you know when suddenly it all become clear?

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you know when suddenly it all become clear?

Postby missmissmissmiss » Wed Mar 05, 2014 9:15 am

Hello folks, I thought I would introduce myself here as I am undiagnosed. But I know. I do.

The first thing, looking back, was episcleritis about 20 years ago. The eye dr told me to speak with my GP, as this was often a symptom of auto immune disease. Nothing came of that.

The next thing was horrendous injuries, frozen shoulder, tennis elbow, carpal tunnels, piriformis pulled, coccyx pain. I felt that a right hypochondriac, always moaning about some pain or other. Eventually I was sent to the hospital and given a diagnosis of hypermobility. I accepted that, it seemed to fit.

More recently I've noticed that when I get fluey type symptoms, fatigue, achey joints, feeling unwell, I get tingles and twitches - started in my legs, but now are all over, rapid fire shot, never the same place. I told the GP, whilst he looked interested, he didn't do anything other than bloods, which came back low vitamin D, high white blood cells. He was more interested in whining about my weight, and blood pressure. I know both are a problem, but I am dealing with them. When I get an attack, I tend to drink wine to comatose me - stupid, I know.

In the last few months I've had a kind of wet feeling on my right thigh, worse when I am standing for long periods.

I went back to the GP last week to make the neurological link - I had thought everyone had tingly and twitchy muscles when they were poorly, I really did. The GP sent me off for more bloods a couple of days ago. Last week I was off work Weds, Thurs, Fri, went back in on Monday, Monday night got a hammering headache every time I moved my eyes. Tuesday I got up and went to work, head hurt all day. This morning I've given up again, I can't work. I am a teacher, in a very challenging school.

I read about misaligned atlas bone, and thought may'be this is what the problem is (also thinking sunshine, vitamins etc in desperation to take some control over my body with knowledge) I went to see a chiropractor today to see if she could realign, and my blinding headache would go. No such luck. In fact she seemed pretty on the ball, saying I needed to get the GP to refer me to a neurologist, as no trapped neck nerves would cause leg twitching. Nevertheless, mindful of the £50 she could rinse me for, she duly told me my neck was stiff, and cricked it several times to loosen the bones. Of course, it is soooo bad, that I have to go back tomorrow. I don't think I'll bother.

I'm worried. I feel pretty certain that I have MS. Everything that I've read, I just find myself saying 'yes' 'yes', even down to the tight feeling under ribs. I see my GP again on the 15th, and will ask for the neurology appointment. I am scared that the quality of my life will go rapidly downhill, starting with my job being out the window. My job and my grandchildren are all there is.

Thank you if you got this far, it's helped me to write it all down in the order it happened!
missmissmissmiss
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Re: you know when suddenly it all become clear?

Postby lyndacarol » Wed Mar 05, 2014 4:46 pm

missmissmissmiss wrote:Hello folks, I thought I would introduce myself here as I am undiagnosed. But I know. I do.

The first thing, looking back, was episcleritis about 20 years ago. The eye dr told me to speak with my GP, as this was often a symptom of auto immune disease. Nothing came of that.

The next thing was horrendous injuries, frozen shoulder, tennis elbow, carpal tunnels, piriformis pulled, coccyx pain. I felt that a right hypochondriac, always moaning about some pain or other. Eventually I was sent to the hospital and given a diagnosis of hypermobility. I accepted that, it seemed to fit.

More recently I've noticed that when I get fluey type symptoms, fatigue, achey joints, feeling unwell, I get tingles and twitches - started in my legs, but now are all over, rapid fire shot, never the same place. I told the GP, whilst he looked interested, he didn't do anything other than bloods, which came back low vitamin D, high white blood cells. He was more interested in whining about my weight, and blood pressure. I know both are a problem, but I am dealing with them. When I get an attack, I tend to drink wine to comatose me - stupid, I know.

In the last few months I've had a kind of wet feeling on my right thigh, worse when I am standing for long periods.

