Questioning diagnosis

[Blue2014]

Hi everyone! I am a 42 year old female who just received a diagnosis of multiple sclerosis. I am concerned that the diagnosis is not correct especially since it was made by a neurologist who does not specialize in MS. My symptoms started back in 2008 with just headaches and fatigue. My family doctor ordered an MRI of the brain and an arachnoid cyst was the only abnormality detected. Went to see neurosurgeon upon recommendation of family doctor and he said that these symptoms were likely from the cyst and that I could have surgery to drain the cyst or just monitor the cyst if I had any concerning change in symptoms to come back and see him. Then in 2013 I start experiencing positional dizziness, no longer having bad headaches, tinnitus, increased fatigue and some minor balance problems occasionally. I finally get around to seeing the neurosurgeon again figuring these symptoms are cyst related and when the results from the MRI come in the report stated that there were several new inactive lesions in the juxtacortical and periventricular areas the arachnoid cyst has not changed in size or location.Neurosurgeon states that he still believe symptoms are cyst related but that I should go to see a neurologist as well. I go to see the neurologist. During the visit with the neurologist he states that he thinks that these lesions are likely MS and orders MRI of brain, cervical and thoracic spine and a lumbar puncture. The MRI of the brain had the same result as the previous one several inactive lesions. Lumbar puncture tests were all normal but one oligoclonal band was found in my CSF but not in my blood. The MRI of cervical spine revealed reversal of normal cervical lordosis, mild disc desiccation, mild neural foraminal stenosis and a small left paracentral disc protrusion with thecal sac, no lesions detected. Thoracic spine MRI was normal no lesions detected. Since getting the lumbar puncture I have had a new onset of intermittent tingling in both arms, hands and fingers along with some tingling in one leg. I am concerned that at least some of my symptoms are related to an accident I was involved in back in 2012. Since the accident I have had difficulty with stiffness and cracking of the neck which may well be responsible for the cervical spine results as well as the tingling in arms and hands. When I inquired of the neurologist if this could be responsible for my symptoms he stated no that it was just arthritis and that I needed to focus on the bigger problem MS. He then states that he wants to start me on medications immediately and gave me information and a release for copaxone. I am very uncomfortable with this diagnosis at this point. This doctor spent maybe twenty minutes with me in a total of two visits and was able to diagnose me with MS. I have decided not to start the medication until I seek a second opinion which looks like it is going to be at least six months away. Can anyone offer me any insight into this experience? Am I just in denial or am I being rational? I really just feel like I should be sicker than I am to get an MS diagnosis. Thank you everyone.[/size]

[ElliotB]

Your decision to get a 2nd opinion from a MS specialist is a good one, and your best course of action under the circumstances. Please let us know what happens. You should try to get an appointment faster, because if you indeed have MS and want to go on a DMD like Copaxone (I take it), you want to start it right away.

"This doctor spent maybe twenty minutes with me in a total of two visits and was able to diagnose me with MS."

I was diagnosed in one visit in less time... Quality vs. quantity! My first neurologist who was not a MS specialist spent a lot longer with me and did a lot of tests and concluded I did not have MS.

[Youarethecure]

I agree, definetly get a second opinion from a specialist. Try and push your appt sooner as well. Call the office and say another neurologist diagnosed you with ms recently and I bet the office will schedule you sooner.

I also take copaxone and was diagnosed 9 months ago.

best of luck to you.

[NHE]

Hi Blue2014,
Welcome to ThisIsMS. MS is a diagnosis of exclusion. In effect, there are many conditions which can produce symptoms similar to MS so these must be eliminated as possibilities before the diagnosis can be made. One of these conditions is vitamin B12 deficiency which can cause everything from lesions visible on MRI to white and grey matter atrophy and their associated neuropathies. I encourage anyone facing a potential MS diagnosis to get a set of blood tests to check for B12 deficiency. You may wish to have a look at the following thread for more information.

http://www.thisisms.com/forum/natural-a ... 24857.html

[Blue2014]

Thank you everyone for your responses. I was able to get an earlier appointment in October with another MS specialty center and I am on the wait list for an earlier appointment at the center I had a six month wait for. I am feeling relieved that I will hopefully be able to get a definative answer much sooner. I have had my Vitamin B12 level checked twice this year and both times it was within normal limits so that has been eliminated as a possibility.

[jimmylegs]

hi blue. may i ask what your levels were? normal limits are chancy. max and min levels are poorly established and docs aren't adequately trained in nutrition. there's plenty of research on this educational deficit in the medical profession.

also b12 is the flavour of the month around here, and there are a whole constellation of nutrients which are known to be low normal in chronic disease patients, including those with ms, while levels are high normal in healthy controls.

some tests (with target levels) to consider here http://www.thisisms.com/forum/introduct ... ml#p226358

[Blue2014]

Jimmy, My Vitamin B12 levels were 471 pg/ml and 592 pg/ml. Normal according to the lab reports is considered to be between 211-950.

