Long term symptoms but an answer maybe coming...

[nikkikl]

Hi everyone. New here poking around to get some further reading going. Sorry in advance for the long post! I'm about to have my 2nd MRI next week for brain and thoracic spine with and without contrast. The possible diagnoses the neuro has written on the order is 'myelitis' but she explained she was mainly looking for MS as my last MRI about 5 years ago found, we think, myelitis. I'll explain. I've been having symptoms for around 10 years and had been back and forth to the GP in the UK (where I am from) with various benign symptoms that I thought and the doc thought could always be rationally explained. At the time, I was dealing with Health Anxiety after my Mum passed away from cancer so anything I felt, I feared was cancer. Anyway, the first absolute definite nerve-related thing was when I noticed that the whole of my torso on one side was numb. I could literally draw a line down my tummy and the numbness was just on one side. It went away after a few weeks, then came back on the other side a month or so later. And so I went to the doctors again and he had no clue. I was sent to an NHS neurologist who said he had no idea what it might be and maybe it was Lupus but he just shrugged his shoulders. I had blood tests. All normal. The numbness went away so I forgot about it. Then my legs started becoming uncomfortable, tingly, irritating. So the doc checked the circulation - normal again. Then the numb torso on one side came back along with random dizziness. My ex-husband had private health care so my doc suggested I see a private neuro. I was terrified - and MRI was my worst nightmare as I was convinced they would find me riddled with cancer. I had no cancer but he did say he found 'some inflamed spots along the spinal cord but don't worry, it will fade but will come and go'. He never said it was myelitis, he literally said no more than that. He didn't give it a name. I was happy because he didn't find cancer and skipped away feeling happy again. Several more attacks of numbness but by this time I was used to them and paid no attention. So then I moved to the USA three years ago. Very shortly after the move, the numbness returned with the tingly legs. I saw a chiropractor who did the usual chiro things over a few weeks and I felt it had all resolved. Not so. It came back again and the legs were getting worse, the dizziness worse than ever. So I then discover I was pregnant and the symptoms all got better - nothing was bothering me! Relief, I thought. Baby arrive two months early via emergency C-Section and then the symptoms came back so bad I have been crushed by them for the last four months. My right leg was the worst - I felt like it was massively swollen and that I had a huge invisible boot on that made my foot tingle and burn. My knee also felt like it was badly swollen, my C-Section scar felt like it was about to burst, the saddle area was numb, the torso tingles had returned and the dizziness was so bad I was terrified to carry my baby around. My muscles feel so weak. So here I am today, on the edge, hopefully, of some answers and some drugs to help me. The legs feel a little better, the numb torso is a little better, the dizziness comes and goes for no apparent reason, I am weaker than ever and I am SO freaking tired I could sleep for a week. The eyesight suddenly deteriorated. My brain is frequently confused. As the baby is now 7 months old, he is no doubt wearing me out, but I am actually looking forward to the MRI next week so I can lay down in peace and quiet for an hour or two! Does this actually sound like MS? From what I have read about myelitis, you get one attack then any afterwards are more or less considered MS?

[NHE]

Hi Nikkikl,
Welcome to ThisIsMS.

I am actually looking forward to the MRI next week so I can lay down in peace and quiet for an hour or two!

MRIs are anything except quiet! The techs typically give you ear plugs. However, the rhythm of the noise is somewhat relaxing.

[Youarethecure]

Welcome to the site, you will find a lot of info on here that can help you.

If you do get diagnosed there is a lot you can do against it. Medication, diet, exercise, nutrition, and your lifestyle can all make your quality of life better.

And may I also add sleep is VERY important. I normally can stroll around asymptomatic but when I don't sleep enough I get itchy, fatigued, brain fog, etc. I have learned this recently too lol.

I hope the best for you,

Chris

[nikkikl]

Thanks, guys. I have to say, my diet is pretty much non-existent right now and the nutritious value of what little I do eat is poor. I need to address that with more than the vitamins I take. Still looking forward to some baby-free time during the MRI though

[nikkikl]

Sooooooo. MRI yesterday, neuro today. Lesions found in my brain and down the spinal cord as suspected. Done a huge stack of blood tests today, all of which are expected to be normal (touch wood) and I was immediately sent for the first of 5 days worth of steroid infusions. Assuming the bloods are ok, I have MS. The answer I've pretty much suspected for quite some time.

