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  • szaidinski@gmail.com
    Hey All, 

    I am new here and I am new to the idea of MS. I started out as a "it is all in your head, and no I am not giving you pain meds", then "Fibromyalgia for sure!" and finally now "perhaps we need to look into neuromuscular and MS". I have had a REALLY long battle these past 5 years. Including a completely clear brain MRI - Cervical being done this weekend.

    Good days I just have muscle "tics", hot tight pain running all down my back through my  shoulders, zaps up and down my arms and fatigue. Sometimes my eyes feel like they are being poked out and I was diagnosed with an Auditory Processing Disorder because what I hear is not what I process. 

    Bad days my legs feel like concrete and it is hard to move forward. Going down stairs makes me look like a drunk person. I can't keep my eyes open but I can sleep because my body feels like it is vibrating. I have trouble thinking and expressing myself. Words don't come easy or I use the wrong ones. 

    I try hot baths but that seems like a either a huge yay or a huge no and I don't want to chance the no again. I felt weak, shakey and was in bed for the rest of the night. PT sort of helps but sometimes triggers it as well. 

    I am scared, exhausted and frustrated looking for the correct answer for me. Does this sound familiar to anyone else?
  • bubbadog66
    I just got told the "it's all in my head" is in my head & spine back in Dec 2016. I miss my mind and not being able to drive the most. My neck gets crippling stiff until i medicate it cannibus. Instead of anxiety driven depression headaches i get feet aches...numb, burning, itching, sore, pins and needles...make walking difficult with leg spasticity....the list goes on.

    So, you're not alone...i'm relatively new here and find this one of the better places to learn about MY MS. One day one moment at a time!!! 
  • szaidinski@gmail.com
    OMG yes, I miss having my brain in order. I feel like my brain is just swimming around sometimes where none of my thoughts are making any connections. I miss being sharp and on point.

    I use cannibis to kind of help me as well. At least it helps with getting me to sleep when I have had none for a few days.

    Thank you!
  • tamnmark4ever
    It sounds like MS but also CIDP. My husband has MS and his buddy has CIDP. I hope you get a diagnosis
  • szaidinski@gmail.com
    CIDP... first time I am hearing this but another great thing to look into and keep in mind during this journey.

    Thank you so much!
  • CathyHammer
    hot baths are great, perhaps take it earlier in day, also use Epsom salts and I add baking soda and essential oils to the water as well. keep up magnesium for spasms and spascity issues. On cannabis, have you tried CBD oil? It doesn't give you the head high, but really works well for pain control and spasms. Educate yourself, it can be overwhelming, but when I read articles, I get that *AHA* moment. But most of all remember, You are a MS WARRIOR!
  • szaidinski@gmail.com
    My brother is going to get me some CBD oil that his friend makes. He grows in Colorado and makes his own stuff and everything from him up to this point has been spot on. I heard NOTHING but GOOD things about it so I am pretty excited!

    Baths right now are a no no. I almost passed out the last time I took a nice soothing bath with Epsom salts and a LUSH bath bomb (which are my two favorite things!). But I have been heating my back and taking LOTS of nice showers which has been helping!

    Thank you so so much! I have to remember that I am MUCH stronger than I feel.
  • annixandra
    it wont let me reply to this comments reply so i thought i would put it in this one the baths may be an issue because you are taking your body temp up all the wa around you with the warm water  i was reading something earlier about some people can handle temp changes (extreame temps hot or cold) can trigger your symptoms or make them worse  hopefully this helps with the bath and  ya cannabis is very helpful with the spasming
  • MS_Navigator_Steph
    Hello,

    I am glad you are seeing a doctor and getting some tests done to help figure out what is causing your symptoms. I included some information below that describes ‘possible MS’ and what to expect in the diagnostic process. I hope it is helpful.

    Possible MS

    Diagnosing Tools

    Other Conditions to Rule Out

    Best,
    MS Navigator Stephanie 

  • szaidinski@gmail.com
    Thanks Steph!

    Yeah we are at the point where all the autoimmune are ruled out, Thyroid, Celiac, as well as any vitamin deficiencies. So neuromusculare is where we are sitting at since my leg muscles are having a dance party and my back feels like someone is pulling it apart.

    Just went for a Cervical MRI and I got to the Neuro tomorrow so we will see what happens. I really hope that we can start moving in a better direction as I am afraid that I may become disabled if we don't start treating whatever this is, MS or some other neuromuscular disease.
  • Oma
    Hello Stephanie,  I don't have a diagnosis yet but have just started getting a neurologist to do some testing. I have 12 of this websites listed symptoms all within the last 4 months. Fatigue, walking, speech, balance, sleep and vibration like feelings are the biggest challengesurprise for me. I started keeping a daily journal to list new symptoms and when they started, how frequently they occur etc...  You are not alone in this. Be patient and seek out specialists that have good reviews. This website is amazing.   I was already a subscriber before my symptoms because my daughter in law was diagnosed 2 yrs ago. I started thinking it was in my head psychologically due to severe stress the months before but I know my body better than that and realized I needed a specialist. I found a caring neurologist within 30 min drive and also making appointment with University Hospital further away after I have some test results to show her. 
     
  • szaidinski@gmail.com
    I keep a daily bullet journal myself because I feel like it keeps me grounded. If I track everything then I can reassure myself that I am not going crazy. I had a really abusive MD before my current one that insisted all I wanted was painkillers and that it was all in my head (I never even hinted that I needed or wanted them BTW).

    I am going to my first Neurologist appointment tomorrow so I am hoping that everything will move in the right direction at this point! The office is a well recommended office so while I don't want to get my hopes up I am eager ro hear what they have to say!
  • leeza
    Yes I can relate. I have a 20 year old closed head injury where I also had a stroke on my left side. I have visual deficits from that. Then MS was officially added (I believe I have had since age 4 now I'm 50). I also have COPD. Everyday something is malfunctioning lol. I almost always have some visual obstacle blurry or standard visual field cuts . When I'm tired my breathing is well worse. I have cramps in my left calf. Pain in my right butt and last week almost bite my tongue off trying to eat a salad. Almost everyday has a disaster of sorts. Frustration is Normal. On a good day with no disasters I still misplaced something,dropped something, forgot the name of something. It's all in a days life. I have come up with some solutions. Like the day after my injection if I don't feel well I don't do much. This is a 100 percent self care day. When I cook I make meals for more than one day. I no longer shower everyday unless it's hot. I wash up. This has helped me to function. I hope you too will find ways to make life easier. Take care
  • szaidinski@gmail.com
    My husband and I at this point just laugh about my daily health ongoings. Like this morning I was struggling to pour coffee into a cup and he goes "So how is that coordination going there?" I feel like if I don't laugh and at least keep a positive attitude I am going to lose it since it has been such a struggle!

    Thank you so so much! <3
  • tguida
    I'm in the same boat. I'm seeing a neurologist on Friday and I'm super scared. I've been dealing with symptoms for a couple of years but the last few weeks have been unbearable. Stabbing pains down both my arms and legs, tremors in my left hand, tingling in some of my fingers and toes, dizziness, sometimes I literally cannot think of the words that I want to say. The other day I was so tired the thought of doing anything was just unbearable... is it normal to have a symptom one day but not the next? Because donde days I'm so exhausted...i mean like bone achingly exhausted and then the next day I don't feel like that.

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