New to MS and the forum

[JimboP]

Hi all,
I am 54 and my diagnosis was just confirmed Monday 8/8/16 and I am still in the throws of my initial attack. It started on 7/14 with a 'bit of numbness' in my right thumb and fore finger and progressed from there to where my right side from my ear to my hand 'feels weird'. It feels like I have a very tight wristwatch on and my shirt feels like it has lead weights. My motor skills are not up to par and I just feel 'weird'. I can't explain it at all.
My first MRI found a lesion in my C2 spine and the Neurologist said 'might be a tumor, lets give it a month and come back for another MRI' - then discharged me from the hospital (that's really simplified, there were many more tests). The symptoms got worse and after 10 days I went back to my PCP and she admitted me for three days of IV steroids. That's when my new Neurologist told us that she disagreed with the previous assessment - not a tumor, looks like MS. That led to a spinal tap where MS was confirmed.
The steroids seemed to bring back some strength but I still feel 'weird'. My 'reducing dose' steroid treatment ended three days ago and my symptoms are worse than ever. I didn't even realize how much they were helping.
I have a prescription for Tecfidera, that is pending some documentation, and should be filled either today or Monday. I am hoping that it helps.
I found some support groups on Facebook (Living with MS, Multiple Sclerosis Society) but some questions that I have and some of the things that are happening to me are not things that I want to post publicly on Facebook.
Anyway that's my introduction.

Jim

[lyndacarol]

I am 54 and my diagnosis was just confirmed Monday 8/8/16 and I am still in the throws of my initial attack. It started on 7/14 with a 'bit of numbness' in my right thumb and fore finger and progressed from there to where my right side from my ear to my hand 'feels weird'. It feels like I have a very tight wristwatch on and my shirt feels like it has lead weights. My motor skills are not up to par and I just feel 'weird'. I can't explain it at all.
My first MRI found a lesion in my C2 spine and the Neurologist said 'might be a tumor, lets give it a month and come back for another MRI' - then discharged me from the hospital (that's really simplified, there were many more tests). The symptoms got worse and after 10 days I went back to my PCP and she admitted me for three days of IV steroids. That's when my new Neurologist told us that she disagreed with the previous assessment - not a tumor, looks like MS. That led to a spinal tap where MS was confirmed.
The steroids seemed to bring back some strength but I still feel 'weird'. My 'reducing dose' steroid treatment ended three days ago and my symptoms are worse than ever. I didn't even realize how much they were helping.
I have a prescription for Tecfidera, that is pending some documentation, and should be filled either today or Monday. I am hoping that it helps.
I found some support groups on Facebook (Living with MS, Multiple Sclerosis Society) but some questions that I have and some of the things that are happening to me are not things that I want to post publicly on Facebook.
Anyway that's my introduction.

Jim

Welcome to ThisIsMS, Jim (JimboP).

I realize that your "bit of numbness" only began on 7/14 and your MS diagnosis was just confirmed on 8/8/16, making for a "fast, wild roller coaster ride."

Since MS symptoms are common to many conditions and MS is a diagnosis of exclusion (made only after the other more likely causes have been ruled out), I am amazed that all the testing could be done in one month's time. My journey from symptoms to diagnosis took 2 years; I have heard of one case that took 14 years!

Please don't be offended at my interest in your testing: (A vitamin D deficiency is just one of those conditions with symptoms similar to MS symptoms.) If a vitamin D test (the "25-hydroxy D") was done, will you share the actual test result number with us? (When I was tested in January, my result was 24 ng/mL, which is lower than the range recommended by most vitamin D experts today.)

[JimboP]

I don't mind sharing my results.
Having a hard time wading through all of these looking for a vitamin D test.
I was tested for Syphilis, Lyme Disease, Lupus and 'Neuro Myelitis Optica'.
These are the tests that contribute to the MS diagnosis, from my Spinal Tap:
IGG SYNTHESIS RATE CSF 41.3 mg/d - normal range <=8.0 mg/d
IGG/ALB RATIO CSF 0.56 - normal range 0.09 - 0.25
IgG Index 1.79 - normal range 0.28 - 0.66
Oligoclonal Bands, Number 17 - normal range Bands 0 - 1 Bands
OLIGOCL.BAN.CSF Positive
From my first MRI:
'There is a slightly expansile T2 hyperintense enhancing lesion within
the cervical cord posteriorly on the right at C2 measuring 5 mm
transverse by 5 mm AP by 6 mm cc. No evidence of epidural collection
within the spinal canal.'
This was followed by a CT scan of my entire body to exclude metastatic cancer, which was negative.