[Youarethecure]

ughhhhh I hate steroids !!

Well, welcome to ground zero. I was there early this year my self. There is a lot to wrap your brain around but once you do hopefully you can see that MS is not the end of the world. Also there is a lot you can do to fight against it as I listed above.

Are you going to do medication? You should decide which one you want to be on because there are many. Your doctor should leave the decision up to you and not push you in any certain direction. Now, he may have his preferences but you should do your research and figure out which one is right for you.

This is a great website to learn the ins and outs of doing the proper things to fight against MS and its progression. The information and the members here are invaluable to someone who is new to all this and WANTS to learn everything.

Best wishes,

Chris

[jimmylegs]

hi nikki, welcome to the forum

you might find the topic here (not too much - two pages of posts) to be interesting reading:
http://www.thisisms.com/forum/general-d ... 19575.html

[nikkikl]

Thanks guys the neuro wanted to try to pull the current symptoms in to line as I have a 7 month old baby so anything that might give faster relief will help enormously, hence the steroids. She's going to discuss medications following the blood results and after the steroids to see how they helped. I've got to be careful on meds as I am real sensitive to them, which is a good thing in some ways as I usually need the lowest dose. The flip side is that side effects, when I get them, can be brutal. The steroids so far have been fine, and I'm told it was a high dose so should be interesting by Sunday as I may be a blubbering wreck lol

I'm reading as much as I can, these forums are a gift!

[jimmylegs]

no probs - you're definitely in a good place for information

here are some more links you might find interesting. these are related to interpreting nutritional bloodwork, in case the docs happened to be looking at any nutrients of concern for ms patients as part of all your tests done today

1 page of posts: http://www.thisisms.com/forum/natural-a ... 18788.html

2 pages: http://www.thisisms.com/forum/natural-a ... 24517.html

1 short page: http://www.thisisms.com/forum/regimens- ... 21170.html

[nikkikl]

I see mention in other posts of the blood results. I can post those here but I have a regular Dr appointment on Monday so if any are missing, I can ask him to order them. So today I had;

cbc/dif/plt
Comp metabolic
ana screen
Anti DNS-dna
ss-a/ro & ss-b/La IgG antibodies
Angiotensin converting enzyme
Anca panel for vasculitis
B12
Folate
TSH (s)
Lymes Ab titer (mcdh)
Sed rate / Erythrocyte
C-reactive protein

Hoping to get the results tomorrow or Friday

[NHE]

Hi nikkikl,
It's good to see that they're testing both B12 and folate. If your having neurological symptoms, then your value for B12 should be between 500 and 800 pg/mL. The standard laboratory range for B12 is much too low. It runs around 200 - 800 pg/mL. One can test above 200 and be told that they're "normal," but still be deficient. B12 deficiency can mimic MS including brain and spinal lesions as well as white matter atrophy. Unlike MS, a B12 deficiency is very treatable. Lastly, ask your doctor for a copy of your test results for your records. Many of my records from when I was diagnosed in 1999 are long gone. It's frustrating now when I go see a new doctor.

NHE

[jimmylegs]

the poor status assessment situation (whether poor interpretation or failure to test, period) is the same for all of the nutrients of concern in ms. in general ranges are off, low to mid normal is often deficient/treatable, high normal is associated with health.

b12 is the oldest best known nutritional differential dxs for ms, so it is pretty typical to see that and folate on a list of preliminary tests. it is true that b12 issues are treatable *if caught early*. for years prior to dx i had symptoms that resolved fully when i took b12 supplements, but the point came when that no longer worked and i now have permanent damage. if i had understood the kind of fire i was playing with at the time, i would have taken all my essential nutrient requirements far more seriously.

