could be, maybe, possibly MS but not confirmed

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

could be, maybe, possibly MS but not confirmed

Postby jo12 » Sun Dec 29, 2013 2:02 pm

So I'm very new here and very appreciative to any advise that anyone would like to share. I'm a 31 yr wf, single mother of 3 boys. I began having headaches oct 9th of this year. I continued working with this headache throughout the week. The following sunday it was more severe and the right side of my face began going numb. I was taken to er. CT performed due to HA and drooping of my lip and right eye. Preliminary report was fine. Received med for Migraines and sent home. I have no hx of migraines though I did report to md that I had noticed I had been having infrequent HAs and occasional numbness in my left arm but nothing to complain about and experienced bells palsy after delivery of my twins. The next day I was so weak I could not get out of the bed. Cannot explain the weakness and fatigue. It was like no matter how much I slept it didn't help. Received a message that "something" showed up on official CT result and needed mri. Saw my pcp the following tuesday. My right eye had nearly closed due to numbness and weakness on right side. Left leg and arm were getting numb at this point but were usable. Sounds crazy but couldnt sleep due to something shocking me in my right buttock ans the constant need to urinate. Pcp agreed that I needed mri and needed to see eye dr due to my blurred vision. Saw eye dr next day. Visual loss in right eye with some "blurring" never said neuritis. Saw neuro-ohpthamologist next day. Agreed that I need mri and this is where the I THINK you have MS came into the picture. The whole time they had me thinking I had a brain tumor, MS was not even a thought. Headache continues and weakness worsens on left side. Began forgetting things and repeating words I had already spoken. I was experiencing expressive aphasia and I was getting depressed with myself. Contacted pcp and was started on celexa 20mg daily. Mri came back fine. Suggested LP, ranges were in higher normal with 2 bands but normal. Was off work for three weeks and basically made myself go back. I tired out so easily and was very ashamed of my cognitive delays because I'm the DON of a rural home health. Things started getting some better. Vision had improved some but still blurred. Left leg was dragging during ambulation but was getting stronger. On dec 17 boom here we go again. Headache that wouldn't go away worsening of vision in right eye. Right eye closed up completely from the numbness and the left arm and lef were comoletely dead. Er md said I really believe u r having a ms flare. I was transferred to a bigger hospital with a neurologist ononcall. Received 1 gm of steroids daily x 3 days iv. Started on neurontin 300mg TID and did a lil PT but tired very easily. I was dicharged home with orders for outpatient PT and the not so friendly neurologist said he wasn't convinced thst it was MS bc the MRIs they performed were yet again normal. Went back to work using a rollater. I'm trying and fighting hard. On Christmas day I realized I had a lil numbness in my right foot and right thigh, didn't mention this to my family. The next morning it was feeling ok and I attempted driving to work. Not smart. Right foot was pretty heavy and I was delayed on hitting the brake and nearly hit a car. Pulled over and called for help. Back in hospital gave me one more dose of steroids and the same not so nice neurologist said I needed PT and to not be in hospital. So discharged home this friday. He still says he's not convinced its MS that my CNS is fine. I told him that I would never talk rudely to my patients as he did to me and I wanted to fo home. After this he recommended another LP and I refused. Probably a mistake but he thinks I'm crazy and its very apparant. Discharge papers showed ms vs conversion disorder. I see ms specialist jan 16. I'm praying really hard and trying my best to stay positive bc I have 6 little eyes looking up to me. I'm very athletic and its killing me to not be able to play outside with my sons. It takes all of my energy to make it up and dodown the steps to just watch them play outside. My left leg is very weak still and right eye blurred still (so overlook grammer and misspelling please). Please help. Sorry so long and drawn out. Oh also forgot to mention the horrible experience of something squeezing my stomach so badly I could not catch my breath. My neurologist (not the hospital neurologist) says this could be the MS hug??? There is nothing sweet like a hug about that. Thanks again for any help and sorry again for so long.
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Re: could be, maybe, possibly MS but not confirmed

Postby jimmylegs » Sun Dec 29, 2013 2:33 pm

hi and welcome :)

curious if you would be receptive to ruling out any nutritional factors, as the docs work on nailing down a dx for you.

your history of three kids + athleticism are red flagging depletion issues from my perspective.

