Frustrated

[Bellalisimo]

My son was told he may have MS and was given a 4 day dosage of steroids but we havent heard back anything from the neurologist, how long does this diagnosis take, steroids are done over 2 weeks ago and has not been perscribed anything else! Feeling frustrated here!

[ElliotB]

I can understand your frustration. What type of tests were done? What kind of symptoms did your son have and did the Steroids help? How old is he? Is there a history of MS in your family?

Why not call the doctor's office and ask them the questions you posted here?

[Bellalisimo]

He has had 3 Mri's , blood tests, no MS anywhere in the family, when we call the neurologist they say we will call you back when all the blood work is in. He has trouble with his right leg where he just drags his foot, trouble with going up stairs and down and just plain walking, right hand is bad too but not his arm, no vision problems either.

[Bellalisimo]

Steroids did nothing for him, he is 27 and about to become a new father for the first time and wonders how he will raisw his daughter being like this

[ElliotB]

What were the results of the MRIs?

[lyndacarol]

He has had 3 Mri's , blood tests, no MS anywhere in the family, when we call the neurologist they say we will call you back when all the blood work is in. He has trouble with his right leg where he just drags his foot, trouble with going up stairs and down and just plain walking, right hand is bad too but not his arm, no vision problems either.

Among your son's blood tests, did he have a vitamin D test (the "25-hydroxy D" test)? If not, please ask for one (a GP or neurologist can order this). And your son should ask for his own copy of any test results – it is important to have the actual number results.

Over 1/2 of the world's population is vitamin D deficient (it is even higher among just the American population). Vitamin D deficiency can result in neurological symptoms.

[Bellalisimo]

Apparently all results came back fine

[Snoopy]

How was your son's neurological exam?

With normal MRIs and if his neurological exam was normal Multiple Sclerosis would be highly unlikely.

Working with a Physical Therapist could improve function of hand/leg/walking function.

[Bellalisimo]

We are hoping to get him into physio this week.

[lyndacarol]

Apparently all results came back fine

There is debate on what constitutes "normal" for the 25-hydroxy vitamin D test. The outdated recommendation, based on bone health (development of rickets can happen in a child who has a level below 20 ng/mL), was simply that levels should be above 20. The Endocrine Society advocates that 30-100 ng/mL should be the reference range (and this is used at MANY labs), but GrassrootsHealth (http://www.GrassrootsHealth.net) has found many modern medical conditions correlate with a level below 40, so they recommend a reference range of 40-60 ng/mL. There are neurologists who recommend that patients with neurological symptoms should reach and maintain 80-100.

It is important to know your son's actual test result numbers. If you do not have them, perhaps a phone call to the doctor's office will get them for you. (In January, my 25-hydroxy D test result was 24 ng/mL.)

[Bellalisimo]

So what does that tell you?

[lyndacarol]

So what does that tell you?

My low (frankly deficient) vitamin D level indicates to me that my neurological symptoms are probably the result of the vitamin D deficiency since D is necessary for the proper functioning of the neurological system (and a metabolic system problem, i.e., this may explain my high insulin levels as well).

As Dr. Robert Heaney (of Creighton University) explains:

Vitamin D Sunshine Optimal Health: Putting it all Together (50 min.), at U of California Vitamin D for Public Health series, Integrating Sunshine, Supplements and Measurements for Optimal Health, December 9-10, 2014.


• Why is vitamin D important?
• How does it work?
• Where do we get it?
• How much do we need?

@04:41 "In the absence of adequate vitamin D, none of our body systems work well."
@05:08 "In all of these actions, vitamin D is not causative; rather, it is enabling – it's necessary for cell action – but it doesn't cause the action itself"
@16:50 All studies, irrespective of latitude, show that the majority of the world's population has inadequate vitamin D status.
@17:04 What are the consequences?
A series of diseases:
• bone diseases, falls, & fractures
• hypertension
• increased risk of cardiac disease
• pregnancy problems (prematurity, low birth weight, & increased Cesareans)
• diabetes & metabolic syndrome
• periodontal disease
• decreased resistance to infection (flu, TB)
• various cancers
• increased risk of multiple sclerosis
• increased risk of schizophrenia
@17:58 Deficiency will manifest itself differently, depending upon the tissue being stressed, thus explaining the diversity of responses.
@23:25 Vitamin D status is assessed by measuring 25(OH)D concentration in serum.
@23:57 Outdoor summer workers commonly have values as high as 60-80 ng/mL

With my doctor's knowledge and approval I am working to raise my vitamin D status; in time, I hope my neurological symptoms can improve.

This is the chart from GrassrootsHealth (http://grassrootshealth.net/media/image ... single.pdf) suggesting the daily dose necessary to raise a specific level to their optimum of 60 ng/mL. It is a place to start. A Brazilian neurologist has successfully treated thousands of patients in the last 10 years or so with high-dose vitamin D (See the Coimbra High-Dose Vitamin D Protocol sub forum here at ThisIsMS, http://www.thisisms.com/forum/coimbra-h ... tocol-f57/)

[Bellalisimo]

Thank you, I'll be sure he gets a printout of his results.

[Bellalisimo]

Now the doc doesn't think it's MS, been tested for almost everything else, so what could it be?

[Snoopy]

Now the doc doesn't think it's MS, been tested for almost everything else, so what could it be?

This is a question best left to your son's Drs. There are many other conditions, medications and mental health issues that can cause symptoms similar to Multiple Sclerosis.

He has trouble with his right leg where he just drags his foot, trouble with going up stairs and down and just plain walking, right hand is bad too but not his arm

Those type of symptoms, in MS, would indicate spinal cord involvement. These can also be symptoms of disc problems. If he has not had a MRI of the spine then I would suggest getting one. However, if the spine or spinal cord was involved he would not have a normal neurological exam. A normal neurological exam and normal MRIs (brain, spine) would make MS and a spine problem less likely.

One possibility is Functional Neurological Disorder(FND). This type of diagnosis is within the mental health possibilities. FND refers to neurological symptoms that are not explained by a disease process. FND is known by other names --- conversion disorder, psychogenic, as well as some others. FND is a psychological disorder.

Information about FND:
http://fndhope.org/fnd-guide/symptoms/
http://ajp.psychiatryonline.org/doi/pdf ... 0.09101440


Has he started Physical Therapy yet? If he has how is that going for him?