SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Numbness on right side + intense stomach pain
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This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

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Numbness on right side + intense stomach pain

I have been on medhelp for a few years but just discovered this site today. I'll make a list of my symptoms, maybe someone can shed some light on a possible diagnosis??

2002: i get my first stomach pain problems. Basically very intense pain in my upper abdomen, rolling on the floor in pain. With or without intense reflux that goes up to the teeth, so strong it can mimick a toothache. Happened several times between 2002 and 2006, I got an endoscopy that showed nothing at all.
Over the year, the pain will pop up here and there, I can ho months without it.
But in the last past couple of months, it has come back quite often. Generally at night, but can be anytime. Pain is in the adomen, sometimes also on the right side like under the rib cage.
I recently got a colonoscopy: all negative. Doctors have no idea what causes the pain/reflux. I take painkillers when I have these pains.

2003: out of the blues I get severe migraines with aura, lasted 10 days. Seing yellow stars in my eyes when closed, very weird! The migraines went away as suddenly as they had appeared. They reappeared here and there, with the aura a few times, but only for a day. The last one was in 2006. I has 'regular migraines' for a few months after that, here and there but have migraine free for quite a while now.
i had one MRI done at the time: it showed one lesion, the doctor said it could be from the migraines or possibly MS. As the migraines went away, I forgot all about that.

2007: I got a miscariage, d&c. A few days later I had 3 weeks of intense fatigue, never had that before or after when pregnant. I woukd sleep all day. Then it went away but about a month later I had my first 'neurological flare up'. I had numbness, tingling and a cold feeling in my right leg and right hand. For a month I could barely drive. It got better but now my right leg is always colder than my left one. If I tried to run very fast, like I have had to make quick flight connections a couple of times: my right leg becomes instantly totally numb, a dead weight and it makes it hard to run.
My right hand is generally ok, but last year I has bad sinusitis and at night my right hand would be as cold as if I had plunged it into a bucket of cold water. Once the sinusitis was cleared up, it got back to normal.
I know that the miscarriage caused all these weird neurological problems!

After the big neurological problems started, I had 2 MRI (march 2008), brain and spine: they showed nothing abnormal...

The neurologist sent me last year to see a vein doctors: no,my legs circulation is perfectly fine. She had said to come back see her if the vein test was normal but I have not gone back, fed up.

My intense and recurrent stomach pain/relux lately has me wondering if this could be what's called the MS hug??

Sorry for this long post! ... Anyone has any suggestion of what could be going on with me?

BTW I was tested years ago for Lyme disease, celiac disease: negative.
4 Comments
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803938_tn?1403751853
I forgot to mention: I am 43! and my spinal MRI was done next to a hospital in some sort of trailer on a not very powerful machine, not sure how reliable the results can be.
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1530171_tn?1362547225
Hi Ecologic.

Look into gastroparesis/vagus nerve dysfunction, probably triggered by emotional distress/trauma and exasperated by reactive foods (simple carbs and gluten are common offenders), pressure, stress.

During inactive phases difficult to diagnose,by endoscopy, in the absence of lesions.

Cheers!
Niko
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Hi, and welcome.  I have neurologic Lyme Disease, and I went through a dozen doctors and had scores of symptoms before I finally had to figure it out for myself through research.  I tend to post comments for people whose symptoms are all or nearly all on the list for Lyme Disease, but just can seem to get diagnosed with anything.

And so, I thought I would let you know that between 30-50% of actual Lyme patients test false negative on standard blood tests. Unfortunately, most doctors don't know this as they were taught to follow the tests. All of your symptoms are on the list for Lyme. It is even known to cause miscarriages. BTW, congratulations on your son! :)

Check out the symptoms list in this document, written by a pioneer in treating Lyme.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

There is also an article written by another doctor quite a few years ago titled "When to Suspect Lyme." You can google it and find it.

While Lyme is not as common in UT as in other well known areas, it is definitely there. I just read an article about an archeologist and his partner who were both infected in the UT mountains and had a very hard time getting diagnosed and treated.

Your best bet is to get tested at IGeneX, a specialty lab that does more advanced testing and finds cases other labs miss. You will also want to see an LLMD, a Lyme Literate Medical Doctor who is affiliated with ILADS. they are better at recognizing late stage Lyme. Not everyone who has Lyme symptoms has Lyme. It is called "The New Great Imitator." But since your doctors can't find any other answers, it is worth checking out.

Lyme is controversial, from prevalence to testing to disease definition and treatment. A Lyme Literate doctor is familiar with the less common presentations of the disease, like those of us who didn't get a bulls eye rash or sore knees but instead have other symptoms, such as migraines, GI problems, and neuro symptoms.  www.ILADS.org is helpful for finding LLMDS and for additional information.

This is a great, supportive forum.  You are also welcome to post your history (very thorough--nicely done) on the Lyme forum for others' thoughts.
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One more thing I forgot to mention...there is a coinfection of Lyme called Bartonella that is known to make the neuro and GI symptoms of Lyme worse. I have had a lot of both sets of symptoms. I tested positive for Bartonella at IGeneX as well as Lyme.

Given your story, you'll probably want to be tested for Bartonella as well.
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