diff diagnoses?

[Mascha]

Hi,

For the past 1,5 years I have had several episodes with symptoms that could fit MS. I never made the link, because about half of those also fit a previous mechanical lesion in my lower back. The other half were symptoms in my face and eyes, though. During the most recent episode (numb toungue, lips and cheek and double vision, all one sided) an MRI of my brain and neck was done. My GP called me with the results, congratulating me that it wasn't a tumor as he had thought. However, they did see changes that looked like they were caused by inflammation. I asked wether those were in my brain or in my neck and he answered with "everywhere." He has sent my case to the neurologist and told me they will most probably take a lumbar puncture. I am waiting to be seen, but that could take up to 2 months (Sweden, it's all free, but non-acute diseases have longer waiting times).

I have started searching the internet (stupid me) and I really only can find MS as the most likely diagnosis. Are there any diff diagnoses with similar MRI imagery (inflammation lesions in brain and cervical spinal cord) that I have missed?

I'm ok with factual bad news. No need to sugar coat it. ;) It's the waiting time that's killing me at the moment.

Best regards,
Mascha (maybe a future community member)

[lyndacarol]

For the past 1,5 years I have had several episodes with symptoms that could fit MS. I never made the link, because about half of those also fit a previous mechanical lesion in my lower back. The other half were symptoms in my face and eyes, though. During the most recent episode (numb toungue, lips and cheek and double vision, all one sided) an MRI of my brain and neck was done. My GP called me with the results, congratulating me that it wasn't a tumor as he had thought. However, they did see changes that looked like they were caused by inflammation. I asked wether those were in my brain or in my neck and he answered with "everywhere." He has sent my case to the neurologist and told me they will most probably take a lumbar puncture. I am waiting to be seen, but that could take up to 2 months (Sweden, it's all free, but non-acute diseases have longer waiting times).

I have started searching the internet (stupid me) and I really only can find MS as the most likely diagnosis. Are there any diff diagnoses with similar MRI imagery (inflammation lesions in brain and cervical spinal cord) that I have missed?

I'm ok with factual bad news. No need to sugar coat it. ;) It's the waiting time that's killing me at the moment.

Best regards,
Mascha (maybe a future community member)

Welcome to ThisIsMS, Mascha. Wow! Are you a native-born Swede? Your English is excellent!

I wonder if nutrient testing has been done to date – deficiencies can be differential diagnoses for many neurological symptoms and conditions. Have you had a vitamin D blood test (the "25 hydroxy D" test)? Your GP should be able to do this. Do you have (or can you obtain) the actual test result number to share with us? Vitamin B12 testing? A magnesium test? Zinc?

In Sweden, the high latitude does not allow for adequate UVB rays, necessary to make vitamin D in the skin naturally. (By the way, vitamin D is anti-inflammatory. Also, vitamin D deficiency can present with brain lesions.)

There are neurologists who recommend that patients with neurological symptoms should reach and maintain a level of 80-100 ng/mL in their blood.

[Mascha]

Hi lyndacarol,

Thank you for your compliment. I am not native to Sweden. I am from the Netherlands. I'm doing a PhD in physiotherapy, however, which does help with the English medical jargon. ;)

I wonder if nutrient testing has been done to date – deficiencies can be differential diagnoses for many neurological symptoms and conditions. Have you had a vitamin D blood test (the "25 hydroxy D" test)? Your GP should be able to do this. Do you have (or can you obtain) the actual test result number to share with us? Vitamin B12 testing? A magnesium test? Zinc?

In Sweden, the high latitude does not allow for adequate UVB rays, necessary to make vitamin D in the skin naturally. (By the way, vitamin D is anti-inflammatory. Also, vitamin D deficiency can present with brain lesions.)

There are neurologists who recommend that patients with neurological symptoms should reach and maintain a level of 80-100 ng/mL in their blood.

