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11371651 tn?1417628832

MS, Parkinson's, BFS, none of the above?

Hello all, first time poster so please bare with me as I explain my symptoms and timeline.

I'm a 31 year old male and it all started Oct 1 2014, I was in training and I noticed that the index finger on my right hand started twitching, I could see the muscle on the inside of my finger firing, it lasted for about 20 secs and stopped, happened again in the afternoon and again in the evening, when it happened in the evening I decided to look it up on the internet, BIG MISTAKE! ALS, PARKINSON'S, MS, blah blah blah, that's all that came up and it threw me into a panic attack, I mean a hyperventilating, sweating, can no longer sleep and only pace panic. Up until this point in my life I had never really thought about any of those diseases which I can only imagine added to my shocked state.

I immediately made an appointment with my family doctor who in turn refereed me to a neurologist. I was able to see him with in one week, by this point my twitches where happening all over, still mainly on my right side but also occasionally on my left, I noticed that they started happening more often but with less frequency, more single twitches, just more of them in random areas. A week later I had a clean head MRI and EMG with the same neurologist. By this point my twitches had slowed down considerably, really only happening at night in incredibly brief episodes but to my dismay the lack of twitches seem to be replaced with pain.

I was getting hot pain on the top of my right hand (again, most symptoms are happening on the right side of my body), sometimes from thumb to wrist, sometimes just wrist, elbow, bicep, and in the armpit/chest area. The pain started out like a hot pain, changed to more of an ache, like I've been working my arm too much when I haven't.

By Nov 14 2014 I was knee deep in the internet looking at what was happening to me and becoming increasingly worried that it was early onset Parkinson's disease, it being mainly one side of my body really pointed me in this direction. I was getting depressed, my wife told me she saw me cry more in that month than the 10 years she's known me!, I was in a very rough place. By this point not only was my arm hurting me and driving me nuts but my right leg started getting a bubbly and pin and needles sensation, mainly in my foot, but sometimes my knee or thigh, or even hip. Again, all this right sided nonesense kept bring me back to Parkinson's and I couldn't take it anymore and basically demanded to see my neurologist again, I saw him that day and again past all of the in room "tests", I ask him if it could be Parkinson's (my biggest fear) and he said that tremor and rigidly were the hallmarks of Parkinson's, not sensory issues and pain, he told me I was experiencing benign fasiculation syndrome. That admittedly made me feel better and I started researching BFS and started thinking that maybe it was that after all, I took a break from work for Thanksgiving and was feeling better, I was still having pain but it was feeling more faint and my sleep was improving.

I asked my wife if she could recall anything in the months prior to Oct 1 that she may have noticed me acting differently even if I didn't, she couldn't recall anything and the only thing I could recall is that before all this started I was having a faint ache in my left side as well as my right knee getting tight after some morning runs, but the one thing that really stuck out to me that I completely forgot about was that for a split second at work several months ago I had a stabbing pain in my face, it was horrible, but only lasted a second and then was gone so I forgot about it.

This brings me to today, basically two months into this. My twitches have basically stopped completely but the pain is still there. As I write this my right bicep and hand feel tight (but I'm able to move them just fine) and now I'm having right shoulder pain, like I've been throwing baseballs all day but haven't. I've seen a muscle/skeletal doctor, a rheumatologist,given steroids that didn't work, muscle relaxers that didn't work, had a clean cervical spine mri, had a tone of blood taken, everything good (only thing found was low vitamin D which I'm now taking supplements for). Only things left are a lumbar puncture, DATscan, and time, maybe I can try diet changes like cutting out gluten or diary?

As of right now I've put away my Parkinson fears and am leaning towards MS mainly because my mobility is fine and all my stuff now seems to be sensory even though it is mainly on one side of my body (my dominant side which *****!). I just want to know what's happening to me.

Can anyone relate to this or offer words of encouragement?
7 Responses
987762 tn?1331027953
COMMUNITY LEADER
Hi and welcome,

I personally don't see Parkinson's or MS within anything you've mentioned, to me it would seem much more likely that what started this, was simply related to your training and nothing more...........but then you googled and instead of looking into all the general training related causes, you looked into the serious diseases and assumed the worst, causing a full blown panic attack and anxiety about your health, with symptom's basically spreading and changing from that point on.

I think you should seriously consider focusing on your anxiety levels and consciously avoid any behaviours, that maybe inadvertently escalating and generally feeding your health concerns to higher levels.........I personally believe what you have disclosed sounds more in line with what happens when someone is dealing with (health?) anxiety, than what generally happen's when it's a neurological condition like MS or Parkinson's disease.

Cheers...........JJ

      
11371651 tn?1417628832
Thanks for the welcome and response.

I should have been more clear in my earlier message, the training I spoke of was work related and it was a programming course. I did not mean physical nor weight training.

