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  • mimi1028
    Hi. My story is I am a active 45 year old wife  mom and gma. I have been struggling with fatigue and pain sine 2017 when I had a benign tumor removed from abdomen that healed but subsequently gave me aggressive scar tissue which led to hyster which led to severe wound infection which led to cellulitis and hospitalization and many antibiotics through2018. Nothing ever seemed right since then which led to rhemotologist (2019) running mutliple test for diagnosis of hashimotos well that explainded the fatigue but thyroid levels were good but very symptompatic so went to multiple ebdos and one overmedicating me which led to A fib (july)and hospitalization. Needeless to say I am on anxiety depressed mode which led to multiple visits to hospital ER thinking i was having stroke because of headaches and anxiety attacks. Which led to MRI of brain. The hospital doctors said I did not have a stroke but had an a small are demyelinating plaque and was not MS followed up w/neurologist who also said no MS but could be from history of migraine(age 12). But that didn't sit right wih me. My vision changed, I also have internal shaking almost quivering in the upper body that only happened in the mornings but has now progessed to all the time especially at rest not painful but concerning. I told all of my doctors who chalked it up to anxiethy.  Not to mention I cry all the time for circumstances of being constantly worried about my heart to not feeling well. But now I cry and depressed all the time which I am seeking therapy for. As I press I was told I have Lyme disease rheumatologist okay now this explains it? completed 2 rounds of antibiotics but no change which led me to 2 ID doctors that ran tests and said that I don't have Lyme. Now I see a MS neurologist that ran physical exam that I don't have any physical symptoms but my MRI may suggest MS so they aordered a MRI of spine which stated I have 2 T2 lesions on dorsel cord. I'm scared about this but he says just more evidence of putting the pieces together. They are suggesting a spinal tap which I don't think my body can take. I am coming off blood thinners and the pain and easily bruising I just can't take right now. My symptoms are internal shaking, numbness (weird feeling) on right side of face, right leg feels heavy, fatigue, joint pain, brain fog, depression, anxiety.neck pain.  I am scared and have a lot going on with overlapping things.  Sorry for the long story but I think it's all connected.  IS thios MS or something else. Has anyone else experience the internal shakes that aren't seen on the outside?  I think it's my central nervous system. Any help or support is appreciated, I am in CT.
  • maria1
    Hello mimi1028, you are now officially a member of the club of those who have seen a zillion doctors, each with their own cause and effect ailment, welcome,aint it fun? It is good you are working on the anxiety, it takes too much energy. With all that you have been through, being a mother and grandmother I am surprised anything bothers you. Being a parent is a tough job, being a patient is a lot easier. We can not and will not say it is ms, all we can say is maybe, because we are not medical professionals, well maybe some of us are, but we have been requested not to diagnose on this site, for obvious reasons. We always work on the worst symptom first, whatever bothers us the most we pay attention to and then move on from there. since our immune systems are comprimised we all have other issues besides ms, and that clouds diagnosis and treatment, but we plod along looking for relief. And sometimes we get the wrong information, and move on from there. Just dont give up working on feeling better, we can cheer you on and hopefully cheer you up. We appreciate your sharing and wish we had a pill to fix it all for you. maria
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    Really think that you need that spinal tap.  You can start treatment with much needed medicines once they get a diagnosis.  May save your life!
  • dkramer
    Really glad you are seeking therapy, this sounds like you are really going through it right now! I was diagnosed with MS in 2010. MS is tricky and complex, and can look like other diseases, and other diseases can look like MS! 

    I have 3 quick suggestions for you.
    1. The MS Navigators would be a great resource for you right now, and helpful to redirecting you as to what some of the options are for you as far as finding experts ect.
    2. Keep a written log of the symptoms you are experiencing, location, when it starts ect.
    3. There is no one test for MS, it is a puzzle for sure. If your doctor is recommending a LP, I would be following that recommendation. That may be the final puzzle piece you need. 

    Best of luck! 
  • MellyK
    I feel the same as you. I am trying not to overthink but its easily said than done.

    I am a big baby and had to have a lumbar puncture which I really didn't want BUT glad I did as you will then know for certain they are doing a thorough job in trying to work out what the matter is.

    2 lesions seems OK to me .. I have multiple !! ...

    I would say just say go for it. If I can anyone can..I am.terrified myself and have to wait 2weeks for the results but am trying all I can to calm myself and not over think... I even went and had acupuncture today to try calm me down 

    Thinking of you