I forgot to mention that before the MRI was done, the GP actually ordered blood work because vit deficiency was the first guess. I did not get a written report of that, but the GP said that there were no deficiencies. It showed a little heightening of inflammatory processes, but not enough to say that my symptoms were due to an inflammation at that moment. But I'm theorising that an inflammation behind the BBB might not give such strong results in a blood test? And that's why the lumbar puncture is needed? Not a doctor though, so what do I know.

I already take magnesium supplements due to the neurological problems from that earlier mechanical lesion in my lower back that I mentioned (and the magnesium worked wonders against the cramps I had! I can recommend it to anybody with cramps/spasms, wish I had known about it sooner).

It's good to know that vit D could still be the culprit though. Maybe the GP was content with lower levels than he should have been. I'm gonna see if I can get a hold of the report sooner than I get an appointment with the neurologist. Thanks!

Any other differential diagnoses?

[euphoniaa]

Any other differential diagnoses?

Hi Mascha, and welcome! Yes, there are many, many, many other medical conditions on that list. Here's one of the most extensive lists of differential diagnoses I've ever seen, that someone posted a while back. Settle in for a long read, though. It might even help you study your English medical jargon.

http://www.medmerits.com/index.php/arti ... lerosis/P8

Although pretty much ALL neurological conditions share similar symptoms and none are found ONLY in MS, this list also notes whether lesions & oligoclonal bands are found and how they differ from MS.

I might also add another of my favorite sites, "The Whole Brain Atlas"
( http://www.med.harvard.edu/AANLIB/home.html ), that shows how brain lesions differ from one illness to another. My first MRI of the brain & C-spine showed that it was jammed with so many MS-specific lesions(periventricular, Dawson's Fingers, black holes, etc.) I got an instant diagnosis, although they continued with a spinal tap, VEP, SSEP, and further testing...all of which confirmed the original, obvious dx.

It's good to check vitamin levels as well, but I'm concerned when posters are led to believe that serious MS/neurological symptoms and even brain lesions might be quickly cured by a big dose of vitamins...the research isn't quite there yet, and quality control of vitamins/supplements is lacking. I've stated time and again that I've personally had worse experiences from taking some vitamins/supplements than MS has ever given me! (Even the ones recognized as 'likely' helpful to MS.)

Also, keep in mind that a multitude of symptoms could signify multiple medical conditions. In my case, my age and other conditions are the likely cause of almost ALL of my current symptoms.

Good luck with your diagnostic journey and your studies and feel free to ask more questions!

[lyndacarol]

I forgot to mention that before the MRI was done, the GP actually ordered blood work because vit deficiency was the first guess. I did not get a written report of that, but the GP said that there were no deficiencies. It showed a little heightening of inflammatory processes, but not enough to say that my symptoms were due to an inflammation at that moment. But I'm theorising that an inflammation behind the BBB might not give such strong results in a blood test? And that's why the lumbar puncture is needed? Not a doctor though, so what do I know.

I already take magnesium supplements due to the neurological problems from that earlier mechanical lesion in my lower back that I mentioned (and the magnesium worked wonders against the cramps I had! I can recommend it to anybody with cramps/spasms, wish I had known about it sooner).

It's good to know that vit D could still be the culprit though. Maybe the GP was content with lower levels than he should have been. I'm gonna see if I can get a hold of the report sooner than I get an appointment with the neurologist. Thanks!

Any other differential diagnoses?

If your GP considered a possible vitamin deficiency, he may have included initial testing for B12 deficiency in the blood work ordered. If not, you may wish to request it since your symptoms may also be consistent with vitamin B12 deficiency. In the US, thorough initial testing should include 4 tests: #1 a serum B12 test, #2 RBC (red blood cell) folate test, #3 a serum homocysteine test, and #4 a methylmalonic acid test.

I believe the newer (considered to be more accurate) HoloTc (HoloTranscobalamin) test has replaced the outdated serum B12 test in Norway (I don't know which test is used in Sweden.).

