I have a question for those who have widespread and multiple fasciculations!!

At one stage earlier in 2008 I was having between 20-30,000 fasciculations per day. Then after taking Folinic Acid (??co-incidence) they decreased significantly to a couple of hundred per day, then settled over the past few months to about 500 per day.

I have been trying to do some more exercise like bike riding and walking and have noticed that the fasciculations have increased again in the past couple of weeks, particularly in my legs and buttocks. They are almost continuous. Is it possible that this increase in fascics could be connected to the extra exertion of exercise?

Also today I had a Nuclear Gastric Emptying Test to assess the speed of gastric motility for possible Gastroparesis, among other things. Hopefully will get those results in the next few days. Also have to have a repeat Gastroscopy tomorrow to clarify some confusing stomach symptoms and results.

My stomach is awful at the moment, the burning skin and fascics aren't crash hot either. I am still not on any PN medications, even though my Neurologist says I can get them from my GP any time I feel I need them! I don't know whether I am tough or stupid or just not in enough pain yet!!!

I get increased fasciculations with activity...yet I am very stiff if I do nothing.

I have no advice on the pain meds, other than, it is a personal choice, and you will know when to act.

I also have multiple fasciculations after doing any sport activity. I asked my husband, who is not with PN and he told me that it happens to him also. So, maybe it is a normal response to muscles "work". But in the case of neuropathy - we pay attention to it even more.

Hi Amit,

Funny thing is, I had NEVER had even one fasciculation (muscle twitch) prior to developing PN, in August 2007. It has all happened on a continuum since that time but the burning skin came first and progressed quickly to the myriad of other symptoms I have had these past 19 months.

If you have ever tried Acetyl carnitine?

When you exercise, glucose is burned in the mitochondria of
muscle cells, with lactic acid as a byproduct.
This irritates them and twitching may occur.

Twitching also comes from low blood sugar. So by providing
the carnitine you enable the mitochondria to burn fatty acids for some of the energyl

Many body builders and athletes use acetyl carnitine to make the workouts better.
You can also load on some complex carbs before exercise.

A cooling off period, after exercise, may help too. Some aerobic movement after intense muscle activity, slow but sure, may help clear any lactate out of the muscles for you.
Also a soak in epsom salts (magnesium) tends to help.

Megan,
You say that you had some help with folinic acid.
Have you tried the methylfolate-Metafolin, sold by Solgar?
It is supposed to be more effective than folinic acid.
That is my interpretation of the literature.
mrsD has done some research.

Thanks to those who posted suggestions re. supplements. The truth is, the last four months I have been avoiding many of the supplements which I had been previously taking because of the stomach issues I have had.....and today I got my answer.

Last week I had a gastric emptying study (Scintigraphy) and a Gastroscopy. Today I was told that I have Gastroparesis.

From here I have to make changes with my whole dietary approach - so another learning curve.

How I include supplement taking into this new regime I have yet to explore - particularly the bigger supplements that can't be easily broken down.

I would appreciate if any others with Gastroparesis could suggest what they do regarding supplements and large medications!

I am sorry to hear this, Megan.

How severe is the gastroparesis you have now?
Do you vomit often? How delayed is the stomach emptying?
What is your diet going to be allowing?

If you are mild so far, you should be able to take most supplements. The EFAs might have to be spaced out, since they are a fat. If you cannot absolutely swallow tablets and capsules then liquids are available, usually for more money.
Most tabs and caps dissolve in the stomach within 20 minutes to an hour. They can also be mixed into smoothies and shakes.

Megan, sorry about the gastroparesis - I got it 8 years ago - autonomic nueropathy - and live on liquids... my docs had me take no supplements at all except drinking ensure - which is what I live on - as the meds can just sit in your gut for hours and no, dont dissolve and move thru intestines as they should... (the ensure is made for people who have digestion problems to absorb nutrients).. until very recently my blood has been fine - even B12 - the last four moths I've been fighting an intestinal mega infection and treated with oral Vacymycin for 4 mouths - nothing was getting absorbed, and I have problems with blood now - platlets malformed, low B12, etc... the doc gave me a prescription for ferritin (acid? but small pill form)..... if what you can need you can get subliminal I'd do that to be sure you absorb, as gastroaresis can vary day to day and will definately affecft your ability to take "pills".... (there are some good gastroparesis diets out there on the net - just google the term and try to stay on as much solid food as you can!)

Also, fasilations? I get them at night - both from PN exasberation and also as a side effect of one of my gastric motility meds - unavaoidable as there are only a few on the market and this one works for me very well other then this...


Hang in there....

Thankyou MrsD and kmeb for your responses.

I woke up this morning (it's now Friday 23rd here in Australia) and sort of thought, well this is the start to another way of thinking - what do I have for breakfast?

Serendipitously for the past seven weeks I have been on a liquid diet because it was thought that I had a paraoesophageal hernia and needed surgery. As a precaution I was put on Optifast while I waited for the surgery and for me to lose a few extra kilos - which has now all been cancelled for the moment!

Prior to going on the liquid diet I was vomiting on occasions, as well as many other symptoms - which precipitated me asking for a Gastroscopy hence when they 'found' the 'now elusive' paraoesophageal hernia!!

I get slammed by nausea usually as soon as I eat or rather drink anything. The surgeon who told me the not-so-good news yesterday gave me quite a bit of information on diet for gastroparesis. In that info, it does suggest trying to eat solid food at the beginning of the day then assess how that goes as the day goes by - otherwise he basically recommended cooking and blending foods to achieve what the stomach would normally do!

It seems that my liquid gastric emptying is better than my solid food emptying which is almost non-existent. Unlike my usual form, I didn't ask for a copy of the report but I am going back to see him so will ask then for copies of all the tests he has done.

It will be a steep learning curve I am sure and I will be more than happy for any helpful hints regarding food and supplements/medications! I will look up those sites, kmeb!

KMEB I have a question! I was first diagnosed with PN (which has proved idiopathic at this stage) in August 2007 with burning paraesthesias etc etc. plus I was quite ill at that stage with severe nausea for eleven weeks along with epigastric fullness and early satiety etc. When I went to see the first Neuro she basically put it down to a somatoform illness when all the tests came back ok. The second Neuro was better and when I mentioned about the stomach issues, which had settled somewhat by the December when I saw him, he ordered a couple of autonomic tests - the sweat test and a heart test but they both came back normal.

I have often puzzled about this and wondered why if I was complaining about the stomach didn't he do a gastric emptying study then, but instead he did these other tests. Is the heart one related to the Vagus nerve also? Can Gastroparesis be the only manifestation of Autonomic Neuropathy or does it extend to the cardiac eventually? Not that I'd wish Gastroparesis alone on anyone - it's awful!

Kmeb, it must be very boring for you being on the same food all these years. Do you ever deviate and have some soup or something else finely blended or sieved for variety? I'm going out to an Italian restaurant tonight with my niece who was 21 yesterday and her family and am wondering what I'll have! Minestrone may even be too thick! Gelati not nutritious enough! Oh yikes!