New Here: Seeking Feedback

[harmonyhd]

Hi Everyone,I am new to the forum as a “poster” but I’ve been reading (and re-reading) several of the posts on this site for a few weeks now. I finally decided to submit my story in hopes it may provide insight for both me and anyone else who comes across what I’ve written. I apologize in advance for the length and for potentially repeating what many others have written.In December of 2009 I was experiencing strange numbness and tingling in my right arm whenever I had my head in a certain position. My GP referred me to a neurologist and I was diagnosed with “Bi-lateral degenerative disc disease at the C4-C5 and C6-C7 vertebrae.” My neurologist actually didn’t seem very concerned about it other than to say I should avoid rear-end collisions and stay off roller coasters. “A normal part of aging” is what he mentioned. He did mention that my cervical spine is oddly shaped and might be putting mild pressure on my spinal cord. I did an ergonomic evaluation at work and found that by positioning my monitor correctly I could elevate the symptoms in my arm. As of this writing those symptoms have not returned. I do believe these issues were related to my cervical spine but I thought I’d note the condition here anyway as others have expressed thoughts this may be the cause of our suffering.In August of 2010 I injured both my back and a muscle or ligament in my left side (all I did was pick up a suitcase!). The back pain healed by itself, but the pain in my left side remained. My GP referred me to a rheumatologist who diagnosed the problem, from a physical exam alone, as a pulled muscle. She gave me a shot of cortisone and told me I would likely be “good as new in 3-5 days.” 3 weeks later, after the pain had not reduced, I spoke with her to update her on the situation. At this point she prescribed 2 medications; Voltaren for inflammation and Flexeril to relax the muscles. She also made an appointment for me to come in and see her 3 weeks later. I began taking both medications. The Flexeril may help with the muscle issue; at the very least it puts me to sleep so I don’t feel the pain. Jump ahead about a week and, while at the zoo with some family, I began feeling a strange numbness in the bottom of my right foot. I saw a podiatrist who took x-rays and after an exam diagnosed me with sesamoiditis (an inflammation of the sesamoid bone in the foot). Nothing dangerous or worrying he told me and gave me an orthotic to help relieve the pressure on that bone. I was told to wear my shoes and orthotics anytime I’m walking around until things get better.I consider the day of my follow up appointment with my rheumatologist as my D-Day with all of the BSF symptoms. As I was sitting in her waiting room I noticed the twitches in my calves for the very first time. They may have been present for longer but it was a warm day and I was in shorts for the first time in a while. They were going CRAZY! During my appointment I pointed the twitches out to my rheumatologist who just shook her head and said “I have no idea what that’s about”. She then went on to state that when she saw me last she hadn’t reviewed my past history enough to see the diagnosis of degenerative disc disease. She referred me back to the neurologist I saw in 2009 for a new MRI and EMG/NCS to determine if the previous condition had gotten worse. She told me to stay on the meds until I see her again in 6 weeks.About 4 weeks ago I had the MRI of my cervical spine and follow up with my neurologist. He indicated that the neck looked a little bit worse but nothing dramatic. I told him about the twitching in my calves at which point he said “I twitch all the time” but he still performed a clinical exam. No weakness or atrophy but he did note that I am pretty skinny (145lbs) for my height (6’3) and that some of the muscles in my shoulders and back looked thin. He initially “guessed” that it could be a form of Muscular Dystrophy and that he wanted to have my CK levels checked. Needless to say I was now in full panic mode. He drew blood and ordered the EMG/NCS for 2 weeks later.The blood test came back and showed no evidence of an increased CK level and the neurologist stated that this was the evidence he needed to rule out Muscular Dystrophy. Of course my fears then began to focus on ALS and stayed there until the EMG/NCS which I had about 5 days ago. Both tests came back clean and my fear of ALS has since diminished considerably. That said the newer symptoms that I began experiencing during the wait for the EMG have only gotten worse. Because of this my neurologist ordered an MRI of my full spine (cervical, thoracic and lumbar) and a brain scan. He also is testing my blood. I’m not sure what he’s testing but I left 13 vials of blood behind last Friday. Now my fears have begun to navigate their way to MS. I don’t feel I have MS as I don’t have any of the other symptoms associated with this disease (no balance, vision, heat intolerance issues) but as we all know the fear seems as real as the disease sometimes. I am constantly twitching in the calves, which I can actually manage not to worry too much about. I’ve had twitches (though not constant) most of my life. It’s these new sensory symptoms that I don’t understand and I am extremely worried about. Lately I’ve had this burning feeling in the front of my calves, a feeling of someone pushing a dart somewhere randomly (one second it’s my face, the next a forearm, the next my elbows, the next….) I also have this strange sensation that I’ve got water dripping from me somewhere (hot and cold) or that someone has sprayed me with water. Often I feel tingling in my chest, the left side of my face or backs of my biceps. A few days ago I got a sharp stabbing pain so bad in my right ankle I almost couldn’t use it (it went away within 20-30 seconds). The symptoms seem to increase with movement, so much so that I’ve literally tried to stay still for as long as possible at night. I’ll lie down on the couch after work and only get up when it’s time for bed. Needless to say this is taking a toll on my personal/work life. I am now awaiting the results of my blood tests (I just left a message for my neuro to see if they’ve come in) and the full MRI workup scheduled for the 26th and another appointment with the neuro on 6/4 to learn the results. I will also meet with the rheumatologist on the 25th for a follow-up to the muscle problem in my side. I plan to ask her to recommend/refer me for physical therapy as the meds just aren’t doing it. I should also mention that I suffer from anxiety, though I’ve never been diagnosed clinically. In the last year I’ve had 3 panic attacks (all unrelated to health concerns) one of which was so bad I thought I was having a heart attack.I am so scared of this. I have plans to get on a plan the day after I hear the MRI results and head to Europe where I’ve been planning to ask my girlfriend to marry me. Now I feel like I should wait. Who would want to tie themselves down to someone who may be ill?I do have some questions, if anyone here is willing to take the time and energy to respond I would greatly appreciate it. If not, that’s okay too. I think it helped a little to get this all written down.1) Does this sound like BFS to you?2) If my CK levels are okay and my EMG/NCS are clean what does that rule out?3) How long should it take to get the lab results back from the blood test?a. I should also mention here that I have anxiety around hearing that my blood is “just fine.” It leads me closer to the conclusion that it may in fact be MS.4) Anyone experiencing our symptoms been prescribed Voltaren or Flexeril? I just wonder about the timing of all of this coinciding with the start of these meds.5) Does anyone think the issue with the muscle in my side could be related or are these 2 separate conditions?Well that’s it for now. I will of course be willing to answer any questions that anyone may have and I will also continue to update this thread with any news or results that I get.Thanks,Brandon

