Benign Fasciculation Syndrome - anyone else?

[Picklesandpies]

Hi,

I was wondering if there was anyone else with BFS on MN as it would be great to hear others' experiences.

Mine started nearly two years ago. I saw a neurologist who wasn't concerned as no weakness etc and it also coincided with my thyroxine being higher than it should (I had thyroid removed a few years ago due to hyperthyroidism but after a dose increase my T4 doubled in 6 weeks and I felt very unwell.) I'd also had a nasty fall the day before the muscle twitches started and was under a lot of stress at home which could have contributed too. I guess I'll never know.

I'm due to have an EMG next week - more for reassurance I think. I'm also going to push for an MRI. We would like to TTC another baby but I feel I need to wait until I know for sure that nothing else is going on. I constantly feel anxious that it's something sinister as I've had other strange sensations recently but I'm trying to tell myself that it's been nearly two years and I'm still doing everything I have always done.

I'd love to hear from anyone else with this as it feels so isolating and I don't think anyone understands what it's like to live like this 24/7.

Thanks

Just me then?

I have some undiagnosed symptoms - see my thread "Coukd this be MS" on page 2. I get short lived random tingling patches, twitches, small tremors all over the place, it's all very variable. I am hypothyroid, also with no weakness. The worst symptom is the dizziness lightheadedness spacial awareness that waxes and wanes but has been there most of the time for a couple of months now. I also have episodes of clumsiness and knocking myself on door frames when I walk through.

Have just had a load of blood tests and am awaiting results. My reflexes were also slightly brisk. Presumably neurology is the next step. I would love a head and neck MRI but it seems you have to go through the process of eliminating other things first.

What does your gp say?

Hi Mascarpone,

Thanks for your reply. It sounds quite similar to me but I have had this for nearly two years. I wouldn't say I feel particularly clumsy - although I do know myself on door frames occasionally but honestly think this is more down to rushing after children and being tired/careless!

It's funny that we are both hypothyroid (I would class myself as that due to not having one!) My dh is convinced it's all related to my thyroid problems. His Mum actually has had MS for the last 15 years and he doesn't see similarities in me. My endo consultant said most people will know it's something progressive within 6 months to a year and I can't honestly say I'm struggling with anything beyond annoying twitches which in turn cause me anxiety.

My original GP was useless so I changed GP and haven't seen him properly yet. The EMG results go back to him so I assume I'll see him for those. I know I have quite low ferritin (19 on a scale of 12-250) so I'm taking iron for that to see whether it helps. I saw a neurologist when the twitches first started and he examined me and tested my strength and he wasn't concerned at all. My endo thinks it's BFS but I do feel things need eliminating before they can class it as that. What bloods have you had done?

I know it's really crap and makes you feel very anxious due to the uncertainty of it but I know stress makes it worse so I try really hard to switch off from it. I'll be interested to see how you get on at the doctors and I'll update you with my results of course x

Bloods - full count, liver enzymes, thyroid (but not sure how many tests with that), ANA antibodies (autoimmune stuff like lupus), B12, CRP, there were some others on the list that I can't remember.

I've deleted my medical record access app. If they put the results on tomorrow and there's any out of range, I'll spend the whole weekend worrying when there may be no need to.

My reflexes are apparently a little bit brisk but the gp said not enough to be worrying. So of course I'm worrying!

Do you get the twitches where you see a small patch of skin ripple?

My biggest problem at the moment is the dizziness / unsteadiness, if they could just get me some medication so that I can keep life normal that would be something. It's the waiting for appointments that's hard. I also feel I need the "nasties" completely eliminated by MRI before I truly believe that what I have is benign.

It sounds as though they are being thorough with the bloods at least. Not sure what CRP is - I'll have to google. Did you push for bloods? I feel as though I've just been left to get on with it (unless I really push!)

I really do get the rippling skin with my twitches, yes. It was very strong to begin with (even seen through clothing) but they are still there even now. I can see the skin moving in and out. Very strange! The oddest thing I have at the moment is that my right ankle feels as though it has something stuck to the bottom of it and there is nothing there!

I hope you can get something for the dizziness. I have had a few episodes in the past where I've felt as though I've had one too many glasses of wine and it was horrid. They think it was an inner ear infection - things can look fine in there when they look but you can still have one. My bil had a thing where there were crystals in his inner ear that were causing that feeling and he was really worried until he found out it was that (think he self diagnosed and did necessary treatment.) I hope that's what it was for me anyway! Certainly doesn't sound like an MS type thing from what I've read. That seems to be accompanied by numbness and tingling etc

I'm going to ask for ANA blood test, or failing that I'll get it done privately.

Xx

Thought you might be interested in this

I have the odd tingling, but the neuro said it's not neurological, as it occurs in patches that only last 3 seconds, and it moves location a lot. Apparently real MS damage affects a specific area for a long time, e.g. Pins and needles in a limb constantly for at least a day but usually much longer. So he said anyway

Can I ask what symptoms your MIL had/has?

CRP is an inflammation marker, though not really sure what that tells the gp or what illnesses it indicates.

No I didn't push for bloods, I think they do them to rule out other things/areas of medicine before they go to the trouble of referring to neurology

I’m also hypothyroid and my legs and feet have been twitching 24/7 for over ten years now, with the added joy of almost constant cramps. I did manage to get a referral to a neurologist, who diagnosed sciatica of all things, but it’s never got any worse, so I’ve just left it.

It’s quite entertaining, watching my toes move independently and completely out of my control. I see it as different from Restless Leg Syndrome because I have no compulsion to move them, they move on their own.

A friend, who is also hypothyroid, and has the same symptoms, has been diagnosed with Peripheral Nerve Hyperactivity Syndrome, which is autoimmune in origin, and offered anti-convulsants. I don’t think I want to go there.

I'm inclined to think it's just another weird hypo thing.

This is very interesting - thanks for the replies both.

I'll reply later as must get on with dinner!