New terrified twitcher

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New terrified twitcher

Postby DrLemur on September 14th, 2013, 4:20 am

Hi. My name is Dan. I'm 30 years old from Australia. I wanted to just share my story of what's happened so far.

About two months ago I felt what I thought at the time was blood pumping through the left side of my head near my temple. I suffer from anxiety so any strange symptom I can't seem to explain is cause to freak out for me generally. I went straight to the doctor as it was happening several times that day. She checked my BP and found that it was quite high (160/70.) and my resting BP was also high. She then rushed me over to do a ECG which came up fine. After which she sent me to do a CT scan. On the way I looked at the referral form and she had scribbled on it "Aneurysm????".. Of course just seeing that written there caused a considerable amount of distress. So I went in, did the CT and something showed up on it that didn't look quite right but was too hard to see. So they sent me for an MRI to get a better look but I didn't have the money yet so I had to wait a week. I was a jumble of nerves pretty much that whole week waiting and thinking I'm probably completely screwed and have brain cancer or something equally horrible. But they do this MRI and apart from finding maxillary sinusitis (which is odd because I don't have any symptoms of that apart from one partially blocked nostril that I've always had.) it comes up clean. The doctor says that maybe these blood thumpings in my head were due to high blood pressure and puts me on BP mediation. A month goes by on the BP meds and my BP goes down to 140/70 but the thumpings get more frequent not less. My arms and legs started to feel weak on and off. Then one day I notice the same thing happening in my right thigh.. I think to myself.. Well the femoral artery is there somewhere there's definitely something crazy going on with my blood, but then one day I was looking at my leg and finally realized it was the muscle twitching because I could see it go off under the skin. Of course I then did some internet searching and discovered ALS and MS and all the scary things that have muscle twitchings and weakness as symptoms. So freaked out about that. Within the next week I notice my left eyelid twitching almost non stop for a few days before slowing down to intermittent twitches, then my calves, then my lower and upper back, my palm, my abdomen and other random places.. But the main place it twitches every single day without fail every few minutes is my right thigh. The head twitches stopped almost completely. I notice the twitching most at night in bed or when sitting on the couch however I have had them while walking around as well even in my legs. After that came a constant strange burning sensation and soreness of the muscles around the twitching areas. I remember reading somewhere that MS involved burning and that has worried me even more. Then lately I have been waking up with dead or numb limbs and pins and needles in a hand or a foot or an arm and a numbness in my upper lip which goes away as I get up and move around. I put it down to maybe sleeping on my arm but I have only had that happen maybe twice in my life and now it's happened 4 times in the same week? That seems a bit suspect.. So I go back to the doctor and tell her all of this. She tested me for clinical weakness by pulling on her arms or something and then sent me home saying my symptoms were all likely caused by stress. Something I was unwilling to accept since I have had stress and anxiety my whole life and never once had any of these symptoms as a result.

So I went to another doctor who seemed far more concerned and referred me to a neurologist for an EMG. Then I found out what an EMG was and since I have an irrational needle phobia was too scared to go do that so have delayed it hoping all this would just go away. It hasn't. I just got even more twitches which seem to occur with increasing frequency particularly in that right leg. Finally I come across this site on the internet and from what I have read so far it sounded like maybe what I have could be BFS? At least I am hoping to Christ it is and not something degenerative. I just want to be sure so I can calm down and stop feeling like I have something life threatening. Anyway I have some questions. I realize they may not all be able to be answered but an opinion would even help.

1.) I was hoping for someone here to tell me if the things I have mentioned so far are consistent with BFS? (Both of the doctors I saw just looked at me funny when I mentioned BFS as if it was something I made up and made me feel crazy.)

2.) What serious conditions exist that involve the symptoms I have? Is it close enough to warrant forcing myself to go have a panic attack and go through an EMG?

3.) If I do have an EMG and it comes up clean what illnesses/conditions does that rule out and what then is left to rule out after before I can confirm it is definitely BFS?

