Old 01-21-2017, 12:50 AM #1 (permalink)
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Default My Story

Hello and thank you all for your time and consideration. I'm going to start from the beginning and try to be as thorough as I can. I am a 24 year old male and I have been having fatigue for many years. I have also been on Paxil for anxiety since shortly after graduating highschool. Over the last couple years I had felt like I was suffering from cognitive impairment due to Paxil and decided I would taper off of it at the start of 2016. I tapered very slowly over the course of several months and took my last tiny dose on OCT 30th 2016.

For quite some time (probably at least a year) i had strange sensations in hands and feet occasionally that I can only describe as some sort of vibration or internal tremor. I have had these symptoms for a while but new to 2016 was pain that seemed to be everywhere, muscle or what seems like bone pain (some even felt like what I can only describe as "growing pains" and it seemed odd to be having this kind of pain now.). I eat a lot of sweets and junk food so in the late summer of 2016 I decided to see a new GP and have a full physical and blood work. I knew of diabetes' effect on your extremedes so I was half expecting to be told that's what it is.

When the blood work came back it was ANA positive, low vitamin D and high cholesterol. ANA titer was 1/80 and I by this time I had developed other weird symptoms like pins and needles on my hands and sometimes other places. I have been feeling weak for a while (perceived). the PA said this sounds like multiple schlerosis so he suggested an MRI of my brain. I had it done on a 1.5 T machine with contrast. The MRI came back normal with no problems. I was then referred to a rheumatologist but I had to wait until late November to get in.

On Halloween I was at a club until late and noticed by back was so week it felt like I almost couldn't hold myself up by the time I was done, like every muscle was flexing around my abdomen and back just to support me and I did everything I could to not be hunched over and I hope I didn't appear that way. I was not active at all in the club I really don't dance so it's not like I exerted myself I was really just standing in the middle of a bunch of people for hours.

When I finally saw the rheumatologist in late Nov he had me redo all the blood work because the ANA titer was low and could just be lab error. When the bloodwork came back my ANA had increased 1/160 and all the specific tests for arthritis/lupus and a few other things came back negative. The doctor said I may or may not have "mild" lupus and started me on 400mg of Plaquenil for 6 months to see if it helps. At this point I have also had twitching in my muscles and cramps for a couple months. I spent all of November and much of December going to the gym 5 days a week, eating well and suplementing with whey protein. I eventually stopped going to the gym completely because it just felt like I was making no progress despite all the work I had been doing. It's like my muscles would give out before they even got any kind of workout. It was really disheartening.

I've been feeling so awful and felt like my symptoms extended beyond the scope of lupus so I went back to the GP's office this time to see the nurse practitioner to request a referral to a neurologist since I had symptoms I felt were more neurological in origin. By this time my left hand has been pins and needles almost constantly and have twitches that are really bothersome. The twitches seem to jump around almost everywhere but seem to have a few favorite places like my left lower back and next to my knee/elbow/side of lower leg, or next to my pectoral. The twitches range from dramatic feeling like I'm being flicked to a constant buzzing feeling and are almost always present somewhere. I am also very shaky now all the time. The kind of shakey that feels like I just had an intense work out with weights or like when you are maxing out with weights and your muscles get shakey. I am only shakey when I'm moving something or doing something with my hand. Almost like my arms are too heavy for themselves. I had always been worried about having MS. Several months ago I got scared about ALS but dismissed it because of pain and sensory problems that I know aren't typically associated with ALS.

I met with the nurse practioner and told her everything including how I went off Paxil thinking it was contributing to symptoms but now that I've been off it a few months it seems the fatigue wasn't related and symptoms have greatly progressed. She agreed that didn't seem to be the cause and gave me a full examination. When I held my arms straight out she did say that I have a slight tremor. This was kind of scary to hear someone else say. With my arms straight out in the same way with my palms down she pushed down on top of them and told me to resist. It was weird she was definetly overpowering me. She said there was definely weakness. This hit me hard like time stopped and I was just like... the whole perceived weakness thing is gone now. I couldn't summon strength to my arms when needed. She did a similar test to my legs and said that my legs were "stronger" than my arms. Which makes sense, and specifically that my left leg is stronger than the right. When she tested my rexlexes I remember her making a comment when she struck under my knee about them being sensitive. When I watched her typing up a report or something on the computer for the neurologist referrel she used words like hyperreflexia, diskynesia, dystonia, and progressive weakness. She was typing a lot and told me to go to the counter and stuff because she was going to add more "meat and potatoes" to whatever she was typing and there was no reason for me to sit there and wait. I've since looked up hyperreflexia and know how that relates to motor neurons so now I'm all kind of nervous when combining that with actual weakness and fasciculations. I have also noticed atrophy in my chest but no where else which is weird (mostly right side.).

If waiting for the neurologist was anything like waiting for the rheumatologist it can be a month or two. I understand this is long and I don't want anyone to have to feel obligated to like answer or help me out I finally gave in and decided to post to like vent I guess. So if anyone is bored and wants to read here it is. I understand that the members of this board have probably seen and heard everything since I have been reading much of it. So I value and trust any input.
-thank you
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Old 01-21-2017, 01:24 AM #2 (permalink)
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Default Re: My Story

I'm not seeing ALS in there. Someone will be along in the morning to explain better, I'm sure.
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Old 01-21-2017, 02:27 AM #3 (permalink)
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Default Re: My Story

Hi, A,

Not seeing ALS but not lupus either (it cannot be dx'd simply on an ANA of 1:160 -- seriously?) and Plaquenil is not a joke. It could be causing some of your sx. I would see a 2nd rheumie with a view toward discontinuing it and being re-evaluated.

Best,
Laurie
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Old 01-21-2017, 01:32 PM #4 (permalink)
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Thanks for the quick responses and taking the time to read all of that. I've read a lot of the newly diagnosed posts and followed them back to when they had their "is this ALS" posts. I've noticed people will swear up and down it's not als but then there they are making their diagnosis post some time later. I'm also wondering how many people that are later diagnosed need to have sensory and pain issues before those symptoms no longer point away from als. At this point I don't think there's anything that can ease my anxiety and I'm hoping I only have MS or SLE. I can only wait for my EMG and idk when that will be. I really hope I'm not going to be coming back to make my diagnosis post. I hope I'm not part this trend and I can come back here and have you guys say I told you so.
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Old 01-24-2017, 12:20 AM #5 (permalink)
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Default Re: My Story

If not als does anyone know of anything similar that starts in the chest/back? These twitches feel far from benign and I feel like whatever I have just kicked into overdrive. It feels like I'm losing my arms it feels horrible. People have made it seem like they don't notice losing strength but I am noticing. My pecs are gone, my upper back is flat and lower back is caved in. Things seem like they are starting proximally and working out. When I hold my arms out they don't feel like my arms and these twitches are hitting all around my rib cage some even moving my fingers.
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