I am about to start my second term of masters research on nutrition for chronic disease prevention. have been doing related informal lit review on my own for years.

link to older posts related to athletic nutrient depletion
undiagnosed-f54/topic23875.html

possibly of interest re childrearing and nutrition - happy ending :)
general-discussion-f1/topic19575.html
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Re: could be, maybe, possibly MS but not confirmed

Postby jo12 » Sun Dec 29, 2013 2:55 pm

Thank you so much. Going to visit your links now.
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Re: could be, maybe, possibly MS but not confirmed

Postby jimmylegs » Sun Dec 29, 2013 3:13 pm

no problem :)

this link gets more in-depth:
www.thisisms.com/ftopict-2489.html

the nutrients covered there are relevant for both ms patients, and more generally for anyone interested in preventing chronic illness associated with poor nutrient status.
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Re: could be, maybe, possibly MS but not confirmed

Postby lyndacarol » Sun Dec 29, 2013 3:49 pm

jo12 wrote:So I'm very new here and very appreciative to any advise that anyone would like to share. I'm a 31 yr wf, single mother of 3 boys. I began having headaches oct 9th of this year. I continued working with this headache throughout the week. The following sunday it was more severe and the right side of my face began going numb. I was taken to er. CT performed due to HA and drooping of my lip and right eye. Preliminary report was fine. Received med for Migraines and sent home. I have no hx of migraines though I did report to md that I had noticed I had been having infrequent HAs and occasional numbness in my left arm but nothing to complain about and experienced bells palsy after delivery of my twins. The next day I was so weak I could not get out of the bed. Cannot explain the weakness and fatigue. It was like no matter how much I slept it didn't help. Received a message that "something" showed up on official CT result and needed mri. Saw my pcp the following tuesday. My right eye had nearly closed due to numbness and weakness on right side. Left leg and arm were getting numb at this point but were usable. Sounds crazy but couldnt sleep due to something shocking me in my right buttock ans the constant need to urinate. Pcp agreed that I needed mri and needed to see eye dr due to my blurred vision. Saw eye dr next day. Visual loss in right eye with some "blurring" never said neuritis. Saw neuro-ohpthamologist next day. Agreed that I need mri and this is where the I THINK you have MS came into the picture. The whole time they had me thinking I had a brain tumor, MS was not even a thought. Headache continues and weakness worsens on left side. Began forgetting things and repeating words I had already spoken. I was experiencing expressive aphasia and I was getting depressed with myself. Contacted pcp and was started on celexa 20mg daily. Mri came back fine. Suggested LP, ranges were in higher normal with 2 bands but normal. Was off work for three weeks and basically made myself go back. I tired out so easily and was very ashamed of my cognitive delays because I'm the DON of a rural home health. Things started getting some better. Vision had improved some but still blurred. Left leg was dragging during ambulation but was getting stronger. On dec 17 boom here we go again. Headache that wouldn't go away worsening of vision in right eye. Right eye closed up completely from the numbness and the left arm and leg were completely dead. Er md said I really believe u r having a ms flare. I was transferred to a bigger hospital with a neurologist ononcall. Received 1 gm of steroids daily x 3 days iv. Started on neurontin 300mg TID and did a lil PT but tired very easily. I was dicharged home with orders for outpatient PT and the not so friendly neurologist said he wasn't convinced thst it was MS bc the MRIs they performed were yet again normal. Went back to work using a rollater. I'm trying and fighting hard. On Christmas day I realized I had a lil numbness in my right foot and right thigh, didn't mention this to my family. The next morning it was feeling ok and I attempted driving to work. Not smart. Right foot was pretty heavy and I was delayed on hitting the brake and nearly hit a car. Pulled over and called for help. Back in hospital gave me one more dose of steroids and the same not so nice neurologist said I needed PT and to not be in hospital. So discharged home this friday. He still says he's not convinced its MS that my CNS is fine. I told him that I would never talk rudely to my patients as he did to me and I wanted to fo home. After this he recommended another LP and I refused. Probably a mistake but he thinks I'm crazy and its very apparant. Discharge papers showed ms vs conversion disorder. I see ms specialist jan 16. I'm praying really hard and trying my best to stay positive bc I have 6 little eyes looking up to me. I'm very athletic and its killing me to not be able to play outside with my sons. It takes all of my energy to make it up and dodown the steps to just watch them play outside. My left leg is very weak still and right eye blurred still (so overlook grammer and misspelling please). Please help. Sorry so long and drawn out. Oh also forgot to mention the horrible experience of something squeezing my stomach so badly I could not catch my breath. My neurologist (not the hospital neurologist) says this could be the MS hug??? There is nothing sweet like a hug about that. Thanks again for any help and sorry again for so long.


