Medical Student with 3 years of symptoms - First Post

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Medical Student with 3 years of symptoms - First Post

Postby iLeW123 on May 3rd, 2012, 4:08 pm

Hi everyone,

My name is Lewis and I'm 23 years old. I'm currently studying towards my final year medical exams, and will start as a doctor in August if I pass!

I thought i'd let everyone hear my story

3 years ago, I developed an awful viral infection alongside sinusitis. A few weeks later, I had some twitching in my right thigh, just in one specific spot, it went on for about a week and then disappeared. A few days after, I started to get a buzzing sensation in my right outer thigh. It felt exactly as though my mobile phone was vibrating in my pocket, and at first that's what I thought it was. However later that day, when my phone wasn't in my pocket, it started occurring again. Being a medical student, I went to the GP. He told me to stop carrying my phone in my pocket, as this was likely the cause. The following day, whilst in the anatomy lab, my entire leg began to tingle. As a result I went back to the GP, and I was referred into hospital. I had MRI's, Lumbar Punctures, and was clinically examined numerous times, with no abnormalities. Just a tingling sensation & occasional buzzing. I was discharged & reassured that this was not MS (I was convinced this was the case).

These unpleasant sensations continued over the next few weeks, sometimes tingling, sometimes burning, sometimes buzzing. The abnormal sensations moved around, sometimes my feet, sometimes my calves, sometimes my hands. I then started having a different kind of sensation in my feet & calves, so after waking up one morning, I decided to look at my feet. I immediately realised that this sensation was as a result of lots of fasciculation's occurring in my lower legs, especially my feet & calves. On top of this, I had developed what I now know is commonly known as ratcheting. I first noticed it in my legs, then arms, then my torso & neck, and eventually it was everywhere. I would judder as I did sit-ups, and my biceps would judder as I lowered a weight. I went back to the neurologist, and had another batch of tests (MRI, Nerve Conduction Studies) all of which were normal again. I had recorded both of these symptoms to show the neurologist. He shrugged them both off, claiming that lots of normal people had twitches, I tried to explain that these occurred constantly, but he didn't seem to care. He explained that he thought I had psychosomatic symptoms, likely due to anxiety.

In my own mind, I knew these symptoms were very real and I was convinced that this was likely early MS. However I could appreciate that with normal MRI's this was unlikely, but the medic in me knew that just because something was unlikely, didn't mean it was impossible. From that point I just accepted that I had MS, and that I needed to enjoy the remaining time I had before I developed significant disability. So even though every once in a while I would get upset when my symptoms were particulary bad (awful burning sensations in lower legs + constant fasiculations) I tried to get on with things.

Now I'm 3 years on from the onset, with no worsening of my condition, I recently started to question whether my assumption this was MS, may be wrong. So I went back to the drawing board, with my greater medical knowledge and started to consider the other possibilities. I had came across BFS when I first developed the symptoms, but had quickly disregarded it, because I didn't think that sensory symptoms were part of the syndrome, so it didn't fit me. However when I came across the Peripheral Nerve Hyper-excitability syndromes again, a few weeks ago, I realised that my symptoms absolutely fit into this category. As a result, I now have hope that I infact have BFS or a variant of that, considering that in MS you would expect some sort of deterioration by this point.

Ok so that's my story (apologies for the length)

A summary of the symptoms I experience day to day include:
- Constant fasciculation in my calves & feet (made worse by stress, improved by alcohol) - they often occur randomly elsewhere also - face, arms, hands
- Burning sensations - mainly from below the knee - but again can move around
- Cramps - mainly foot arches & calves - but hands also affected
- Ratcheting in all joints
- A sudden burst of fasciculation's in chest & elsewhere when yawning

I'd love to hear from anyone who can relate to my experience & symptoms, or anyone who wants to say hello :)

So it's lovely to meet you all, hopefully I can be a useful member of the community

Lewis
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Re: Medical Student with 3 years of symptoms - First Post

Postby kphilippe on May 3rd, 2012, 7:13 pm

Sounds like you have a pretty good perspective on things. I've been in a similar boat for the last few years, but I found BFS a bit before you did. Mine started out with an uncorrected astigmatism as well as twitching, leading me down the MS path. I have had non-stop twitching in my calves for the last 3 years, but it doesn't bother me. Neither do the quick hitters or the eye twitch that only happens when I close the other eye (one of the stranger ones). I do get a bit concerned every once in a while about the sensory issues, like the transitory burning sensations or the stiffness that comes when standing still for a while. But then I do a quick search here and find a whole bunch of people that have the same thing. I too probably have some PNHE that kicks in, but most people here think that BFS and PNHE are pretty similar.

