian? anyone ever asked you for a three day diet diary for analysis?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Posts: 10769
Joined: Sat Mar 11, 2006 3:00 pm

Re: John Hopkins?

Postby errolm343 » Tue Oct 31, 2017 1:26 pm

B12 range is

211-946 pg/mL

My last neuro said that was all that was needed test wise, but I'm sure I'll get more done once I get to hopkins
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Re: John Hopkins?

Postby jimmylegs » Tue Oct 31, 2017 2:05 pm

ok pg/ml for that you want to be at least 500 so 789 is decent. in pmol/l, you want to be at least 370 so 789 would be super safe side. the normal or reference range you always see is one thing; 'optimal' is quite another.

don't count on the full list above being ordered by default at jh. quite the opposite. not mainstream standard of care. yet. unfortunately.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10769
Joined: Sat Mar 11, 2006 3:00 pm


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