So stressed being in limbo...

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

So stressed being in limbo...

Postby Harrietisobel » Sat Jul 12, 2014 6:40 am

Hi guys,
About a month and a half ago I ended up in hospital after experiencing a week long migraine, nausea and vomiting, neck pain/stiff neck, and numbness and tingling that would start in my foot and travel up through my body (on one side only, but could occur on either side). I was in hospital for 8 days being tested by neurologists to rule out anything serious. Their end conclusion was viral meningitus or symptoms associated with migraines... During my stay I had an MRI done (brain and spine) which came back normal... 2 lumbar punches (no sign of ms there) and 2 CT scans (normal)... they were looking for ms because my mum has lesions that may or may not be inactive ms lesions (depending on the doctor). So here i am a month and a half later still experiencing numbness, tingling and prickling in my hands an feet and sometimes random numb patches around my body. I went back to my GP who tested me for thyroid issues, diabetes and b12 deficiency (only a blood test though)... All normal. He said i may still have very early MS and to come back in a month to be referred to a neuro (again) if symptoms continue... I am so confused, it's so frustrating that doctors are so inconsistant... Indon't really know what my question is but really needed to let that out to people who might understand. My symptoms don't interfere with my life greatly but they are interfering with my sanity :-/ thanks for reading. Any insight about how to proceed or what to think would be great...
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Re: So stressed being in limbo...

Postby lyndacarol » Sat Jul 12, 2014 8:05 am

Harrietisobel wrote:Hi guys,
About a month and a half ago I ended up in hospital after experiencing a week long migraine, nausea and vomiting, neck pain/stiff neck, and numbness and tingling that would start in my foot and travel up through my body (on one side only, but could occur on either side). I was in hospital for 8 days being tested by neurologists to rule out anything serious. Their end conclusion was viral meningitus or symptoms associated with migraines... During my stay I had an MRI done (brain and spine) which came back normal... 2 lumbar punches (no sign of ms there) and 2 CT scans (normal)... they were looking for ms because my mum has lesions that may or may not be inactive ms lesions (depending on the doctor). So here i am a month and a half later still experiencing numbness, tingling and prickling in my hands an feet and sometimes random numb patches around my body. I went back to my GP who tested me for thyroid issues, diabetes and b12 deficiency (only a blood test though)... All normal. He said i may still have very early MS and to come back in a month to be referred to a neuro (again) if symptoms continue... I am so confused, it's so frustrating that doctors are so inconsistant... Indon't really know what my question is but really needed to let that out to people who might understand. My symptoms don't interfere with my life greatly but they are interfering with my sanity :-/ thanks for reading. Any insight about how to proceed or what to think would be great...

Welcome to ThisIsMS, Harrietisobel. I am responding to your last sentence with my thoughts.

You wrote that your GP ruled out a vitamin B12 deficient with a blood test. I hope you have the actual test number result: according to the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally Pacholok, RN, BSN, and Jeffrey Stuart, D.O., a result above 550 pg/mL is desirable; the authors recommend achieving a level of 1000 pg/mL for a patient who has neurological symptoms.

If your result is in the 200-550 pg/mL range (considered the "gray zone" by the authors), perhaps your physician should confirm that there is absolutely no possibility of a deficiency by ordering these two additional tests: a serum homocysteine test and a serum or urinary methylmalonic acid test (Elevated results on these tests indicate a B12 deficiency.).

All your symptoms could be attributed to several different conditions, which include a B12 deficiency. In fact, numbness/tingling/prickling in the hands and feet is the most common symptom of B12 deficiency. Even lesions are a symptom of B12 deficiency – has your mum ever been tested for it? A deficiency can develop in any person at any time. It seems logical to me that there could be a hereditary component.
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Re: So stressed being in limbo...

Postby ElliotB » Sat Jul 12, 2014 3:27 pm

At this time, perhaps it may be a good idea to proceed with your life as if you have MS. There is a lot you can do to help yourself fell better with regard to nutrition, supplements, exercise and lifestyle changes. Whether you have MS or not, or something else, changes in these areas can only help you.
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Re: So stressed being in limbo...