Welcome to ThisIsMS, jo12.

First of all, I suggest you DUMP the "not so friendly neurologist" and NEVER see him again!

Next, work with your PCP (or a nice neuro – the one who is compassionate and willing to work with you); take the list of all your symptoms to him; and discuss the neuro exam guidelines described by the University of Chicago (your left arm numbness and leg numbness are "peripheral neuropathy"):

http://peripheralneuropathycenter.uchic ... #bloodtest

Request and keep copies of the blood test results for your own file:

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

At this time, I think the testing for wheat/gluten sensitivity/celiac disease is extremely important. A person can develop a gluten sensitivity at ANY time in her life, even if she has been able to eat gluten for many, many years. Gluten sensitivity is known to cause headaches/migraines. Also, the atypical form of celiac disease commonly presents with neurological symptoms.

As a result of wheat in the diet and gluten sensitivity, I believe that excess insulin (hyperinsulinemia) develops, leading to insulin resistance in the muscles (excess insulin is known to affect smooth muscles – the detrusor and sphincter muscles of the urinary bladder are SMOOTH muscles; this could account for your "constant need to urinate"). If the cells of your muscles are insulin resistant, glucose is not able to get to the mitochondria and be burned as energy; starved of energy, your muscles will be weak. Ask your PCP to order a "fasting blood insulin test" – this is NOT the same as a glucose test. The optimal insulin test result is 3 UU/ML or lower. (By the way, pregnant women produce excess insulin in order to put weight on the developing fetus. After delivering twins, your pancreas may have continued to overproduce – causing Bell's Palsy?) Also, corticosteroids raise blood sugar levels, which triggers increased insulin secretion – maybe not a good idea, if insulin is causing symptoms.

My first three MRIs and my EMG test results were all "normal" – this is NOT unusual for people eventually diagnosed with MS. The neurologist you saw in the hospital is not only unfeeling, but WRONG.

We wish you all the best. Please let us know how it goes.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: could be, maybe, possibly MS but not confirmed

Postby jo12 » Sun Dec 29, 2013 6:23 pm

Thank you so much for the information and compassion. My neurologist is very nice and understanding and I've already made up my mind that if I end up in the er again I will not use that hospital again. Though the hospital, nurses, cnas, and ither hospitalists were amazing I cannot handle that neurologist. My neurologist is sending me to a ms specialist who through the reviews I've read seems to be amazing. Currently, this is something new going on. Of course like I said earlier my right eye has been blurred every since the first episode in October, but now I what feels like more pressure behind my eye. Its been darker on left side of my vision through the right eye and now NEW has like an outline to the right, like double vision. I'm so grateful that I live next door to my parents who I've actually been living with since all of this has been going on. All I want to do is be the best mother I can be to my sons. Thank you for the support.
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Re: could be, maybe, possibly MS but not confirmed

Postby want2bike » Mon Dec 30, 2013 8:49 am

You might try and remember what you were doing different around the time you started seeing symptoms. Were you taking some different medication, some vaccinations, some dental work. Some toxin must have pushed you over the edge. Google detoxification and see if you can find a program which may help you. These programs involve taking vitamins and minerals which allow your body to get rid of the toxins. Your body can often heal itself if you give it what it needs. For sure you should make yourself aware of the hazards of vaccines.

http://www.youtube.com/watch?v=K1m3TjokVU4
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Re: could be, maybe, possibly MS but not confirmed

Postby jo12 » Mon Dec 30, 2013 2:47 pm

I received the flu vaccine prior to being discharged from first hospitalization. 5 days later is when the numbness began in right foot and thigh. Saw eye dr today. Vision in right eye is now 20/50 with lossed vision in left visual field of right eye. She says she cannot give me a rx for glasses bc its neurological and I should not attempt driving until after I see the ms specialist. Staying positive that things are going to turn around. Thanks for your help.
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