I went back to the GP last week to make the neurological link - I had thought everyone had tingly and twitchy muscles when they were poorly, I really did. The GP sent me off for more bloods a couple of days ago. Last week I was off work Weds, Thurs, Fri, went back in on Monday, Monday night got a hammering headache every time I moved my eyes. Tuesday I got up and went to work, head hurt all day. This morning I've given up again, I can't work. I am a teacher, in a very challenging school.

I read about misaligned atlas bone, and thought may'be this is what the problem is (also thinking sunshine, vitamins etc in desperation to take some control over my body with knowledge) I went to see a chiropractor today to see if she could realign, and my blinding headache would go. No such luck. In fact she seemed pretty on the ball, saying I needed to get the GP to refer me to a neurologist, as no trapped neck nerves would cause leg twitching. Nevertheless, mindful of the £50 she could rinse me for, she duly told me my neck was stiff, and cricked it several times to loosen the bones. Of course, it is soooo bad, that I have to go back tomorrow. I don't think I'll bother.

I'm worried. I feel pretty certain that I have MS. Everything that I've read, I just find myself saying 'yes' 'yes', even down to the tight feeling under ribs. I see my GP again on the 15th, and will ask for the neurology appointment. I am scared that the quality of my life will go rapidly downhill, starting with my job being out the window. My job and my grandchildren are all there is.

Thank you if you got this far, it's helped me to write it all down in the order it happened!

Welcome to ThisIsMS, missmissmissmiss.

First, you may not have MS at all, but there is always the possibility; it is an exclusionary diagnosis made by ruling out other possibilities. If eventually you are diagnosed with MS, you have found a group of new supportive friends at this site. Each of us has had unique experiences and has unique ideas about this disease. Mine revolve around excess insulin. Although you have not asked for suggestions, I hope that you will accept mine as a friend who would like to help.

If you have a good rapport with your GP, I urge you to work with him, schedule blood tests listed below that have not already been done, and rule out some possibilities. I believe that if you see a surgeon about a problem, he will find a solution only in surgery; if you see a neuro, he will only see the problem/solution in neurology. I have read: "doctors are experts in, and only test for, those parts of the body in which they specialize."

The tingling which started in your legs is called "peripheral neuropathy" (Numbness and pain in the extremities is also part of the definition.). The University of Chicago suggests the following investigation of peripheral neuropathy:

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

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


Many of your symptoms echo those listed by Dr. Myers. I suggest you and your doctor investigate the possibility of wheat/gluten sensitivity.

On 12/2/2013 Dr. Amy Myers, M.D. spoke about gluten sensitivity:
http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog, depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes. (In another interview with Dr. Myers, she included weight gain; irregular bowels; a skin condition called keratosis pilaris; food sensitivities to dairy, corn, and soy.)

@4:30 she says more than 18 million have been diagnosed with gluten sensitivity; suspects that 1 in 2 probably has gluten sensitivity

@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases

Recent study showed that 56% of people with migraines had gluten sensitivity; gluten-free diet resolved the migraine problem.

I believe insulin (the "fat storage hormone") is a major player in MS. From this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS) - a diet that will not trigger insulin production. I urge you to request a "fasting blood insulin test" from your doctor. (The optimal test result would be 3 UU/ML or lower.)

All the best to you.
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: you know when suddenly it all become clear?

Postby missmissmissmiss » Thu Mar 06, 2014 11:17 am

Thank you so much for your response. I shall read up on all of those things. I've already had bloods done. I've pretty much followed a low carb diet for years so I doubt gluten. I will keep you posted. I might add that I have EDS and the occurrence of MS in EDSers puts the chances from 1:1000 to 1:100, hence my self diagnosis!
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Re: you know when suddenly it all become clear?

Postby jimmylegs » Thu Mar 06, 2014 1:35 pm

hi miss and welcome
do you have a copy of your bloodwork results? often there are gaps re tests that should be ordered, and in interpretation of the tests that do get ordered..
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