The anxiety of all of this has really taken me into a tailspin and every time I feel the twitches I feel incredibly anxious. Thank you to anyone who has read all of this. I apologize it was so long.

- Dan
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Re: New terrified twitcher

Postby Yuliasir on September 14th, 2013, 7:53 am

Hi Dan,
becasue you are asking of 'what conditions match those symptomes' I can suggest from your description that it might be one which was used to call in my county an 'autonomic and circulatory crisis'. It involves strange feelings like abrupt feeling of blood circulation in various parts of the body, feeling of tight bandage around limbs or head, feeling of heart actions/extrasystoles, pains in the bowel region, strange diffuse sensations, panick attacks, etc. etc. However recent studies revealed that there is in fact not so much involvement from autonomous and circulatory systems, but rather from central brain. It is suggested that patiens with such presentation might have processing errors caused by stress mostly, at which some signals coming from autonomous system and processed 'anonymously', in a hidden way, become sensed. That is why people with labile nervous system might at certain conditions feel their normally 'hidden' activities, such as guts peristaltics, heart cycles, might feel unfiltered signals from the skin (interpreting that as burning, formication, cold patches etc.) It is just what happens to people with 'normal' brain when they take certain 'recreational' drugs and had extra excitation on brain zones which normally are not excited enough to pass our conscience barriers.
I can assure you that this crisis has certain threshold. For example, I was anxious since early childhood (started at 6 yo, practially diargnosed with obsessive fears disorder at about age of 8, and later diagnozed as GAD, having nonstop obsesive fears almost daily for decades) and managed to get over this threshold only close to 40 (my BFS had started when I was 41, two years before I had panick attack, etc.)

Clean EMG and normal clinical exam pretty well rule out any current neurodegenerative process. Usually people who were early diagnosed with MND have suspicious signs on EMG quite long before clinical weakness and other obvous symptomes, so if you do not have those signs, you might be quite sure there is no neurodegenrative processes in your body (except those which atre age-related and therefore everybody have that).

I had seen here on the board one example of really thorough test panel made to exclude all know reasons for twitches. it was including tests of thyroid gland fucntion, tests for bilirubine (Gilbert disease to rule out), test for complement system (lack of C1 damages muscle membranes causing twitching, lack or excess of C3 damages gastric wall causing inability to absorb B vitamines), test for celiac disease, Ig tests to check overall immune status, and test for neuroinfection (Syphilis) and something else, totally over 10 tests I think , some of them really complicated.

But in fact major experience of local fellowship demonstrates that if neurological troubles are ruled out by EMG and clinical exam, then most probably it is BFS. Not all doctors even heard about it, some consider it as extremely rare but it seems to be not true. Anyway, the truth is that if you do not have major neurological ground behind your twitches, they most probably are benign and there is no proven cure to switch them out. Most of those who managed to overcome their BFS did that using healthy lifestyle, reasonably balanced diet, good sleep, moderate physical activity, meditation, self-trainig, psychotherapy and sometimes antianxiety medication.

As you say that you are anxious and stressed for long time, have active phobias etc., probably it is a bout of stress disorder and then you need to get proper treatment for it, which of course is not neurological but belongs to so called 'small psychiatry' field. At least from your description many symptomes match typical stress related disfunctions (including such strange as nighttime numbness and fascial numbness).

with best regards
Yulia
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Re: New terrified twitcher

Postby DrLemur on September 14th, 2013, 8:53 am

Yulia,

Thank you for reading and responding to my post. I suspect you are correct and that was reassuring. It is interesting as I read how many BFS people also suffer with pre-existing anxiety. Makes me more inclined to see a strong link between the two. I think I will perhaps get the EMG done if not only for my peace of mind and to keep me calm. Maybe it could do me good to face the phobia of the needles also. I hope it is not too bad or painful. I have a very low tolerance for pain. Anyway I really appreciate your thoughtful response. Cheers.
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Re: New terrified twitcher

Postby Yuliasir on September 14th, 2013, 12:41 pm

Of course it depends on performer but I would say it was not the most painful intervention im my life for example. Quite tolerable. Doctro would nto torture you for sure.

