Horrible Spasticity

A forum to talk about the general challenges of daily life with MS.
Post Reply
natashap
Newbie
Posts: 2
Joined: Wed May 18, 2016 6:43 am

Horrible Spasticity

Post by natashap » Wed May 18, 2016 6:45 am

I've been dealing with horrible spasticity since April and has gotten worse. I don't sleep much anymore at night and I work full time. My MRI shows no changes (minimal) and thoracic spine has no lesions. I've tried so many medications including sativex. I'm so tired and done with it all. I've also tried amitripyline, carbonmezipine, sinemet, quinine, nabilone and nothing. Please help....

User avatar
lyndacarol
Family Elder
Posts: 3390
Joined: Thu Dec 22, 2005 3:00 pm
Contact:

Re: Horrible Spasticity

Post by lyndacarol » Wed May 18, 2016 7:43 am

natashap wrote:I've been dealing with horrible spasticity since April and has gotten worse. I don't sleep much anymore at night and I work full time. My MRI shows no changes (minimal) and thoracic spine has no lesions. I've tried so many medications including sativex. I'm so tired and done with it all. I've also tried amitripyline, carbonmezipine, sinemet, quinine, nabilone and nothing. Ycolor=#0000FF]Please help[/color]....
Welcome to ThisIsMS, natashap.

I assume you have an MS diagnosis, since you are here at ThisIsMS. You "don't sleep much anymore at night"… perhaps it is a question of melatonin, "one of the major regulators of sleep-wake cycle.

Melatonin dysregulation, sleep disturbances and fatigue in multiple sclerosis.
http://www.ncbi.nlm.nih.gov/pubmed/22137446
BACKGROUND: Sleep disruption and fatigue are common in Multiple Sclerosis (MS). Melatonin is one of the major regulators of sleep-wake cycle. The role of melatonin in MS-related sleep disturbances and fatigue as well as the interaction between melatonin and Interferon beta (IFN-β) treatment were the subject of this study.

OBJECTIVE: To assess the influence of IFN-β treatment on melatonin secretion, fatigue and sleep characteristics in patients with MS.

METHODS: 13 MS patients and 12 healthy controls participated. Fatigue was evaluated using the Fatigue Impact Scale (FIS), sleep was assessed by actigraphy and day/night levels of 6-sulphatoxy-melatonin (6-SMT) in urine were determined using a highly specific ELISA assay.

RESULTS: Naïve MS patients demonstrated significantly decreased levels of 6-SMT and disrupted circadian regulation of its secretion, which were increased with IFN-β treatment, in association with improved fatigue. Sleep Efficiency was significantly lower in the MS group compared to controls.

CONCLUSION: Our findings suggest dysregulation of Melatonin secretion in MS, which may be influenced by IFN-β treatment. The results call for further characterization of the role of neuro-hormones such as melatonin in MS, and their cross-regulation with immune-mediators.
In view of the following article, I wonder if you have asked your GP to order a vitamin D test (the "25-hydroxy D" test) for you. (Especially since you "work full time" – I suspect that you work indoors, your vitamin D level is probably low, or even frankly deficient.)

A connection between vitamin D levels and melatonin has been studied. And if a sleep study has been done, perhaps you have been diagnosed with sleep apnea:

Serum Vitamin D is Significantly Inversely Associated with Disease Severity in Caucasian Adults with Obstructive Sleep Apnea Syndrome
http://www.journalsleep.org/ViewAbstract.aspx?pid=30430


"Is obstructive sleep apnea linked to low levels of vitamin D?", March 16, 2016
http://www.clinicaladvisor.com/is-obstr ... le/483478/


At least, it is one possibility to discuss with your doctor, if this test has not already been done. A blood test is pretty easy to take, this one is relatively inexpensive ($50-$70, which insurance usually covers), it must be specifically requested (it is not part of routine testing) – please ask for your own copy of any test results; it is important to have the actual numbers.

User avatar
lyndacarol
Family Elder
Posts: 3390
Joined: Thu Dec 22, 2005 3:00 pm
Contact:

Re: Horrible Spasticity

Post by lyndacarol » Wed May 18, 2016 9:03 am

As for muscle spasms…

According to Dr. Oz (http://www.doctoroz.com/videos/your-mus ... ng-serious), muscle spasms can result from (@2:20) dehydration; low levels of calcium, magnesium, or potassium; if you're resting too long in one position.