One thing that definitely makes my symptoms jump is stress/anxiety. I know it is difficult to control while you are studying for exams, but if something new pops up, try not to worry about it. Find something to take your mind off it (exercise, a beer, etc.) and it will hopefully fade into the background.

Good luck on the exams.
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Re: Medical Student with 3 years of symptoms - First Post

Postby Yuliasir on May 3rd, 2012, 11:27 pm

Hi Lewis,
you have a great advantage of being a medical person so your approach anyway already was quite systematic!

I am browsing this forum already for 4 month or so having 6 month of BFS story with all realted fears and I can tell you that many many members here have a sensory symptoms, at least one guy has twithcing in the calves relieved with alcohol (for me, however I am not a medic, it looks like quite evident sign of hyperexitability because alco today relaxes the muscles but acetadehyde next day makes them worse).

As a doctor you might be well convinced with the fact that your MRI is clean, and even if it would not be clean - from the Nervous system Diseases Treatment Europe Handbook which I had to translate last year (and which played I believe a clear part on my own BFS onset) I know that MS leisons have to be quite specific to allow diagnosis, so if you do not have them at all, you probably are Ok.


I feel like physical and mental pressure required to become a doctor is enough to create certain neurological conditions, benign by nature but exhausting. I just wondered why you put psychosomatic issues into something 'non-real'. Of course they are real... We do no see little green folks produced by our minds but we feel quite a real pains and other unpleasant sensations...

wish you good luck with your speciality exams!
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Re: Medical Student with 3 years of symptoms - First Post

Postby iLeW123 on May 4th, 2012, 3:20 am

It's good to hear that others experience these awful sensory symptoms (although obviously I'd rather none of us did)

I used the wrong words when describing psychosomatic symptoms as "not real" . What I meant was that the underlying pathology causing the symptoms is not caused by me constantly worrying, as I'm pretty relaxed, these symptoms force themselves into my day, regardless of whether I think about them or not.

I really appreciate the kind words in regard to exams :)

I'm going to write an in depth article on peripheral nerve hyper excitability on a medical revision site I started a year ago, in to raise awareness of the condition in the next batch of future doctors, so when it's done I'd love to hear some feedback. It will defintely have some impact, as the site currently has around 50,000 views a month. The site is www.geekymedics.com (I create all my own 8-bit retro art too, as I'm a self admitted geek)

Would still love to hear from others with similar symptoms also

Thanks

Lewis
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Re: Medical Student with 3 years of symptoms - First Post

Postby chrissi on May 4th, 2012, 3:28 am

Hi Lewis...name a sensory symptom and I had it....I have found quite a good way for me to deal with those things now and I can calm it all down quite good, but with stress or infections (mine came after a bad viral infection with high fever) I still get relapses. I have listed all my symptoms about half a year ago....you will see my body is a one-woman-freakshow :wink: http://www.nextination.com/aboutbfs/forums/viewtopic.php?f=8&t=17156. And I can tell U- I had soooo many people contacting me after writing it saying they had the same stuff going on (or parts of it..).
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Medical Student with 3 years of symptoms - First Post

Postby iLeW123 on May 4th, 2012, 3:44 am

Thanks Chrissi. Just took a look at your symptoms & I too have experienced a large portion of them. There is one in particular that I did not list on my description as I felt it just sounded weird & people wouldn't get it. It's the sensation of having damp patches (usually my feet, almost as if I'm wearing wet socks). I've told my family about this symptoms, as it's a fairly regular one, and they struggle to understand it. So i'm glad you too have experienced this weird, uncomfortable sensation!
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Re: Medical Student with 3 years of symptoms - First Post

Postby Yuliasir on May 4th, 2012, 4:54 am

good idea with the site! and I like the desing ;) I remembered my younger years when we were playng Theme Hospital PC game with their funnest ever diseases like Kindey beans or Inflated head (due to watching too much of TV).

I also remembered that I was considering myself pretty well and relaxed and I just had full home of workers, my daughter complaining with migraines, visit of my old friend with her 8 years daugther and my husnabd was assigned to a new job far away from home...and when I had a night panick attack I went to neuro and said: "I was so badly surprised, you know I am already in good relaxed mood for few years...". I mean we might even really be relaxed but sometimes things come to a threshold - and then BOOOM - a BFS. Or panic attack. Or something else...