I certainly have anxiety but its from my physical symptoms not the other way around. I don't completely discount anxiety, it certainly doesn't help but I know something isn't right regardless of my anxiety levels which are a lot better now.

The pain is very real. Its becoming more of a stabbing and pulsating pain. Just going for long walks makes me leg feel shaky when I get home. Any kind of exercise seems to make me shaky or just feel weak. My joints seem to crack and pop. Sometimes my right hand is so cold it hurts, cold to the touch even though my left hand isn't.

1831849 tn?1383228392
Assuming that your symptoms preceded your anxiety, the anxiety horse is out of the barn. Once unleashed anxiety  can be  powerful symtom generator. Anxiety + Dr. Google can be a recipe for disaster.

2 months is a nano-second in MS terms. Many of us had MS for years prior to being diagnosed. In my case it was 20 years. While there is no smoking gun test for MS, there is a fairly standard battery of tests used to diagnose it.

If you want to rule MS in, or out, the best place to start is with a neurologist that specializes in the diagnosing and treatment of MS. My nruerologist deals exclusively with MS. He or she will likely order some combination of the following:

MRIs of brain, c-spine and t-spine all done with and without contrast.
Blood tests to rule out MS mimics like Lyme disease.
Nerve conduction tests
Evoked potential tests
Lumbar puncture
Thorough clinical exam.

From what you describe my mind did not leap to MS.

Just one man's opinion.

Kyle
7273670 tn?1412993125
Hello,

Wow, you have gotten yourself scared to death here! I am so sorry that you are experiencing all of this, no matter the cause. Kyle has given you some wonderful advice and I have to second everything that he has said. However, no matter what it is that is going on, it is obviously playing hell with your emotions and your life. This is not good, as you know. I'd suggest that you follow Kyles advice and seek out an MS specialist to rules this out and to ease your own mind. I am not saying that your symptoms are not real by any means, but try hard not to let yourself be swallowed up by fear. I'm added a couple of links for you that will hopefully help. My last advice to you it is stay AWAY from Dr. Google! Seriously. Get on with your life while continuing to seek help if need be but do not let this consume you. The effects of doing that can be more devastating than an actual disease.

http://www.nationalmssociety.org/

http://www.mayoclinic.org/diseases-conditions/conversion-disorder/basics/definition/con-20029533
987762 tn?1331027953
COMMUNITY LEADER
Yes, i did make the assumption the 'training' you mentioned was related to being athletic, cause you also mentioned your "morning runs"..........but your clarification of it being programming, still wouldn't necessarily alter the possibility of it being what originally started this all off!

It could of possibly gotten your attention in the way it did, because of something you were physically doing during that day, eg whilst engaged in the programming course the amount of writing and or typing 'may have', caused a muscle, in one finger of your dominant hand, to temporarily pulse/fire for 20 seconds........

I am genuinely unsure how you even connected your finger experience with physically disabling conditions like ALS, Parkinson's disease or MS, i googled 'index finger muscle twitch' and did find these conditions sometimes specifically mention the fingers, in amongst all the other common causes.

What you originally describe, would usually be more commonly caused by nutritional deficiency, or a musculoskeletal issues so a repetitive physical action is quite possible although since it rapidly spread and continues to change covering multiple locations throughout your body, I'd definitely be considering the possibility of either or both and your anxiety making it a lot worse than it otherwise would of been.

http://www.buzzle.com/articles/index-finger-twitching.html  
http://www.scarysymptoms.com/2012/01/muscle-twitching-all-over-your-body.html

I am in no way suggesting what you experience isn't real, but to make any of those conditions even remotely fit your initial seconds long finger experience, you'd have to be assuming way to much, to have thought what you described was the same or similar and then skipped over all the condition basics eg symptom patterns, general clinical signs, test evidence etc etc of these conditions.

Your anxiety obviously grew because of the medical conditions you focused in on, instead of feeling reassured your experience wasn't the same and probably not serious, your chosen reading material fed your anxiety until you experienced a full blown panic attack and in the preceding weeks your sx's escalated as did your anxiety and depression............fast forward to now and whilst your anxiety may have vastly improved, it most definitely is not under control because you are still very focused on having a serious medical condition, your now concerned about it being MS instead of your greatest fear of Parkinson's.

Take a step back for a moment..........in regards to the possibility of this being a neurological condition like MS, you need to keep firmly in your mind that you've only just seen your neurologist again, and you have absolutely 'no' evidence  suggestive of it being a neurological condition, so logically it's more likely to be something else....

You recently had both brain and spinal MRI's - nothing abnormal, your neurological tests (those in room tests) - nothing clinically abnormal, your sx's are sensory  - inconsistent with MS, sx pattern of spreading, mulitplying and changing rapidly etc- inconsistent with MS........your test evidence, lack of clinical evidence, sx's etc are 'all' red flags leading away from MS!        