He recommends soaking in an Epsom salt (a good source of magnesium) bath as one of the best things to try: 2 cups of Epsom salts in your bathwater, soak for 15 minutes.

Easy and inexpensive – worth a try, in my opinion.

natashap
Newbie
Posts: 2
Joined: Wed May 18, 2016 6:43 am

Re: Horrible Spasticity

Post by natashap » Wed May 18, 2016 12:43 pm

lyndacarol wrote:
natashap wrote:I've been dealing with horrible spasticity since April and has gotten worse. I don't sleep much anymore at night and I work full time. My MRI shows no changes (minimal) and thoracic spine has no lesions. I've tried so many medications including sativex. I'm so tired and done with it all. I've also tried amitripyline, carbonmezipine, sinemet, quinine, nabilone and nothing. Ycolor=#0000FF]Please help[/color]....
Welcome to ThisIsMS, natashap.

I assume you have an MS diagnosis, since you are here at ThisIsMS. You "don't sleep much anymore at night"… perhaps it is a question of melatonin, "one of the major regulators of sleep-wake cycle.

Melatonin dysregulation, sleep disturbances and fatigue in multiple sclerosis.
http://www.ncbi.nlm.nih.gov/pubmed/22137446
BACKGROUND: Sleep disruption and fatigue are common in Multiple Sclerosis (MS). Melatonin is one of the major regulators of sleep-wake cycle. The role of melatonin in MS-related sleep disturbances and fatigue as well as the interaction between melatonin and Interferon beta (IFN-β) treatment were the subject of this study.

OBJECTIVE: To assess the influence of IFN-β treatment on melatonin secretion, fatigue and sleep characteristics in patients with MS.

METHODS: 13 MS patients and 12 healthy controls participated. Fatigue was evaluated using the Fatigue Impact Scale (FIS), sleep was assessed by actigraphy and day/night levels of 6-sulphatoxy-melatonin (6-SMT) in urine were determined using a highly specific ELISA assay.

RESULTS: Naïve MS patients demonstrated significantly decreased levels of 6-SMT and disrupted circadian regulation of its secretion, which were increased with IFN-β treatment, in association with improved fatigue. Sleep Efficiency was significantly lower in the MS group compared to controls.

CONCLUSION: Our findings suggest dysregulation of Melatonin secretion in MS, which may be influenced by IFN-β treatment. The results call for further characterization of the role of neuro-hormones such as melatonin in MS, and their cross-regulation with immune-mediators.
In view of the following article, I wonder if you have asked your GP to order a vitamin D test (the "25-hydroxy D" test) for you. (Especially since you "work full time" – I suspect that you work indoors, your vitamin D level is probably low, or even frankly deficient.)

A connection between vitamin D levels and melatonin has been studied. And if a sleep study has been done, perhaps you have been diagnosed with sleep apnea:

Serum Vitamin D is Significantly Inversely Associated with Disease Severity in Caucasian Adults with Obstructive Sleep Apnea Syndrome
http://www.journalsleep.org/ViewAbstract.aspx?pid=30430


"Is obstructive sleep apnea linked to low levels of vitamin D?", March 16, 2016
http://www.clinicaladvisor.com/is-obstr ... le/483478/


At least, it is one possibility to discuss with your doctor, if this test has not already been done. A blood test is pretty easy to take, this one is relatively inexpensive ($50-$70, which insurance usually covers), it must be specifically requested (it is not part of routine testing) – please ask for your own copy of any test results; it is important to have the actual numbers.
Hi lyndacarol,

Thanks so much for your response!

Yes, I've had MS for around 10 years. I'm now 32.

I don't believe it's an issue with melatonin. I have no problem falling asleep, and would no doubt stay asleep the entire night, if it weren't for the spasticity. My muscles visibly tense up, my toes bend in different directions, and I have to literally jump out of bed to try and straighten out my leg. This happens occasionally during the day, but even moreso at night, hence my inability to sleep. I haven't had a solid night's sleep since beginning of April, and it's really taking its toll on my overall health, including my emotions, mood, etc. It also keeps my husband awake, and sometimes I have to get up and sleep in another room just to try and not disturb him. The lack of sleep makes work extremely difficult, I'm already always fatigued due to MS (so not sleeping on top of general fatigue makes it twice as bad), and have no energy to do anything.

