Newbie Seeking MS Diagnosis

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mommyLDN

Well-known member
I'm fairly new to posting here, but have been reading things for a while. I wanted to be sure about my diagnosis before I posted (or as sure as I can get). A little background. I was primarily concerned about MS, not the other one. Why? Well, my "symptoms" started me down a track that got me to research (via Google) MS first, not ALS. And I guess you never get over your first self diagnosed disease. So here's the progression of my symptoms.Late July - Headaches. Check with PCP and optometrist, but neither find anything significant. Suggest stress from wife's pregnancy, full time work, and part time graduate school studies. Plus an upcoming 2 week trip to Asia. In retrospect, duh, but I don't do anything about it. Funny enough, when I am in Asia and not worried about anything, I feel fine.October - Headaches still there, plus now I am having vision issues. Seems to be concentrated in right eye. Optometrist suggests dry eyes, which seem to help for brief periods.November - Twitching starts. Initially in my left bicep. Last for a week and goes away. Then moves to my left tricep and stays there for a week. The muscle above my ear is next and this one lasts for about two weeks. January - Full freak out mode. Baby coming in one month. Plus now I have started twitching in both calves and it isn't going away like the previous ones. I also notice double vision in one eye. It has been blurry for since late October, but this really worries me. My wife finally convinces me to make return visits to the optometrist and the PCP.February - Break down followed by relief (temporary). After convincing myself that I absolutely had MS the night before going to see the doctor due to tingling hands and feet the night before, I get a different diagnosis from the doctors. The PCP checks me out and notices that my right eye still has 20/20 vision, its just my corrected vision in my left eye is much better. But the double vision convinces her to send me to an ophthalmologist. He checks me out and says NO optic neuritis. Instead, I have an uncorrected astigmatism. With only twitching left, the neurologist laughs off my suggestion of MS. It seems that this isn't a common first symptom of MS. She thought I was seeing her about fears of ALS, but does a quick check of me just to be sure. Her initial diagnosis - too much adrenaline, not enough stress relief. Probably didn't help that I had run a marathon back in June and pretty much given up on running due to time constraints. Whoops. Optometrist confirms the astigmatism correction and I can see at night again.June - Freak out again. Legs are still twitching. A month earlier, I needed to get a revision to my astimatism correction. It was getting better. Also, periodically my pinky toe would go numb. This probably stems from me curling my toes when my foot would tingle, even if I was walking. When my correction was changing, I started to get odd sensations in my left forearm. Sometimes it felt like burning, sometimes it felt tense. I could feel a twitching on the outside of my elbow if held my hand against it, but I couldn't see it. My neuro was still unconvinced, but humored me with an MRI. I was sure that this was going to be the smoking gun that would prove me right over the multitude of doctors (including my own brother) who seemed to disagree with me. It seems though that Dr. Google led me wrong on this one. The neuro, after a little prodding from me, emailed me back indicating that she didn't see anything abnormal on my MRI.So, as a recap, here is what we were looking at. I managed to toss out the fact that the symptoms were transitory and figured I would be exception to the rule. Bad idea.Headaches - CheckVision change in one eye - CheckTwitching - CheckBurning Sensation - CheckNumbness - Check MS or ALS - Nope :D) Sorry for the lengthy message, but I hope this helps someone else who has been stressed out about symptoms other than only twitching. The only other advice I can provide is to decide what level of proof you need before you will believe your doctors. It may be a clinical exam, an MRI, an EMG, or something else. If you aren't going to believe the results unless it confirms your results, is there any value?Thanks to all of the board members who helped put my mind at ease that other people had seen similar situations.
 
My best advice is belive your doctors. I have had bodywide twitching for 14 months now. I am very lucky I do not have many of the other symptoms other people have here such as cramps, tingling, pain ect.. but I can tell you that the anxiety from this will kill you before the twitches. It took me a long time to get over the fear. Please, if you have doubts, get a second opinion. If that neuro tells you that you are fine please believe them. This crap almost destroyed my life. Be reassured that your symptoms don't sound any different than many other people on this board. Read through the archives if you must. The people on this board really did save me and there is some great advice on here. Hang in there. I'm sure your going to be fine. I also know that many people have brisk relexes. ~Leslie
 
Oh and the weird dizziness, and I understand what you mean about how this can destroy somebody, If I turn out to be ok, I will live to help new people on here calm down, this is terrible. :whistle:
 
I have read about clonus on here. I'm not even sure what it is though. Are you sure the diziness isn't from your anxiety? You would be surprised at what anxiety can do to you. Please talk with your doctor about all your symptoms. They are the ones who can truely help you.
 