Cheers...........JJ
11371651 tn?1417628832
Thank you for all for the great feedback although I'm starting to think I should have just posted a symptom and treatment list to deter the focus away from anxiety. I have a wonderful wife and son to think about so when something like this happens that 'may' be something serious I want to find out. It's only natural to get anxious if one day you start to experience unpleasant sensations you've never experienced before which just seem to be getting worse and/or changing and you can't think of any obvious cause.

In the hopes of helping future folks who may find this thread and have questions of their own I"m going to post my symptom and treatment list thus far -

Symptoms:
-Stabbing pain in face (months before everything else started, hasn't returned)
-Twitching (not tremor) of index and thumb of right hand (this has stopped during the past month), sometimes the pinky in my left hand.
-Random infrequent twitches all over body, mainly right side, they're bigger thumpers now, not so much tiny twitches anymore.
-Arm pain in various forms, started off as a hot pain, then ache, now more of a sonar type pain, seems to kind of pulsate and radiate through my arm, sometimes it's an electrical zap, like just in my bicep, or armpit area. When I rest my arm on my desk and lift my hand to my chin, my bicep feels abnormally tight, like I"m putting strain on it.
-Hand pain, similar to arm pain but there is a tightness feeling that comes with it, like the top of my hand is stiff and my fingers. Arthritis type pain from my thumb to wrist.
-Right hand gets cold to the touch sometimes, left hand always seems a normal temp.
-Odd right leg sensations such as ants under skin, bubbling under my foot, can feel blood rushing in leg, sometimes pain on the top of my foot, like I over stretched it.
-Hip soreness right side, feels like I've been overusing it when I haven't
-Right knee gets a tight feeling some times and has a non painful pop when I walk.
-Right side shoulder pain, it just aches and is sore, doesn't matter what I"m doing, this is my newest symptom
-Sleep issues (waking up early, or in the middle of the night, this is a lot better now)
-Again, most of my issues are only right sided.

Treatment:
-Family doctor (x2) - referred me to the other doctors
-Neurologist (x2) - clean EMG, clean brain MRI, told me I was experiencing Benign Fasciculation Syndrome and to come back if things took a turn for the worst in 6 weeks
-Muscle Skeletal Doc - found slight muscle atrophy in my right bicep (a bit flatter at rest then my left which is odd b/c it's my dominant side) but didn't seem too concerned, order a cervical MRI, came back clean, gave me steroids to take for a week which were horrible and made me have hot sweats and RLS, those symptoms stopped once I was off them.
-Rheumatologist - x-ray of hand and hip, came back fine, she put me on a heavy duty anti-inflammatory which I need to take for a month (currently still taking although I don't think it's helping)
-Psychiatrist - told me to take a low dose of Trazodone to help with sleep if needed but to keep seeing the other doctors.

I have an appointment with another neuro next week, he is a movement disorder specialist so hopefully he can offer some valued insight.

If not, I'll be forced just to give it time to see what happens, if things get worse I"ll take kwarendorf's advice and see an MS neuro. Maybe it is just BFS (http://www.bfsrecovery.com/whatisbfs.php, http://en.wikipedia.org/wiki/Benign_fasciculation_syndrome). It seems more and more likely that time will be my best diagnosis tool, if it's something serious eventually the symptoms will be painfully obvious, flip side, if things stay the same or improve chances are good it's not major, I'll update if I ever find out.

Thanks again for all of the feedback.
987762 tn?1331027953
COMMUNITY LEADER
Excluding your physiological symptoms from your symptoms list doesn't help 'you' or actually anyone else..........you may not of received responses you wanted or expected the focus to be on your mental health but it doesn't change what started you on this journey a couple of months ago.

Yes, it's natural to be curious and or experience some level of anxiety when your body does something quite odd, but most people would not of jumped to conclusions and had a full on panic attack after experiencing a 20 second pulse in their index finger. Which goes beyond normal levels of anxiety and it is what originally started your thoughts and fears of having Parkinson's disease......

Aside from the mental health perspective 'possibly' being a contributing factor to your big picture, in regards to Multiple Sclerosis.....

"Take a step back for a moment..........in regards to the possibility of this being a neurological condition like MS, you need to keep firmly in your mind that you've only just seen your neurologist again, and you have absolutely 'no' evidence  suggestive of it being a neurological condition, so logically it's more likely to be something else....

You recently had both brain and spinal MRI's - nothing abnormal, your neurological tests (those in room tests) - nothing clinically abnormal, your sx's are sensory  - inconsistent with MS, sx pattern of spreading, mulitplying and changing rapidly etc- inconsistent with MS........your test evidence, lack of clinical evidence, sx's etc are 'all' red flags leading away from MS!"

Cheers.........JJ        
    

  
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