My own version of BFS is now more related to percieved weakness and cramps or maybe I just did not get the stage of prevailing sensory symptomes. So for now I could not be much helpful to you as a source of info but I believe it is a great and good and right idea to attach some more attention to diseases like PNH and BFS, just because lack of proper knowlede or even denial of such conditions might cause unnecessary suffering because people always think first for dreadful or heavy diseases and often refuse to accept that their cases are benign.

Good God I had a look today almost occasionally into Neurology handbook I mention I had to translate last year... ughhh... No wonders that I got my onset after reading that several quite innocent symptomes are accompanying deadly diseases (and nothing else was mentioned). It was just the part of the whole huge book related to heavy diseases, so it was such a relieve to find AboutBFS then. Hope your site would be another source of more detailed info for us, and I also whish you success with the paper you are going to write.
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Re: Medical Student with 3 years of symptoms - First Post

Postby Yuliasir on May 4th, 2012, 5:17 am

I think you could also might find this extensive survey made by pbohan useful
viewtopic.php?t=16091
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Re: Medical Student with 3 years of symptoms - First Post

Postby sussemaus on May 8th, 2012, 3:33 am

Well, from someone else with a medical background: lumbar punctures and clear MRI's = no MS. Twitches are also not a clinical sign of MS.

Having said that all that, if (as a doctor) you go out into the world and tell patients that rapid (3-year) deterioration would have occurred in MS, you would be doing them a disservice. Relapsing-remitting MS is by far the most common type. MS can remit for years (sometimes more than a decade!) at a time before flaring up again. There is also what is known as benign MS, where attacks will occur and the MS will then remit, leaving no traces. Just something to be mindful of as you go out into the world treating patients and writing things on websites. With the treatments available today, many people with MS live very long, productive lives and the effect on an affected person's lifespan in only a few years shorter than the average lifespan.
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Re: Medical Student with 3 years of symptoms - First Post

Postby sussemaus on May 8th, 2012, 3:35 am

It's good however that you've had this experience with health anxiety. Make sure to carry it forward when treating patients! So few doctors understand that it's real and can be quite debilitating (and even produce/mimic symptoms).
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Re: Medical Student with 3 years of symptoms - First Post

Postby iLeW123 on May 8th, 2012, 4:11 am

Your absolutely right that MS can take many years to cause significant disability, and therefore not having deterioration in 3 years doesn't completely rule it out. What I meant was that I've started to feel more confident that this hopefully isn't MS, however this is still a very real worry of my own. Even just last night, when my symptoms were particulary bad I got upset & started to wonder if this really is benign. I guess I was in a particulary positive mindset when I first posted the other day
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Re: Medical Student with 3 years of symptoms - First Post

Postby submarine on May 8th, 2012, 7:19 am

Just want to say hi to you. I have similar experience and most symptoms are still going on. I have a clear Brain+C-spine MRI which did not completely remove my worrisome about MS. Those on-going symptoms always remind me that I have something wrong. And just like you, I convinced myself that I have MS but my neurologist tend to believe that I'm in the early stage of MS which can be reverse by keeping regular hours. I posted a long post about my recent MS fear before and hoped that I can be just like you to have no progression in 3 yrs.
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Re: Medical Student with 3 years of symptoms - First Post

Postby Jujulia on May 8th, 2012, 8:57 am

submarine wrote: my neurologist tend to believe that I'm in the early stage of MS which can be reverse by keeping regular hours.


What do you mean by that?
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Re: Medical Student with 3 years of symptoms - First Post

Postby submarine on May 9th, 2012, 12:55 am

Well, my doctor said that maybe I'm in a stage before the first onset of MS and I can keep my immune system back to order again by keeping regular hours and doing exercise. That 's what my doctor told told me since he can't find spot in C-spine MRI to explain my symptoms. On my record he wrote: multiple sensory ganglion neuropathy
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Re: Medical Student with 3 years of symptoms - First Post

Postby Yuliasir on May 9th, 2012, 2:18 am

I think regular hours and workouts are good anyway for everybody. It is known that MS onset might happen after significant stress... as a part of autoimmune reactions started maybe. My Mom, for example, developed asthma as a result of stress (I left home for 6 years and went for 1000 km to study chemistry) and allergy of upper respiratiry tract, some people develop other conditions... I mean it is not necessary that you would really develop MS in next few years or decades, but anyway keeping hours is a great thing.
I messed my own sleeping schedule for a week and booom! Small stress yesterday, and today I am in flareup...
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Re: Medical Student with 3 years of symptoms - First Post

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