Haven't been on here in a while because I have been feeling pretty good since on Gabapantin! Yea!
However, yesterday I had to go to the grocery store. The weather was perfect but very humid and hot. It wasn't so bad in the morning and my husband brought the kids to school because I felt as though my body was working against me. My daughter is very intuned to my symptoms more then I am....lol. Stumbling to the kitchen, my daughter said, Daddy...Mommy is doing that walking thing again.
Needless to say my body did not like the heat and I almost fell in the parking lot. I felt people staring. My daughter was with me (age 5) and she said, Mommy grab a cart you can use that. I love my daughter!
Tingles just creeps up my leg and then goes numb with stiffness making it hard to bend my knee.
Happened 3 times that day...all while outside. It takes me 45 mins to regain movement.
Since my last appointment with PCP (referral to a shrink) my husband has been making small negative comments on my inability to move and symptoms. Now I feel I have to "bend the truth" or lie to him about how I feel and disregard everything my body is going through.
If this is all in my head...then Gabapantin wouldn't be working for me.
It helps my symptoms and pain. This is not in my head and I hope some of you have gone through something like this.
How have you been treated up until your diagnosis?
Thanks for reading😊
Stephanie
Written by
Stepinup
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I'm so sorry that you are hearing negative comments. I will keep you in my prayers to be surrounded with positivity and strength both physically and emotionally. I'm glad that you have such a good helper in your 5 year old.
I was diagnosed with MS on the 8th of this month. For years prior to my diagnosis, I thought I had it but was too scared to see a doctor about it. My mom had MS and passed away in March of 2010. Watching her as she progressed scared me so I didn't want the same path for myself.
I was started on a steroid infusion on the 17th for 3 days. I was having tingling and numbness in my fingertips along with an electrical charge that filled my head and shot down my arms to my fingertips. The electrical charge had stopped and the feeling returned to my right hand but as of yesterday, all of my symptoms have returned. Prior to my diagnosis, I would just deal with the tingling and numbness. I finally went to see a doctor when my symptoms went to my head.
It's good to see a new face! I'm glad you found us!
I have no diagnosis yet and I'm in limbo with my Neuro. 3 lesions were found (2 in my inner ear and 1 on my frontal cortex) which explains my vertigo...lol. But does not explain my other persisting off and on again symptoms. It is frustrating having to use a cane to walk...but it helps me.
Oh, no diagnosis yet, ok. I have 2 lesions, 1 on my brain which is causing the tingling and numbness in my fingertips. The other is on my spine which is causing the electrical charge when I tilt my head forward.
As a health care provider i know if we can't find an answer we often say it's psychological. While the mind and body are closely entwined, I've always tried to remember that attributing something to "all in the head" really shouldn't be considered until a thorough enough search for other causes has been done.
Sounds like your husband is frustrated...sorry he's buying into the PCPs comment.
Do not listen to others, if you having symptoms let your doctor know.
Maybe your husband should go with you to your next appointment so he can hear the doctor/someone else tell him that your symptoms are real and typical of those with MS. Maybe he is just afraid for you and your family and it is coming out as anger/irritation. That happens with lots of people, especially men. My husband acted that way for a while. The very active, physical person he married and loved wasn't able to do things like she had before. We talked about it and he finally accepted it. Now he is my advocate and best friend.
I was very active before this started, going to concerts and working out. Now the stress comes down on me when I have to stay home...my husband finds friends to go with him now.
But we are going to a concert in June...should be wild...so my husband bought tickets in the handicapped section! I thought that was nice.
Don't lie about how you feel. I have been guilty of that and it always comes back to haunt me. They always want to say it's in your head when they don't know what to do, but seeing a therapist is very helpful. I saw one shortly before my diagnosis and it helped me through that period until I could get the proper treatment.
I hope this helps and when your husband makes those comments, let him know what he's doing and how it effects you
I'm so sorry that you symptoms are acting up again Stepinup and that it's taking so long for you to get a DX. Did you ever call MSAA to find another Neurologists?
I'm also sorry that your husband has been making little dogs at you. My guy used to do that also. Til l got in his face and literally stood right in front of him and said, See this? (Referring to my body) It's Not Mine Anymore!!! I just live in it!!! I think that was his wakeup call💕
Keeping the communication open isn't easy, but we all have to try! And men are notorious "fixer's" see a problem, fix it. Unfortunately this can't be fixed, but see if there are ways he can help you more. IE. Shower bar installed, handrail somewhere something physical that he can do to help you.☺
Hang in there Stephanie
Jes🌠
I have been in this game for over 40 years and I cannot stress enough that HEAT is your enemy. I recommend always keeping an ice bottle of water (freeze them to go) with you and wearing a hat (when the head gets hot or even warm, it can/will cause MS to activate). I know you probably do NOT want to wear a hat (I have some good ones), but you will be surprised at how much it can help. Just a suggestion to you newbies. xoxo Linda
I love wearing hats when my vertigo acts up. But I'm finding it difficult to wear hats in the warm weather because it heats up my head...lol....there is no winning this battle.
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Undiagnosed symptoms
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