Yep, many people here have either previous history of anxiety or have BFS as a nasty company to their first ever anxiety bout (it is well known that 2\3 of obsessive and anxiety disorders manifest at early 20s to early 30s). it is till not known what is the relation between two conditions, but I think stress makes all - switches the brain to hypersensitivity and causes local muscle membraine damage. Many people here also have hypoermobility (extra mobile joints in various forms, including Ellers-Danlos or Marphan-like syndromes). I have Ellers type :))) Hypermobility is also known to be associated with higher occurence of GAD/OCD (some say 10 times more), so probably the true root cause might me even multiple genetic damage (inherent or as a single occurence (spontaneous mutation), affecting brain structure (making it more vulnerable to stress and hyperexcitation), cartilage (hypermobility), immune system (possible lack of complement C3 factor or changes in C1, affecting myocytes membranes) and maybe evem muscle structure itself. We (BFSers and hypermobile people) are also known to be prone to vascular reactions like Raynaud syndrome and BFS people aso frequently exhibit idiopatic urticaria, whic means there are sudden releases of hystamine in our fat cells (aslo often as reaction for the stress, heat, cold or even water!).

So I think we have complex disorder which generally mostly affects our mind and brain, parlty muscles and immune system, and thererfore the most proper treatment is that one aimed for overall stress reduction.

Wish you a good luck. I can really assure you that therer is a whole bunch of people herer who managed to get significant relief.
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Re: New terrified twitcher

Postby RGB on September 14th, 2013, 3:39 pm

Welcome.

Just to comment on a specific...

I recently had an EMG and am also not too keen on needles (to put it mildly!). However, it really isn't as bad as some parts of the internet lead you to believe. The needles are more like very thin wires and nothing at all like hypordermic needles. I am not at all brave and was pleasantly surprised by the lack of pain and the fact that the 'needles' were too slender to even see properly.

As you have a 'low threshold for pain' then I won't now mention the Ashes test series :)

(English) RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: New terrified twitcher

Postby DrLemur on September 20th, 2013, 9:54 am

Ha yes let's leave the ashes well alone.. :)

Interesting Yulia that you mention that because I too have hypermobility in many places. Had it most of my life. Definitely don't think that's a coincidence. As for the EMG I'm probably going to cancel it as in the absence of any other symptoms or clinical weakness as well as the other information I have gained from this forum I am pretty certain despite my irrational worries that what I have is in fact BFS. And certainly not ALS or MS. One of my main questions is what kinds of things aside from those can be diagnosed with an EMG? Are there any serious conditions I don't know about that present early on with twitching and muscular pain/burning alone without the more worrying symptoms?
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Re: New terrified twitcher

Postby Yuliasir on September 20th, 2013, 9:59 am

EMG is exclusively a way to diagnose your muscle activity. So from flat feet to sciatica, stroke, damage of spinal brain itself, various muscle dystrophias (most of which are inherited and manifest in early childhood) any disorder which alter muscle activity could be seen on EMG. But I am not sure you would need to be cleared from all of them :)

so intersting to see another hypermobile person with 'unholy tirade' - hypermobility, anxiety disorders, BFS :)
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Re: New terrified twitcher

Postby emmie.s on September 20th, 2013, 10:42 am

I'm hypermobile too! In fact when I went to get my last EMG (which was completely unnecessary) the specialist made a note of it on my chart and told the resident that hypermobile people often have weird symptoms too. My neurologist said the same thing, but made like it was no big deal and she then gave me the option of going to genetics to get tested for Ehrlos Dhanlos syndrome. I just canceled my genetics appointment becuause my twitching is getting better. I also have gilbert's syndrome and slightly positive ANA. Oh and of course like the rest of us I'm an anxious person too, but I've been getting better about it thanks in large part to this site and the awesome helpful people.
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Re: New terrified twitcher

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