First off, I would like to say that I am not diagnosed with MS but highly likely.
I am 36, happily married, with 2 wonderful kids.
My cousin has MS diagnosed in 2005. I had no idea she had any problems until I was rushed to the ER for "stroke like" symptoms. I called my mother and told her I was in the ER so she told me to give my cousin a call. Mind you... I have never spoken to her or even met her. I give her a call and we talk for hours about our crazy off and on symptoms and they are lined up to the T. I didn't feel so "crazy" after that phone call.
I started making a journal of my symptoms, weather changes, time and duration of symptoms, and how long it takes me to recover from my episodes.
My symptoms started in my 20's but brushed them off, thinking it was stress, or lack of physical activity. Eye pain, cheek numbness and foot cramps (right side only) were my very first symptoms back in 2010. I was diagnosis by a Neurologist in 2010 with migraines and was given Maxalt 5 MG. However, he never tested me nor have me a physical exam. He just sat at his desk and wrote out a prescription. Needless to say, Maxalt never worked for me. I never went back to him for my issues since he just brushed me off. I then was fine for a month and thought I was just stressed. Then the eye pain came back. So I figured...go get my eyes checked because I wear glasses I thought maybe my eyes are changing and a new prescription would fix my eye pain. Well, my eye was as healthy as could be with a slight change to my eye sight only in my right eye. New glasses for me! However, about a week later my eye pain started back up but horrific pain in my eye down through my spine in my neck. Weird...right? So I go back to the eye doctor, my eye changed but it reversed back to my previous eye prescription, huh? I didn't know that could happen. I when back and forth to Lens Crafters 5 Times in one year with this problem. I finally just stopped going knowing that my eye sight would get better with time.
Then I started getting a warm feeling in and on my skin, like a drop of warm to hot feeling dripping down my leg. I would look and try to brush a bug or water from my leg but nothing was there. This happened off and on for several years.
I was then noticing that my skin on my right side just felt different from my left side. Fingers and toes started to exhibit a numbness that would come and go with activity. I am a sewer and constantly sewing made my symptoms worse. So I stopped for a while. I then started exhibiting IBS with constipation. Saw a family doctor and got a colonoscopy, with no abnormalities found. So I changed my eating habits and felt fine. Two months later in 2015 I was rushed to the ER with a severe blockage in my large intestine with right side numbness and extreme fatigue. I was actually expecting to here I had cancer because I felt like I My body was looking a battle inside of me. Thank heavens, it wasn't cancer, but they found Adenomyosis in my uterus from 2 c-sesions. So an IUD was placed and I had no symptoms for 2 months. Only then I thought it is over....I can start to look for a job and continue my life. Then it hit me hard for a third time with New symptoms but not the same symptoms as before. I thought I was going crazy. So I saw my Dr. again and was told that I need to see a Therapist for my "vague symptoms" that "happen off and on". I could tell I needed a new doctor after that. So I switched Dr's and have her my journal to read. She rushed an MRI/MRA after a basic physical exam of my balance, reflexes and eye movement abnormalities. I finally received a referral from my new family doctor to see a Neurologist that specializes in MS among other things. After my first fall, speech difficulties, and leg and arm spasms I know this is all linked together and one problem. ER doctors confirmed no stroke, no min stroke. But MS highly likely.
I don't know what is going on with me but I do know something is happening to me that I have no control over.
I have my referral and contacted to start this whole process. Is there anything I should ask my Neurologist on my first visit?
Scared but determined to get my body back!
Thank you reading and I appreciate any feedback, comments, or questions.
Written by
Stepinup
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It sounds like you have pretty much all your symptoms and apx when everything have started. This is the main thing, just don't be "shy" and ask anything that comes to mind during your visit. Keep us informed of what happens.
Hugs. I'm still undiagnosed so dealing with this right now too. I'm on my second neurologist. I stuck with the first one mostly because I thought it made me seem like a mental health patient to fire him and get another one. But it was the best thing I ever did! I hope you find a good neurologist on your first try!
My advice is try to be as organized as possible. Write it all down in a somewhat organized manner. If you are keeping a diary of current symptoms bring that (and this is a really good idea to do!).
I find making a bullet point list of all my most important questions really help. Start with your most important to you question and then work your way down to the least important question. Start with whats bothering your body the most.
Good luck and please keep the board posted!
ps I also had my first symptoms at 20 and in my 20's but brushed them off.
Hi Stepinup and welcome. Sounds like you have been through the wringer a few times now.😢 I'm hoping that will change for you. And pray it's nothing serious. But you are always welcome here😊
As far as your Neurologists goes it sounds like your on top of it. You just need to wait for a DX unfortunately. From there you can make a plan of attack. ☺
Dear Stepinup bring your journal of symptoms to the neuro. Let him/her know @ your cousin. There is increasing info showing heredity and in common gene markers of MS in families. Sending wishes and blessings to you
I too am not yet diagnosed. If I had a pound ( I'm in UK ) for everyone ( especially female - sexism is still alive and kicking in the world of neurology IMO ) who was fobbed off with ' It's all in your head '...
I too was diagnosed with IBS after a barium meal showed no visible issues. Was given the all clear after a camera down the throat for previous transient swallowing issues, believed my occasional 'strangeness' in legs/back pain/joint pain etc stemmed from wear and tear and the nature of my physical job. My worsening blurry eyesight, fatigue, overheating, excess sweating due to my age, my foot cramp/cold hands and feet due to circulation, my calf spasms due to benign fasciculation, my bladder weakness due to having previously had a child, my occasional mystery 'viruses' that decked my blood pressure just an unfortunate incident etc etc etc... Still all very plausible.