I don't know what else to do but accept the diagnosis of 2 Neurologists, but I am open to any more testing that they want to do as long as I never hear the words 'Spinal Tap' or 'Lumbar Puncture' again. Because that's not happening.

By the way maybe the vitamin D test results don't appear in my 'My Chart' because I switched hospitals (and medical groups) after my first hospital stay. They do have me on vitamin D3 + calcium and vitamin B12 too.

Jim

[lyndacarol]

I don't mind sharing my results.
Having a hard time wading through all of these looking for a vitamin D test.
I was tested for Syphilis, Lyme Disease, Lupus and 'Neuro Myelitis Optica'.
These are the tests that contribute to the MS diagnosis, from my Spinal Tap:
IGG SYNTHESIS RATE CSF 41.3 mg/d - normal range <=8.0 mg/d
IGG/ALB RATIO CSF 0.56 - normal range 0.09 - 0.25
IgG Index 1.79 - normal range 0.28 - 0.66
Oligoclonal Bands, Number 17 - normal range Bands 0 - 1 Bands
OLIGOCL.BAN.CSF Positive
From my first MRI:
'There is a slightly expansile T2 hyperintense enhancing lesion within
the cervical cord posteriorly on the right at C2 measuring 5 mm
transverse by 5 mm AP by 6 mm cc. No evidence of epidural collection
within the spinal canal.'
This was followed by a CT scan of my entire body to exclude metastatic cancer, which was negative.

I don't know what else to do but accept the diagnosis of 2 Neurologists, but I am open to any more testing that they want to do as long as I never hear the words 'Spinal Tap' or 'Lumbar Puncture' again. Because that's not happening.

By the way maybe the vitamin D test results don't appear in my 'My Chart' because I switched hospitals (and medical groups) after my first hospital stay. They do have me on vitamin D3 + calcium and vitamin B12 too.

Jim

First of all, thank you for sharing your test results. Please know that I have no medical background. But, like you, I find no listing of the 25-hydroxy D blood test in the test results you have posted.

I also find no mention of vitamin B12 testing either (The initial investigation of possible B12 deficiency usually includes 4 tests: #1 a serum B12 test, #2 an RBC folate test, #3 a serum homocysteine test, and #4 a methylmalonic acid test.).

And yet, if doctors have you taking vitamin D3 + calcium and vitamin B12, I assume someone tested for these nutrients, found the results to be low, and prescribed supplementation. I am curious to know all these test results. (By the way, MS patients are often found to be low in nutrients – not only vitamin D and B12, but also low in magnesium, iron, zinc, and others.)

Of course, you will accept the MS diagnosis of 2 neurologists. But, remember that all your symptoms are not necessarily the result of just one problem.

If you cannot find previous vitamin D and vitamin B12 test results, I suggest that you request your PCP to order them (They are simple blood tests, relatively inexpensive – for example, the 25-hydroxy D test is about $50-$70 and is usually covered by insurance.).

As for the amount of vitamin D3 you are taking, it may not be enough to raise your vitamin D to an optimal level. There is wide variability in response to a particular dosage among patients. Only repeated testing will verify that the patient has achieved the targeted level.

As for the form of B12 you're taking, the cyanocobalamin form is usually given by doctors in the US (it is the cheapest form, but it is not readily absorbed by the body – it must be decyanated by the body first); the methyl-cobalamin form is more readily absorbed and it is preferred by experts.

You may find the following article interesting:

Multiple sclerosis and vitamin B12 metabolism
Journal of Neurology, Neurosurgery, and Psychiatry, 1992
http://www.ncbi.nlm.nih.gov/pmc/article ... 0-0001.pdf

[ElliotB]

"Tecfidera, .... I am hoping that it helps."

Hi and welcome.

Not sure if you are aware but DMDs typically help only with preventing/reducing future attacks and will likely not help with existing symptoms although I had some minor symptoms stop within 24-48 hours of starting Copaxone.

[JimboP]

I have an appointment with my Neurologist Tuesday where I am going to try to get more info on what I can do to make my arm feel like it belongs to me. Also I am going to tell her that her staff sucks and if I leave one more message without a call back I will be finding a new Neurologist.

[JimboP]

Started on the Tecfidera last Thursday 9/1. First 'hot flush' almost made me call an ambulance.
Seems like some of my symptoms are decreasing. Could be in my head or maybe it's just time for them to start to go away.
I hope so anyway.