With both the serum B12 test and the 25-hydroxy D test, a consensus of experts thinks the standard reference ranges are set too low. In the US, many labs use a value around 200 pg/mL as the cutoff for a B12 deficiency (my lab used 213); in Japan, a value below 500 pg/mL is considered B12 deficient and is treated as such. I have no idea of the practice in Sweden.

As for vitamin D… The California-based group, GrassrootsHealth (http://www.GrassrootsHealth.net) and the world-renowned vitamin D experts associated with it recommend minimum vitamin D levels between 40-60 ng/mL. It may well be that your "GP was content with lower levels than he should have been" (but, again, I don't know the reference ranges used in Sweden).

In my opinion (I have no medical background), it is necessary to obtain your actual test numbers and compare them to current recommendations.

As for other possibilities… Depending on your symptoms, I assume you have been tested for problems with the thyroid, liver, kidney functions, antibodies related to celiac disease (or a lesser degree of gluten sensitivity).

[Mascha]

Thank you all very much for your input. Especially the MedMerits list was very helpfull.

Yes, all those tests have been done, lyndacarol (accept for Cealiacs).
I found the cut off ranges used in Sweden, but they use different units. >50 nmol/liter is considered sufficience, so my values were over that. I found another article, which presented a study that found that most people in Northern Sweden (unexpectedly) reach those values. The study was performed during the winter months, which made the results even more unexpected.

I'll try and wait a bit more for the neurologist.

[lyndacarol]

I found the cut off ranges used in Sweden, but they use different units. >50 nmol/liter is considered sufficience, so my values were over that. I found another article, which presented a study that found that most people in Northern Sweden (unexpectedly) reach those values. The study was performed during the winter months, which made the results even more unexpected.

I'll try and wait a bit more for the neurologist.

Divide by 2.496 to convert nmol/L to ng/mL.

There is controversy over the appropriate reference range for vitamin D. The Institute of Medicine (IOM) recommends 20 nanograms per milliliter (ng/ml) of serum concentration of 25-hydroxy vitamin D as an adequate level. Scientists established this years ago for bone health when they determined that a minimum of 20 ng/mL (50 nmol/liter) was necessary to avoid rickets. The emerging recommendation today is for much higher levels, which have been found to have effects on many other conditions (http://www.grassrootshealth.net/media/d ... -24-12.pdf).

In Sweden, as you have found, ">50 nmol/liter is considered sufficient." But, is it? 50 nmol/liter equals 20 ng/mL – in my opinion, this cut off for minimum is set too low; and, unless your values were significantly higher than 50 nmol, you may still be deficient/insufficient in vitamin D. This is something to discuss with your doctor. Vitamin D toxicity has not occurred at serum levels as high as 200 ng/mL (500 nmol/L).

I suspect the following is the study you have referenced (but, I ask, "What qualifies as "adequate?"):
Adequate vitamin D levels in a Swedish population living above latitude 63° N: the 2009 northern Sweden MONICA study
http://www.circumpolarhealthjournal.net ... d-shared=0

"Conclusion. The large majority living close to the Arctic Circle in Sweden have adequate D3 levels even during the second half of the dark winter. Subjects with D3 deficiency were uncommon but insufficient levels were often found among young men."

There are many interesting studies (I recently read there have been as many as 34,000 papers/studies), such as:
Vitamin D deficiency among northern native peoples: a real or apparent problem? (2012)
http://www.circumpolarhealthjournal.net ... view/18001

Your plan to wait for the neurological appointment seems logical – it gives you time for research and reflection.

[Mascha]

So, i have finally been called in for my appointment which will be on Tuesday.

The nurse said they have planned for more blood work and a lumbar puncture on that day. She also said the specialist will "talk to you about the diagnosis, but it won't be super final until we get the tests back a few weeks later." When I asked directly she was of course not allowed to tell me anything until I see the doctor.

I thought her wording was interesting. And after the research I've done so far, I'm prepared to get the MS diagnose. I don't mean to hurt anybody, but I am (in a weird way) actually looking forward to getting some answers. I hope I'll get them.