since dx i've learned the critical importance of balance and interactions between nutrients. for example i used to react badly to folate in b complex supplements, but since correcting levels of many other nutrients, my system can deal with folate properly and i get no side effects. i used to have horrible symptoms of mag deficiency from excessive and unbalanced d3 intake, but that was something that could fortunately be corrected as well.

i'll look forward to seeing your early test results. i second nhe's advice re obtaining your own copy of the results. for one thing, being told levels are 'normal' is not enough detail, as we've touched on above. also, some of your first non-nutrient results may give us early hints about nutrients as yet untested. for example crp is inversely correlated w serum magnesium so we'll be able to check if your crp levels reflect desirable mag status based on related research.

if you are developing a list of requests to take to the doc based on what you've read here, feel free to post, to make sure the details are right. it's important to be comparing apples to apples, devil is in the details, etc

[nikkikl]

So I have some of the blood results but some had to be sent to the Mayo Clinic as they are too specialized for our hospital to deal with. I'll list out what I do have, sorry if there are irrelevent results included, I'm not sure what is useful and what isn't.

WBC 7.2 K/uL
RBC 4.47 M/ul
HGB 12.9 g/dl
HCT 38%
MCV 85 fL
MCHC 31%
RDW This one is grayed out for some reason
Platelet Count 250 K/uL
Neutrophils 5.3 K/uL
Neutrophils% 73.8%
Lymphocytes 1.2 K/uL
Lymphocytes% 16.5%
Monocytes 0.3 M/uL
Monocytes% 3.9%
Eosinophils 0.2 K/uL
Eosinophils% 2.9%
Basophils 0.2 K/uL
Basophils% 2.9%
RBC Morphology - Normal
Sed Rate 17 mm/hr

Sodium 137 mmol/L
Potassium 4.1 mmol/L
Chloride 105 mmol/L
Bicarbonate level 24 mmol/L

BUN 8 mg/dl (L)
Creatinine Serium 0.7 mg/dL
GFR non African American, Calc 91 mL/min/1.73m2 (this has a star next to it)
Calcium 9.4 mg/dL
Alkaline Phos 54 U/L
Bilirubin Total 0.7 mg/dL
AST/SGOT 10 U/L
ALT/SGPT 9 U/L
Total Protein 6.8 g/dL
Albumin Assay 4.4 g/dL
B12 - also greyed out for some reason, I think it says 786 and has a star
Glucose Assay 85 mg/dL

TSH Sensitive 0.65 uIU/ml

Anti Nuclear Antibody - NEGATIVE
Anti DNS (DS) - NEGATIVE dils
C-Reactive Protein <0.2 mg/dL

[jimmylegs]

ok just starting with the first starred one GFR non African American, Calc
91 mL/min/1.73m2
here are a couple dtls:
http://www.renal.org/information-resour ... RzVvm.dpuf
"eGFR is estimated Glomerular Filtration Rate, usually based on serum Creatinine level, age, sex, and race. The most widely used method for this is the abbreviated MDRD equation, as it has proved the most robust and accurate (see further info at foot of page). Normal GFR is approximately 100mls/min/1.73m2
Important cautions about eGFR
It is only an estimate. A significant error is possible. eGFR is most likely to be inaccurate in people at extremes of body type, for example malnourished, amputees, etc. See Race, below. It is not valid in pregnant women or in children (see Age, below)."
I can't contribute much more than that on gfr just now. renal nutrition research is challenging. mostly reactive related to folks already on dialysis.

[jimmylegs]

previous discussion on potassium:
http://www.thisisms.com/forum/undiagnos ... ml#p220550

an interesting look at sodium and potassium in healthy controls vs heart disease patients
http://onlinelibrary.wiley.com/doi/10.1 ... 282.x/full
Serum Sodium (mmol/L)......141 ± 0.441......137 ± 1.04 0.0169*
Serum Potassium (mmol/L)......4.3 ± 0.115......4.05 ± 0.114 0.137

although Na and K are both higher in the healthies, the RATIO of Na to K is lower in healthy ppl compared to controls ie 32.79069767 vs 33.82716049
your Na:K ratio is closer to the heart patient group's 33.41463415

i'll be back with more later have to run for now.