Sometimes we are handed the jigsaw pieces one by one and don't even realise that we are supposed to make a picture. Even after a second major attack, following UTI/sepsis and resulting marked disability added to residual disability from first attack, doctors were still trying to fob me off as 'functional symptoms' and refuse referral to neurology. If you can't be taken seriously and gain access the tests you can't rule anything in or out. It does make you wonder just how permanently disabled you have to get before someone will listen...
Just had a third, milder attack over Christmas triggered by a bad cough/cold virus - legs, core, balance again. I know the drill at this point ! I am running out of excuses to comfort myself with - it would be a strange sort of relief if scans show something at this point ( I am awaiting neck/ C spine results ) as I have been denied any form of treatment or support for four years and disabilities are mounting up, making life rather a challenge !
Best of luck to you and to all of us 'hystericals' as we are too often labelled, in finding answers !
I imagine that put a halt to Christmas Stepinup - I slept through mine ! How are you now ? Have you still some lingering problems from your attacks ? x
Good to know they are being thorough. They only did MRI of my brain 4 years ago, which was clear. They have done my neck/C spine this time as the bulk of my physical symptoms would suggest spinal issues. Best of luck x
Stepinup, hello and welcome to this awesome MSAA chat room from Fancy1959. You have just started a path that will be long and winding full of potholes and detours. That path is what we call MS and is different for each of us. At one time or another each and everyone of us have our own fears of what the future will bring and the uncertainty that MS weighs us down with.
The good news is we are all on that same path just slightly different locations for you see no two of us have the exact same route on that path. Be assured that if you stumble and fall you will be multiple hands reaching out to pull you to your feet. If need be we will continue to hold your hand and guide you through your path making sure you continue its course with the rest of us. We will not let you get lost upon it.
Now for your first neurologist appointment be as organized as possible. Write down everything that each and everyone on this chat room has shared with you. Make a separate log of your symptoms that you have already endured, when it happened, and how long it lasted. Write down every question you have and leave room for comments and answers he / she might make.
On to your neurologist. Make sure that the neurologist text time on your first appointment. if your neurologist is in a rush and doesn't answer questions or seems to blow off your needs it's probably time to find a different neurologist. They also need to make sure they answer you in a way that you understand and then they don't leave until you understand what they are talking about. Also make sure they don't drag their feet on definitive testing that you need to finish your diagnosis.
I know we've thrown a lot at you know very short time. Please keep us informed about your appointment, how it goes, and if you like your neurologist or not. We can't help you if you don't talk to us. We're here for you with unlimited resources from many many people with vast hands on knowledge whenever you need us. Remember we are just a post away. Now you are officially a part of our extended family and we take care of our family so please please keep us in the loop. I would like you to take one thing away from our first conversation and that is together we are stronger!
Thank God you are getting the needed testing! The not knowing can be worse than the knowledge that you have this thing. It must have felt terrible having such awful symptoms and it being suggested that the symptoms were not real.
Though I hope and pray you do not have MS, I do hope for clarity and the right path of treatment. You've also found a marvelous support group here who will always take you seriously. (We do laugh a bit with one another, however!)
Hi! I think it's great that you're keeping such good track of what's going on with your body. Your neurologist will greatly appreciate that. I remember my family physician also doing a balance test for me, and then recommending me to get an MRI. Sure enough I ended up being diagnosed, MS. The one neurologist also did a lubar puncture on me that confirmed MS due to the protein that was found in my spinal tap, or lumbar puncture.
Positive Romberg sign. Had this first time round. After 2nd attack I couldn't balance with eyes open. I wobble madly then fall to the right. Be aware that anything with eyes closed or that obscures your vision may worsen your balance - taking a shower, blinding sun, darkness ( I carry a torch at night ), wind blowing hair in your eyes etc. If you have good core/leg power you will find it easier to physically compensate for overbalancing. You may find you naturally walk with your legs wider apart, to aid stability.
When I had my first lumbar puncture, everything was fine. They kept me lying down for an hour afterwards. Then I had a second one years later after my D.C., can't remember why, and they had me get right up afterwards. Not good. I ended up going to the e.r. For some kind of patch, sorry I can't remember the name of it, but I do remember the killer headache caused by getting up too soon. The lumbar puncture itself did not hurt me at all, if that is a comfort. Just be sure to insist on staying down for awhile! Good luck we are so glad you are here. Love, Kelly xx
My Neurologist did the reflex test on my knee and I nearly jumped out of skin. Needless to say, today my quadricep is so stiff now. Happens to me every time I get it. Lol...I would rather get poked with a needle.
The electrical sensation is likely "Lhermittes sign" or phenomena. I had that for years early on in My journey when I had developed some cervical lesions.
Lumbar puncture didn't hurt. It did give Me cold sweats during the procedure. I didn't have any sedation for it 10 years ago. Perhaps they do nowadays. Only thing I recall was a notes le headache afterwards for a few hours.
Feeling like a lab rat with all these pills and tests! Doctor gave me orders for lab work to rule out any diseases and he wants to rule out possible silent migraine with Cambia and OTC supplements. Since my eye pain is horrific (I'm all for it!) but how can migraines cause overactive reflexes? I guess it could be all connected.
Does anyone here have episodes, that experience a slight metallic taste in your mouth?
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