New member with questions

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New member with questions

Postby crazycatlady » Tue Dec 04, 2018 6:57 am

Hi, I’ve just joined due to my daughter’s recent MS diagnosis. She mainly experiences eye issues at this time and has had different eye symptoms (double vision, feels like she’s seeing things through a kaleidoscope, etc.)off and on for years. After seeing 3 ophthalmologists and 2 neurologists she finally has a diagnosis that is not pertaining to anxiety.

I am not diagnosed with MS but would like to know other member’s experiences. (I have read some of the stories on the forum.) I first experienced a flash of light in the peripheral vision of my right eye 6 years ago. At first I thought a piece of paper fell on the ground. After the flashes of light increased significantly I made an appointment with a retinal specialist. She could not find a reason for my symptom. I then woke up a couple weeks later with photophobia, and a red, sore eye. I don’t recall her exact diagnosis other than uveitis, with a mention of optic nerve inflammation and cupping of optic disc after Fluorescein angiogram. Many blood tests were done and all came back normal.

In the next few months I felt weakness in both legs with muscle twitches and parasthesia on face, arms and legs and visited my pcp with my story. He sent me to a neurologist and mri of brain followed with no lesions found. Again, since no cause found, “there’s nothing we can do”.

I’ve been to 3 ophthalmologists, 1 neurologist and a rheumatologist...nothing abnormal found. So, I figure I’m a hypochondriac and keep my mouth shut... must be from anxiety and that is what I told my daughter about her symptoms when nothing was found. Yes, I feel guilty.

My daughter’s diagnosis came a few weeks ago and I’ve gone with her for her lumbar puncture and neurologist follow up. She lives 1000 miles away so I can’t be there all the time. I flew back home the week of Thanksgiving and woke up feeling ill. My legs felt weak, my muscles twitched, mainly in the legs and I was extremely tired, much more than the usual. I’d been having sharp, intermittent pains for a long time (only one a day or so) but when I asked my husband if he gets them, he said no. I also noticed before this, my “flash” was back in my peripheral vision. Since then I’ve had some very painful “stabs” of pain in many different locations (up to 40 a day). I have had tingling in left hand and then left foot. A particularly painful stab in my left hip yesterday left me with what felt like partial numbness of left thigh. EVERYTHING intermittently, thankfully.

I’m sorry to go on and on...just wondering if others with MS have symptoms like these??
crazycatlady
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Re: New member with questions

Postby ElliotB » Tue Dec 04, 2018 8:27 am

Welcome to TIMS, sorry to hear you and your daughter are ill.

It would probably be in your best interest to see a neurologist that specializes in MS at this time.

Have you had MRIs done of your brain and spine?
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Re: New member with questions

Postby jimmylegs » Wed Dec 05, 2018 2:52 am

hi and welcome. re vision issues, these earlier posts may be relevant

summary exercise-and-physical-therapy-f21/topic30415.html#p254982
the original 'real time' version (starts getting into it properly on mar 19) daily-life-f35/topic30021.html

have any of the tests run to date investigated nutritional status? if so, do you have those results available to share?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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jimmylegs
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Re: New member with questions

Postby crazycatlady » Wed Dec 05, 2018 3:55 am

ElliotB,

Thank you. Yes, I had an MRI of my brain 5 years ago and no lesions were found.

I have found an MS Neuro in my area and will give them a call.
crazycatlady
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Re: New member with questions

Postby crazycatlady » Wed Dec 05, 2018 4:03 am

Jimmylegs,

Thank you for the information. I will read it more thoroughly today.

I don't have the results but I remember my Vit D was low and zinc?, I think. I've had several prescriptions of the 50,000 units of vit D. I now take Caltrate and a multivitamin.
crazycatlady
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Re: New member with questions

Postby ElliotB » Wed Dec 05, 2018 4:21 am

Keep in mind that there are potentially hundreds of illnesses that mimic the symptoms of MS.

Regardless of whether you have MS or something else, it is probably in your best interest to begin a proactive approach to your situation with regard to diet (many to choose from, one way or another minimize 'bad' fats), exercise (regular exercise of any kind is extremely important), supplements (very important to insure proper nutrition as modern foods have reduced nutrition) and eliminate all stress from your life.

Hope you are feeling better soon.
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Re: New member with questions

Postby jimmylegs » Wed Dec 05, 2018 5:23 am

hi again :)
tracking down your own copy of past lab work is an important piece of the puzzle. the exact result whether inside or outside the normal range is excellent info to have on hand. with it, you can figure out if your profile matches an ms profile and if so, work to make sure that is no longer the case.
low to mid range d3 is certainly part of that profile. while results info is pending, can you be more specific re your d3 prescription details, including time frames and cofactors if any?
can you link us up here to label details for your caltrate and multi products? details matter :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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jimmylegs
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Posts: 11781
Joined: Sat Mar 11, 2006 3:00 pm


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