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2 years of symptoms

Hi everyone. I'm a 45 year old male. It started out in March of 21. I noticed I was getting eye and calf twitching. I googled twitching and that sent me down the als rabbit hole cause I had a cousin that died of als. In April of 21. I get an emg and comes back clean. In May I see a neurologist and ordered a brain mri and every kind of blood work that is associated with muscle spasms. Blood work came back fine. The mri showed t1 t2 signal loss and small foci of the white matter. Neurologist said mri was normal. My muscle spasms in the next 4 months keep getting worse and start to spread throughout my whole body. In October of 21 I see a new neurologist and ordered another emg. Came back clean. That eased my mind of als. In late November of 21. I started getting these weird electrical buzzing vibrations in my right leg and about 2 weeks later I would get this electric pulse that would start in my head and go down my arm and as soon as it ended. I would end up with a muscle spasm in my arm where the electric pulse ended. So for the next 2 months. I dealt with the spasms and weird sensations until I woke up in the middle of the night and my entire left was paralyzed for about a minute. Then all of the sudden I got feeling back with pins and needles. I freaked out and called my neurologist next morning. He ordered a lumbar mri scan. I was diagnosed with degenerative disc disease on l5-s1 disc. I went and seen a back doctor about injury and told me it was mild and should have no impact on muscle spasms or causing my leg to go paralyzed cause there was no impingement on nerve. In March of 22. I started getting this weird feeling in my left arm as if someone was slightly grasping it. This lasted about 2 weeks and went away in a blink of an eye. Then about a month later I started to get the exact same feeling in my left shin area. It almost feels like I had weights on my shin for about 2 weeks and then went away in a blink of an eye.i still get these weird feelings in my arm and shins as of today. They come and go.In May of 22. I started getting these weird jerks. I could be sitting there and all of a sudden my whole right arm would jerk. I still get these random jerks today. Probably in June or July of 22. I started getting muscle cramping and stiffness in both my hamstrings and still get this today. It comes and goes. During this time. I would get random pins and needles in my arms and legs. I also started getting pain with my muscle spasms and pain in my knees and hands. My regular doctor recommended me go see a rheumatologist. He thought I had symptoms of fibromyalgia. I see my rheumatologist a month later and explained all my symptoms and the first thing he asked me if I seen a neurologist and checked for Ms. He did a bunch of blood work and I tested positive for sjogren's syndrome. I had a positive ana test and anti-ssa antibody. He started me on plaquenil which helps with sjogren's. I started taking it for 3 months and didn't seem to help. I don't understand sjogren's. The disease mainly affects your tear and saliva glands. I don't have any tear or saliva problems. For 3 months I kept dealing with the spasms, pins and needles, bone pain etc. In these 3 months. I started experiencing certain places only going numb. For instance. My big toe would go numb and then turn to pins and needles. My left forearm would go numb and then turn to pins and needle. Just three days ago my left side of my hand went numb and then pin and needles. About 2 hours later I get weird feeling on top of my hand. Right below my middle knuckle. I get the weird feeling and goes away and starts to muscle twitch. After 3 months of this. I go back to my rheumatologist for checkup. He didn't really tell me anything different. After I seen the doctor. I went to the lab to get more blood work. I checkout and make follow appoint in April of 23. I got my blood work back in 2 weeks and tested negative for sjorgrens. My ana and anti-ssa was negative. I called the doctor 3 times and never got back to me. I quit taking the plaquenil since I test negative and doctor never got back to me. Since I quit taking it. I haven't hardly had any joint pain but in last 3 months I've had major neck pain and stiffness in my shoulders. I've just got to the point to deal with what ever I have. To this day. I still have chronic muscle spasms. My muscle spasms only bother me when relaxed or laying down. My muscle spasms have been consistently in my eyes,calfs,feet and most recently in my left elbow. I still get the random numbness and pins and needles in certain areas. Every now and then chronic fatigue. Tongue tingling. Weakness in my upper arms. Stiff and tightness in hamstring muscles. This is becoming more and more onset. I was just diagnosed with stigmata in both eyes and need glasses. I've been dealing with this over 2 years and really no diagnoses. Just frustrating. Some doctors tell me to be patient. It can take years to get a diagnosis of some source but have the symptoms with no evidence. I see my als specialist in may and hopefully he recommends me a ms specialist

  1. Hi . Welcome to the community! You will find lots of support here, especially from people who had a long road to diagnosis. So many autoimmune diseases share symptoms that it can be hard for doctors to settle on a diagnosis until something develops that pushes them in a more definitive direction. That is probably what your doctor meant about being patient. That is easily said as a doctor, but extremely hard to accept as a patient. I am glad you are continuing to advocate for yourself and look for answers. Several health conditions share symptoms with MS and should be ruled out before making a diagnosis. Here is an article that lists them: It might be worthwhile to look this over and see whether your doctors have eliminated all other possibilities. I hope you do get that referral to an MS specialist. The National MS Society has a tool for finding one in your area. Here is a link: An MS specialist might recommend a lumbar puncture, which tests for proteins that normally appear in the spinal fluid of people with MS. That would help tremendously in deciding whether you are looking in the right direction for a diagnosis. The diagnosis of Sjogren's syndrome was an odd one for sure. The two primary symptoms of Sjogren's syndrome are dry eyes and dry mouth. You haven't mentioned that you have experienced either. If you need a rheumatologist again, you might want to consider finding someone new. I hope you get some answers or at least some help in finding them at your upcoming appointment. Please know we are here for you as you go through all this. Thinking of you. - Lori (Team Member)

    1. Hey! I have so much empathy for you as I feel I have been going through a similar thing for the last two years except probably not as severe.
      I used to run 15kms 4 times a week but now I’m lucky to do half an hour on a stationary bike.
      Muscle soreness and stiffness, joint pain, pins and needles in all limbs, muscle twitching, dizziness. I spent thousand of dollars on doctors appointments. Tested positive to ANA but nothing further and clear MRI other than a chronic sinus infection.
      I got pregnant and my symptoms disappeared until now (8 months post partum) where the dizziness returned and joint and muscle pain, muscle twitching and Pins and needles,
      I really don’t know if I have the energy to pursue more diagnostic testing. I feel what I’m dealing with at the moment has a big impact on my life but I can deal. So I’m just pushing on in the hopes that it stays relatively mild or goes away,
      This is one of the most exhausting things to go through, the not knowing.

      I hope you have lots of support and get a resolution soon. You are not alone; even though I’m sure that doesn’t help!

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