How constant are MS symptoms?

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Fonzie
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How constant are MS symptoms?

Post by Fonzie »

Hi,

I haven't been diagnosed yet and I've had many symptoms that sound like MS. Some of the symptoms happen on a regular basis for a while, disappear, and then come back, some symptoms are always there and get progressively worse, and others just happen every once in a while. I understand that the most common form of MS is relapse-remitting, but some of my symptoms go away for only a few days before coming back (and in the meantime, I usually have other symptoms).

Is this consistent with MS? What were your experiences like?

Thanks in advance :)
Youarethecure
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Re: How constant are MS symptoms?

Post by Youarethecure »

MS is different for everyone.

Literally EVERYTHING is a variable. The symptoms, severity level, timing, progression, etc all vary.

Basically, what you are saying could be MS but there are a lot of other things to rule out first. Have you been to a doctor?
Fonzie
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Re: How constant are MS symptoms?

Post by Fonzie »

Thanks for your reply! Yes, I've been to two different neuros. I had an MRI of my brain (normal), EMG/NCS (normal), and a bunch of bloodwork (Lyme, Vitamin B12, Vitamin D, etc) done. I did have a Vitamin D deficiency, and I've gotten my levels back to normal and I'm still having symptoms. B12 was normal, slightly low.

The second neuro I saw originally said my slightly low B12 level could possibly explain some of my symptoms, but not all of them, so he wanted me to do a spinal tap. After he saw my completely normal MRI he did a 180, saying that a spinal tap would be overkill, and that it must all be due to "nutritional deficiencies". He had me do some other bloodwork, which I don't have the results for yet.

I understand that some people do have B12 deficiency symptoms when they're technically not deficient, but as far as I know if this were really the cause it would've damaged my peripheral nerves, and my EMG/NCS was completely normal so that doesn't seem to make sense.

I'm getting extremely frustrated because I've had about 20 different symptoms these past few months (and also a few years ago I had a similar "episode", during which I had something that sounded very much like the MS hug), and I've read about people who had normal brain MRIs and still had MS, so I don't get why they won't just have me do a spinal tap.
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Scott1
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Re: How constant are MS symptoms?

Post by Scott1 »

Hi,

Were you tested for mycoplasma and chlamydia?

Regards
Youarethecure
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Re: How constant are MS symptoms?

Post by Youarethecure »

How long ago was the testing? How long ago for the MRI? Have you only done 1 MRI?
Fonzie
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Re: How constant are MS symptoms?

Post by Fonzie »

I'm not sure, I just had some more tests done and they might've been included. I just checked the symptoms though and I don't seem to have any of them (except tiredness). Either way I'll ask my neuro next time!

Some of my symptoms are:
-extremely sharp pain in rib area that didn't hurt when I touched it, only when I breathed in, coughed, or sneezed (only happened once)
-smelling smoke that's not actually there
-twitching (started with one eye and now it's all over)
-pins and needles, numbness
-postural fingers tremors which get worse with heat, sometimes my arm as well
-finger/hand pain (probably one of my worst and most constant symptoms)
-mental and physical fatigue
-mixing up words
-memory problems
-lightheadedness
-muscle weakness
-difficulty walking, especially after exercising
-shooting pain in my face when I'm hot
-nocturia, bladder spasms
-flashes of light in eyes (only happened once recently, but it happened pretty often when I had symptoms 3 years ago)
Fonzie
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Re: How constant are MS symptoms?

Post by Fonzie »

The MRI was done 1.5 months ago, and it was my only MRI. The EMG/NCS were done just a few days ago.
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lyndacarol
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Re: How constant are MS symptoms?

Post by lyndacarol »

Fonzie wrote:I've been to two different neuros. I had an MRI of my brain (normal), EMG/NCS (normal), and a bunch of bloodwork (Lyme, Vitamin B12, Vitamin D, etc) done. I did have a Vitamin D deficiency, and I've gotten my levels back to normal and I'm still having symptoms. B12 was normal, slightly low.

The second neuro I saw originally said my slightly low B12 level could possibly explain some of my symptoms, but not all of them, so he wanted me to do a spinal tap. After he saw my completely normal MRI he did a 180, saying that a spinal tap would be overkill, and that it must all be due to "nutritional deficiencies". He had me do some other bloodwork, which I don't have the results for yet.

I understand that some people do have B12 deficiency symptoms when they're technically not deficient, but as far as I know if this were really the cause it would've damaged my peripheral nerves, and my EMG/NCS was completely normal so that doesn't seem to make sense.