Postby Harrietisobel » Sat Jul 12, 2014 4:11 pm

Thank you for your replys guys, after reading all the posts here I feel like an idiot for not asking for a copy of my test results. I have no idea what number my vitamin b12 is at. My mum would never listen to me if I told her to get her vitamin b12 tested, she doesn't really have any symptoms so she just prefers not to talk about it. When you say proceed like you have MS Iam assuming you mean diet and exercise, what other things can I do to help myself? Should I try eating more vitamin b12 foods or should I go back to my doctor and demand extra tests... Sorry for all the questions. I am at my wits end. Can anyone tell me how likely it is to have a clean spinal and mri and still have MS... Is 5% right? Thank you :)
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Re: So stressed being in limbo...

Postby lyndacarol » Sat Jul 12, 2014 6:11 pm

Harrietisobel wrote:Thank you for your replys guys, after reading all the posts here I feel like an idiot for not asking for a copy of my test results. I have no idea what number my vitamin b12 is at. My mum would never listen to me if I told her to get her vitamin b12 tested, she doesn't really have any symptoms so she just prefers not to talk about it. When you say proceed like you have MS Iam assuming you mean diet and exercise, what other things can I do to help myself? Should I try eating more vitamin b12 foods or should I go back to my doctor and demand extra tests... Sorry for all the questions. I am at my wits end. Can anyone tell me how likely it is to have a clean spinal and mri and still have MS... Is 5% right? Thank you :)

When most of us began our medical "journeys," we were not in the habit of collecting our test results. At some point, the advice to ask for our results was suggested, and some of us do so routinely now. Is it possible to call your doctor's office and request a copy?

I understand the situation with your mum; there is nothing to be gained by pushing her to be tested now, but if any symptoms appear in the future, it might be important to consider then. A B12 deficiency can develop in any person at any time, but the risk is higher in people over age 60.

As for eating more vitamin B12 foods… these foods are animal-sourced (meat, poultry, fish, dairy, eggs) and, unless you are vegetarian, I would guess that you probably eat an adequate amount. The pathway for B12 metabolism is the most complex of any vitamin. There are several enzymes and substances made in the body that are necessary to handle and absorb vitamin B12; if the body fails to make any one of these along the way, the B12 will not complete its trip from food source to the cells in the body.

I do not encourage you to demand extra tests, but I hope you can discuss the possibility with your doctor. By the way, do not take any vitamin B supplements if your doctor will order testing – supplements before the test will skew results. If you are found to have a B12 deficiency, it is easily and inexpensively treated.

Also, in the discussion with your doctor, you might mention that the University of Chicago suggests that the investigation into the cause of peripheral neuropathy (the "official" name for your numbness/tingling in the extremities) include the following:

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

Please note that the first blood test the U of Chicago suggests is for vitamin B12. I definitely think this is the place to start. There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.

As for how likely it is to have normal test results (MRI, EMG, etc.) and still have MS… this is my personal experience: my test results were normal; in fact, I had THREE normal MRIs – it was my FOURTH that first showed any lesions. I have heard of many others with a similar story. I cannot give you a percentage for this, but it is not uncommon.

Do not apologize for asking questions. We are here to share our opinions and answer questions – like most of us here, I have no medical background. We are all searching for answers.
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Re: So stressed being in limbo...

Postby ElliotB » Sun Jul 13, 2014 3:57 am

what other things can I do to help myself?"


As far as diet goes, consider the Paleo and/or Swank diets. Also consider Dr. Terry Wahls' protocol. When consuming meat, I strongly recommend consuming only 100% grass fed meats. When eating fish, consume only wild caught fish, not farm raised. Eliminate gluten, wheat and dairy from your diet.

For exercise, do what you can without getting overheated. Swimming is excellent if you have access to a pool because you can exercise vigorously and stay cool at the same time. I wear a cooling vest when outdoors in the heat.

Remove all stresses from you life. Stress is not good for anyone, especially someone with MS or any kind of serious illness.

There are many, many supplements you can take. At a minimum, I recommend a good multi, D3 (higher doses than the RDA), Omega 3, CoQ10, and B-12. I take a lot more than this but this would be a good start. If you are going to take higher doses than the RDA, you should consult with your doctor.
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