[jimmylegs]

the normal range does vary lab to lab, and personally i have seen 500 pg/ml recommended in the older literature as a lower cutoff to prevent hypocobalamin-related impairment according to non-hematological criteria. that is just one researcher's suggestion, but even by that weak standard your level looks pretty all right. personally my levels at dx varied from the low 200s to undetectable, so you are in much better shape.

here are some b12 and related numbers in controls and patients (with and without vitiligo, because a half decent array of related tests were conducted and compared in this case)

test.................................................................controls....................patients
Homocysteine, mmol ⁄ LL, median (IQR)...............9.4 (5.5–17.0)..........11.4 (4.6–55.4) < 0.01
Holotranscobalamine, pmol ⁄ L, median (IQR).... 114.9 (22.1–489.5)......72.1 (12.6–321.2) < 0.001
Vitamin B12, pg ⁄ mL, mean ± SD.....................316.5 ± 152.0.............250.6 ± 112.4

so just comparing your b12 status to the controls in this study, at 471 you're well above 1 SD above the controls mean, and at 592 you're headed for 2 SD above. and even your lower 471 level is higher than approx 97% of the patient group's levels (eg 2 SD above 250, or ~475).

here's another set of study data grouped by MMA quartile (in pmol/L so to get the numbers in pg/ml you have to divide by 0.738):

http://www.clinchem.org/content/48/11/2064.full.pdf
test............................quartile 1.............quartile 2.............quartile 3.............quartile 4
MMA, nmol/L...............139 (95–168).......213 (176–265).....326 (269–419)......691 (456–2039)
HCY, mol/L..................10.8 (6.3–18.0).....12.1 (6.7–19.2)....13.0 (8.8–21.....15.4 (9.3–31.0)
holoTC, pmol/L.............63 (19–300).........41 (21–157).........34 (11–94)...........24 (2–48)
Vitamin B12, pmol/L....274 (167–609)*.....240 (164–461)......204 (134–372)......189 (132–294)

*"Exclusion criteria included recent myocardial infarction (3 months), acute diseases, and vitamin usage."

so the absolute highest unsupplemented b12 level seen in this study would be 609 pmol/L or 825 pg/ml, which according to the exclusions listed does not rule out potentially elevated b12 levels due to chronic illness.

for comparison, a study looking at b12 status in groups of liver disease patients

Serum vitamin B12 levels as indicators of disease severity and mortality of patients with acute‐on‐chronic liver failure
test................patient group A.........patient group B.........patient group C
......................(<1200)...................(1200-2000).............(>2000)
B12 (pg/ml)....821.8±142.2.............1537.1±282.7..........3643.0±873.3

(unfortunately no MMA or HoloTC done in that study though)

and all that is without any examination of interactions between b12 and other nutrients, which would provide additional interesting insight.

curious if you got a chance to check out the other link re other nutritional tests useful for those concerned about chronic illness?

[NHE]

the normal range does vary lab to lab, and personally i have seen 500 pg/ml recommended in the older literature as a lower cutoff to prevent hypocobalamin-related impairment according to non-hematological criteria. that is just one researcher's suggestion, but even by that weak standard your level looks pretty all right. personally my levels at dx varied from the low 200s to undetectable, so you are in much better shape.

Japan uses a normal range for B12 of 500-1300 pg/mL.

http://www.ncbi.nlm.nih.gov/pubmed/3398357

[jimmylegs]

yep i had posted that tidbit a couple weeks after i joined the forum.. http://www.thisisms.com/forum/general-d ... tml#p14161 and the suggestion mentioned in that 2006 post, and in the recent post above, was contained in a letter, in a journal supplement, that stated several countries including japan used a lower cutoff of 500 - however i hadn't been able to find that cutoff anywhere in official guidelines. it seems likely that the letter was referring to studies like mitsuyama & kogoh - that study is a good find. of course ranges identified in individual studies are not universally identical to national health guidelines.

[Blue2014]

Well went to see a MS specialist today and they were in agreement with the neurologist that I saw. So it is confirmed now that I do have MS. I will be starting on Copaxone soon.

[Youarethecure]

Well at least you know now.

Learn all you can about what you can do against it. Diet, nutrition, exercise, medication, and life style all play big roles.

This takes some adjustments and getting used to but it is not the end of the world.

I hope the best for you,

Chris

[daverestonvirginia]

I received my dx ten years ago at 45. I could not agree more that diet, nutrition, exercise, medication, and life style all play big roles. Still on copaxone after 10 years, best bet diet, lots of exercise, vitamin d. Feel great, and I agree with Chris again, not the end of the world. Dave