I'm getting extremely frustrated because I've had about 20 different symptoms these past few months (and also a few years ago I had a similar "episode", during which I had something that sounded very much like the MS hug), and I've read about people who had normal brain MRIs and still had MS, so I don't get why they won't just have me do a spinal tap.
Welcome to ThisIsMS, Fonzie.

I have an interest in vitamin B12. If you do not think it would be sharing too much personal information, would you share your actual B12 level number?

There is much controversy over lab standard levels for B12 in the US. Most labs here consider that levels under 200 pg/mL are deficient; as an example, in Japan, the cutoff point is 500 – in other words, if your level is 300 or 400 in the US, it is considered just fine; the same level in Japan qualifies as a deficiency and is treated. Many experts are now saying that our standard ranges are outdated and set too low.

I do not understand why your second neuro would not test further into your B12 level if he suspected that it could "possibly explain" your symptoms. Ask for #1 a serum homocysteine test, #2 a methylmalonic acid test, and #3 serum or RBC folate test for starters. The outdated "serum B12" test alone is not adequate to reliably detect a B12 deficiency. (The newer, more reliable HoloTc test is not yet available everywhere and may not be an option in your area.) All of these tests are considerably less expensive than the usual neurological tests (and a lot easier than a spinal tap!). By the way, there is no definitive test for MS – not even a spinal tap.

It is estimated that 40% of the American population has suboptimal B12 levels. It seems logical to me to be absolutely sure that this is not the cause of your problem.
Fonzie
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Re: How constant are MS symptoms?

Post by Fonzie »

Thanks lyndacarol! :)

Of course. I've had B12 checked 3 times in the past 4 months, and my levels were:

April
B12 420 pg/mL B12
Methylmalonic Acid 400nmol/L
Homocysteine Serum 12.0 umol/L

June
B12 248 pg/mL
Folate 13.5 ng/mL

July
B12 377 pg/mL

I started taking multivitamins that included 6 mcg of B12 shortly after the June blood test. Now I've been taking additional supplements (2000 mcg) for the past week, and my new neuro wants me to do injections as well. I will definitely ask him to test further - thank you for mentioning that!
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lyndacarol
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Re: How constant are MS symptoms?

Post by lyndacarol »

I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN, & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their new book, What's Wrong with My Child?); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab):

Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"

Fonzie wrote:I've had B12 checked 3 times in the past 4 months, and my levels were:

April
B12 420 pg/mL B12
Methylmalonic Acid 400nmol/L
Homocysteine Serum 12.0 umol/L

June
B12 248 pg/mL
Folate 13.5 ng/mL

July
B12 377 pg/mL

I started taking multivitamins that included 6 mcg of B12 shortly after the June blood test. Now I've been taking additional supplements (2000 mcg) for the past week, and my new neuro wants me to do injections as well. I will definitely ask him to test further - thank you for mentioning that!
Your B12 levels are below the 550 recommendation in their first book, Could It Be B12? An Epidemic of Misdiagnoses by Pacholok and Stuart and certainly below the 1000 recommendation in their second book (possibly available at your library): http://b12awareness.org/could-it-be-b12 ... diagnoses/

On page 11:
There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury.
On page 140 of their newer book:
Based on two decades of clinical experience, we believe that serum B12 levels need to be 1,000 pg/mL or more for healthy brain growth and development in infants and children. We recommend the same level for optimal brain and nervous system health and prevention of disease in adults.
Bear in mind:
Taking vitamin B supplements before testing will skew test results.
A person can have adequate B12 in the blood, but still have a B12 deficiency in the tissues (if the serum B12 is carried on the wrong transporter molecule to reach the tissues – ONLY the transcobalamin II transporter can deliver B12 to the cells/tissues).
The B12 injections given in doctors' offices in the US are in the form of cyanocobalamin, which is not readily used by the body and must be decyanated first. The methylcobalamin form is more bioavailable, but can be obtained only through a compounding pharmacist; however, hydroxocobalamin is more readily available to the body than cyano; and hydroxocobalamin can be obtained, by prescription, through a regular pharmacy.
B12 is a water-soluble vitamin; it is non-toxic; it has no side effects; it is inexpensive. If your new neuro is willing to give a trial therapy of B12, it will not harm you (any amount not used by the body will be flushed out in urine). In fact, on page 140 of What's Wrong with My Child?:
And therapeutic trials should still be provided for symptomatic patients, even if blood/urine results are within the reference range.
Fonzie
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Re: How constant are MS symptoms?

Post by Fonzie »

Thank you for the information - I haven't had time to watch the video yet but I will definitely watch it as soon as I have the chance!
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