Hi ML. I wrote this in my journal on December 26, 2007 (2.5 years ago):---Been experiencing lots of weird symptoms lately:1. Three weeks: Strange feeling of my face/head being hot. Does this at seemingly random times, especially during stress. Also does it if I lean over so that my head is perpendicular to the ground or slightly upside down.2. Three weeks: Bad itching off and on. At times I'll be scratching like a lunatic and at other times I won't even be thinking about it.3. Three years: For the past 3 years I've had a gradually progressively worse feeling of having a walking abnormality. I just feel weird when I walk, similar to if my leg (especially the left) were stiff or not quite 100% in control.---This is just one entry in my journal. Other entries have covered every other symptom you've listed (including clonus). What I'm trying to say is that I've had every symptom you've had, and I've had them for years. The feeling of being unbalanced when I walk - I've had for about 5.5 years. I used to obsess at watching myself walk in the refelection of windows to SEE something that I was FEELING. I couldn't understand why nobody commented on my unbalanced, stiff-seeming walk and perceived weakness in my legs/ankle/foot. 5.5 years later, still walking, still have the problem. If it's gotten any worse, it's imperceptible to me.I've been twitching all over for over 2.5 years now and just like you, I feel very weak but no clinical weakness that I can find. You've seen a neurologist, you're fine.
 
Oh thank u, thank u, thank u, for posting this response, I so wish I had been on this board all along instead of the scary forum. I absorbed to much of what the PLSers where discribing there and I thought I fit rite in. But seriously thank you so much for letting me know I'm not alone, I sitting here debating if I should keep my Neuro app that I made for today or just let it go. Hmmmm?/
 
Keep the appointment! Go and let them reassure you... it really is the best reassurance you can get. Please understand that for many of us, these symptoms do not just stop, but continue for months and years. The best treatment is knocking out the anxiety part of it.It wasn't until I sat down with my regular doctor and discussed my fears and anxiety with him that he understood and gave me some medication for it. Once I got on gabapentin (anti-seizure meds) and an anti-anxiety med, I was finally able to realize just how bad the anxiety was and how much it really was screwing me up. The anxiety is by far the worst part of this syndrome, and you need to harness it and control it!!! It's the only way out, I promise you.I had the lump in the throat feeling, a constant anxious feeling, more twitching than I have now and stomach pain. I also have Celiac disease, but this way ANXIETY-induced stomach pain. And as soon as I got the anxiety under control, the stomach issues improved. Talk to a doctor, embrace the anxiety and fight it.AND FOR GOD'S SAKE, KEEP THAT APPOINTMENT FOR REASSURANCE!!!-Ant
 
I understand what you are saying, I do. And yes my anxiety is bad, but mostley because of the fact that I have the ankle clonus, and I know I'm not supposed to have it, Kinda of like if I was to have a possitive Babinski sign, you know its nots supposed to be possitive and you know it means something bad, I dont have a possitive Babinski but the ankle clonus could very well mean something pathological, and I'm very scared. The twitching is really just an anoyence to me and not my main focus of fear. I'm so freaking scared rite now, I dont even know how I'm going to get through this app without him thinking I am a total nut job, and actually see that I am having trouble walking, but at the same time I'm hoping he will still say there is nothing wrong, my thinking is really twisted up rite now. But thank you for responding.
 
I just PMed you, So glad you made it to this site, please don't go back to the A word site. Your symptoms sound like so many others here, not the A word. I am no neuro but brisk reflexes could very well be from anxiety. Anxiety is the worst part, still is for me. All your visits to different neuros, someone would see if you had neurological deficits. Remember A word does not hide, and you have four months under your belt.
 
Hi LMQuote ''I have been to the same Neuro 3 times and I go again tomorrow, and he is blaming my brisk reflexes and even the clonus on anxiety''When I saw a professor of neurology nearly two years ago he stated he could tell immediately if MND was likely the minute the patient walked through his door. Please try to overcome your anxiety issues (easier said than done I know) and just maybe everything else will start to ease.Good luck with your appointment.Take care.Dav.
 
Thank you Runningbear and Davo for responding to my post, I will post after my Neuro app today to let you both know what he says. Its at 4 so I still got 2 and a half hours to breathe through. This is aweful, I wish I didnt have the ankle clonus, I could deal with knowing I have the other brisk reflexes but the clonus just sits in the background as something omonis and pathological. But thank you both for your patience in reading my post and for your possitive words.
 
Mario, I have got to people helping walk in the office today, trust me there is a problem, I'm telling you I'm going to be your first one on here, I will post as soon as I get back. Still have a hour and a half till app.
 
Hey, Tripper & mommyLDN--The "Fibro connection"....would answer a LOTTA questions for me! :( (As you well know, Robynn)-Along with this "temporary"....loss of balance--I have the soreness in the rib cage area--! :rolleyes: Hoping the Mayo Clinic answers some questions-! (Sorry I did not call you back--Robynn....I'll call tomorrow, honest) :) ---CPS...Robynn...relax, you'll be fine! ;)
 
Last August I was not sure I would be able to go to Dollywood with my husband and kids and not have to get a wheelchair as my right leg would shake internally after some very seriously intense twitches for four days that made that leg seem weak. Today, almost a year later, I push mowed our entire yard (which is a horribly big yard!!) without issue. I still have issues when I overdo things with my right side. I just got back from my Neuro Tuesday and had another clean EMG. He saw no true weakness. I had stomach issues last year, bedwetting, choking in my sleep, all over body twitches, etc. It was all very real. The longer this goes on you learn how to breathe with it. It is that or you will end up in a white jacket, you pick!! :) Seriously, take a breath, pray, do know there are friends out here that suffer with things that are bothersome and can be scary. Breath in, breath out.
 

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