I've had numerous bloodwork and vitamin deficiency tests (even very recently), and all comes back completely normal.

My current medications for MS are as follows:

Lyrica 150 mg 1 Caps AM/PM PO
Baclofen 10 mg 2 Tabs AM/PM PO
Copaxone @Bedtime 20mg SC
Vimova 500mg 1 Tab QAM/QPM
Amitriptyline 1-2 Tabs PO QPM 10mg
Sativex Buccal Spray 1-2 Sprays at Bedtime

My current vitamins are as follows:

Lecithin 1200mg PO 1 Tab QAM
Vitamin D3 1000IU 5 Tabs PO QAM
Vitamin E 400 IU 1 Tab PO QAM
Vitamin B12 1200 mcg 1 Tab PO QAM
Omega-3 1000mg 2 PO QAM
Vitamin B2 100 mg PO QAM
lyndacarol wrote:As for muscle spasms…

According to Dr. Oz (http://www.doctoroz.com/videos/your-mus ... ng-serious), muscle spasms can result from (@2:20) dehydration; low levels of calcium, magnesium, or potassium; if you're resting too long in one position.

He recommends soaking in an Epsom salt (a good source of magnesium) bath as one of the best things to try: 2 cups of Epsom salts in your bathwater, soak for 15 minutes.

Easy and inexpensive – worth a try, in my opinion.
These are all great suggestions, but unfortunately I think I've already tried them all! I've been taking 1 TBSP of Magnesium in the mornings, and all other vitamin levels have come back normal on my bloodwork (likely due to my exhaustive list above). I drink 10-12 cups of water per day, minimum, so dehydration is pretty much out of the question. I also can't sit too long in one position as it is (too uncomfortable), and my job (hospital unit clerk) requires I be on my feet most of the time. I also push myself to go and swim 3-4 times per week (for 1 hour at a time).

I see both my family doctor and a neurologist, and both seem to be scratching their heads at this point. :sad:

User avatar
lyndacarol
Family Elder
Posts: 3390
Joined: Thu Dec 22, 2005 3:00 pm
Contact:

Re: Horrible Spasticity

Post by lyndacarol » Wed May 18, 2016 2:06 pm

natashap wrote:I've had numerous bloodwork and vitamin deficiency tests (even very recently), and all comes back completely normal.



My current vitamins are as follows:

Lecithin 1200mg PO 1 Tab QAM
Vitamin D3 1000IU 5 Tabs PO QAM
Vitamin E 400 IU 1 Tab PO QAM
Vitamin B12 1200 mcg 1 Tab PO QAM
Omega-3 1000mg 2 PO QAM
Vitamin B2 100 mg PO QAM

These are all great suggestions, but unfortunately I think I've already tried them all! I've been taking 1 TBSP of Magnesium in the mornings, and all other vitamin levels have come back normal on my bloodwork (likely due to my exhaustive list above).…
There is no doubt that your sleep problem is due to the muscle spasms!

Magnesium is supposed to help muscle spasms – some forms are more easily absorbed and used. The forms we hear recommended most often are: magnesium citrate, magnesium glycinate, magnesium malate (reduces muscle pain and tenderness of fibromyalgia), and others – magnesium oxide is not readily absorbed (and too much leads to diarrhea). Which form of magnesium are you taking?

There is so much controversy about the reference ranges that labs use. Many labs will not indicate a deficiency of B12 unless the test result is below 200 pg/mL. (In Japan, the cutoff point is 500 pg/mL.) B12 experts consider that the reference ranges in US labs are set too low.

The California-based organization, GrassrootsHealth, (http://www.GrassrootsHealth.net) currently recommends 40-60 ng/mL for the vitamin D level (http://grassrootshealth.net/media/image ... single.pdf). If you have the actual number results for the 25-hydroxy D test, I hope you are willing to share them with us. (My January test level was 24 ng/mL.) Even your daily dosage of 5000 IU may not be adequate to raise your blood level to an optimal level. (There are neurologists who recommend a level between 80-100 ng/mL for people with neurological symptoms.)

Since there is a wide variation in individual absorption, serum vitamin D may respond completely differently. 2 individuals taking the same dose of D3 in a supplement.

"Normal" is not precise; will you share your actual test numbers?

Post Reply
  • Similar Topics
    Replies
    Views
    Last post