Multiple Sclerosis (MS) Support Group
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I have been in limbo for exactly one year now with no concrete answers. I still feel awful and it is frustrating for me not having answers.
I am a 36 year old married mother of 2 small children.
My initial symptoms were a loss of strength (dead nerve feeling) in both arms, then a couple days later, a loss of dexterity in my right hand which lasted a few hours. A week After that, numbness (pins/needles) on my entire right side which lasted days. I have had extreme fatigue, numbness on my right side of face, earlobe and drooping right eye (ptosis), burning leg pain, paraesthesias. I have had dizziness almost continuously. I have had tremors in hands and since the hand dexterity issue, I constantly drop things ALL the time and my hands are much slower than they used to be (tying things, fine motor skills, etc).
Saw GP first, then neuro, then neurosurgeon (for a syrinx unrelated to symptoms). Neurosurgeon referred me to MS specialist.
I have had most everything ruled out; myasthenia gravis, lyme, lupus, etc. My GP did diagnose me with Fibromyalgia during this whole ordeal. He also thought most of my symptoms were anxiety (NOT). I had anxiety from the potential diagnosis--never prior to this!!
Anyways, MS doc sent me for second MRI which remained unchanged from my first, 5 months earlier (only one pontine lesion and thinning of corpus callosum). So she sent me on my way and I see her for the third time next month. She was straying away from MS as being the focus because my symptoms don't last long and there were no new lesions.
I am at a loss now. I see her again next month but prior to that I need a MRA done to check my brain's blood vessels so she can rule something else out (CNS vasculitis or stroke?) Meanwhile, I am dizzy almost all the time and have lately had a lot of numbness on my right earlobe and side of my face. I am always tired no matter how much I sleep and always feel like a nap.
Maybe it IS all fibromyalgia but I am so frustrated at this point and don't know what else to do! Thank you for reading this :)
I am a 36 year old married mother of 2 small children.
My initial symptoms were a loss of strength (dead nerve feeling) in both arms, then a couple days later, a loss of dexterity in my right hand which lasted a few hours. A week After that, numbness (pins/needles) on my entire right side which lasted days. I have had extreme fatigue, numbness on my right side of face, earlobe and drooping right eye (ptosis), burning leg pain, paraesthesias. I have had dizziness almost continuously. I have had tremors in hands and since the hand dexterity issue, I constantly drop things ALL the time and my hands are much slower than they used to be (tying things, fine motor skills, etc).
Saw GP first, then neuro, then neurosurgeon (for a syrinx unrelated to symptoms). Neurosurgeon referred me to MS specialist.
I have had most everything ruled out; myasthenia gravis, lyme, lupus, etc. My GP did diagnose me with Fibromyalgia during this whole ordeal. He also thought most of my symptoms were anxiety (NOT). I had anxiety from the potential diagnosis--never prior to this!!
Anyways, MS doc sent me for second MRI which remained unchanged from my first, 5 months earlier (only one pontine lesion and thinning of corpus callosum). So she sent me on my way and I see her for the third time next month. She was straying away from MS as being the focus because my symptoms don't last long and there were no new lesions.
I am at a loss now. I see her again next month but prior to that I need a MRA done to check my brain's blood vessels so she can rule something else out (CNS vasculitis or stroke?) Meanwhile, I am dizzy almost all the time and have lately had a lot of numbness on my right earlobe and side of my face. I am always tired no matter how much I sleep and always feel like a nap.
Maybe it IS all fibromyalgia but I am so frustrated at this point and don't know what else to do! Thank you for reading this :)
That is what diagnosed me, many years ago.
I have fatigue, pins & needles, dizziness as well as balance problems.
I hope that you get the answers you are looking for.
I hope you get answers soon.
Once I read the book on MS, I really identified with it. I pretty much knew I had it before I saw the neuro doc but the MRIs confirmed the dx.
But if you don't have bowel or bladder issues, it may be something else. Almost everyone with MS have bladder problems or have constipation (I have had this for decades).
Good luck with finding some answers. Don't give up.
MS -Multiple Sclerosis is in Latin in eng it means MANY scars
I found out in my med history when I saw neuro I had one lesion so they said they would watch but I saw upset & stop seeing them
according to the criteria that they have to go by
you have to have two separate attacks & that means 2 lesions
the MS specialist is keeping you on & doing more MRI's so she most likely suspects you are in the early stages of MS or she would tell you to take a hike.
I learned this from my MS specialist
sorry for what is happening to you
it would help to keep a symptom journal just don't make it wordy
list the symptoms across the top
on the side write the day you felt it and rate it out of 5 or 10 what ever makes sense to you
also go to the ms society of canada web page click on living with ms then click on symptoms scroll down click on each symptom
I found it useful I had a number of symptoms I had learned to live with so no longer consider them
stay with the MS doc & be patient at least they are listening to you
sending warm thoughts your way
(((Hugs)))