 

[twinTwosome]

Just getting a chance to answer your questions:1. Sound like BFS to me.2. Rules out all the nasty stuff, especially ALS3. Blood tests usually take about 3 days in my experience4. No meds for me (except zoloft for anxiety)5. Can't answer that oneEverything you describe sounds typical for this board. BFS and a healthy dose of health anxiety. Welcome to the club!Becky

 

[bfhopeful2]

you got some neck issues but only spinal cord impingment would cause the twitching. Clean emg is huge...means your not dying...mri if done with contrast will rule out Ms...i think you just have anxiety.

 

[AllGoodHere]

Hi Brandon, it seems strange that as I read your post I found myself smiling...no I'm not cruel normally, but it sounds so eerily familiar it really took me back to a few years ago. The increased injuries, the DDD, the rheum, the neuro, tests, it is like we are in some similar parallel pattern. Even the stabbing pains (my family called it Voodoo), the water sensations, etc. What can I say? It all started in 2006 for me and I am now much better, back to doing physically demanding stuff and not the least bit concerned about sensory stuff which still occurs from time to time. A few points - degenerative disk disease is very common - most people over 30 have some and it increases with age but most have no symptoms. The sensory stuff is weird but you will find ways to deal with it. Flexeril may work (I took the time-released version) but it is designed for SHORT TERM use - habit forming, etc., read the lit on it and you will see. Sounds like BFS/BCFS (variant where you get tense muscles over long periods). It also sounds like the docs ruled out all the nasty stuff - you should really ask them about this though - they have both your test results and medical degrees.So don't let any of this get in the way of your life; do NOT stop moving but find ways of coping - alter your physical stuff, adapt. Not being physical is a bad solution - you get weaker, your body has less muscular support, you slow down your metabolism and decrease circulation, etc. Please don't let this get between you and your loved ones - what they will feel is that you are self-absorbed and not with them in spirit. Check your stress levels and try to find ways of getting them down.If you want any coping strategies I've got em. Not on here regularly anymore (disappear when work/life gets demanding) but you can PM me. The forum group has lots of symptom mgmt and coping stuff so just post or search selectively to get responses. You'll be fine. you are just behind me a few years but on a similar path and I'm pretty much back to old self.

 

[harmonyhd]

Hi Twin2, BSFHopeful, SilverBullet and AllGoodHere. I want to thank each of you for taking the time to respond to my post. I'd especially like to thank SilverBullet and AllGoodHere for their lengthy andthoughtful responses. I'm still struggling with this but, while I wouldn't wish this thing on anyone, it's good to know I'm not alone. Sorry it's taken me a few days to respond, I've been doing my best to try and ignore the symptoms when they arise (like my thigh twitching as I type this!) and move on with my life. Obviously I'm back here today because I'm not doing such a great job of it. I suppose I need to be patient with myself but as new sensory things pop up I am thrust right back into anxiety mode. Ah well....By way of an update, I received some of the results from the 13 blood samples taken by the neuro. Not all of them are back yet but those that are (B12, VitD, Lyme's, CK) all came back normal. As I mentioned in my earlier post I'm somewhat torn about these results. I was hoping fopr a simple diagnosis of low B12 etc. With that now ruled out it leaves me continuing to avoid thinking my worst (MS) fears. I suppose time will tell.AllGoodHere - I hope you don't mind but I plan to blatantly steal the description of "voodoo" you and your family use. I think this is the perfect descrption of several of my symptoms. Not to mention I get a kick out of imagining that somewhere in this world is an ex-girlfriend who has a little doll-like version of me she sticks with pins & darts and throws hot & cold water on from time to time I also appreciate your advice about not withdrawing into myself. I needed this reminder, thanks.Next steps: 3 MRI's this Thursday, follow-up with the rheumotologist on Friday and then back to the neuro on the 4th for the results. I will continue to update this thread with answers (or lack of them) as I get them.Bless the good people who post here and bless those who take the time to respond to us "newbies". I will do my best to pay it forward.B

 

[AllGoodHere]

Good luck with the MRIs, B. I didn't mention that my MRI showed ruptured discs which caused the knee-buckling stabs I felt in my back. I still feel that the ruptures may have been brought on by the BCFS but my neuro does not. Don't be disappointed if all the tests show nothing though as that is often the case - lots of theories come and go here and in general but we have seen very few here that resolved their symptoms from testing. I remember just a handful (severe deficiencies, one mitochondrial disorder, a few lyme cases). The site admin may have a broader view of this so maybe ask them. The best you can do at this point is to take good care of yourself - balance your diet and life as best as you can. Voodoo is not just a theory here in Miami unfortunately as there are people that actually practice it but I won't get into it here .