Need advice from patients!

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

Need advice from patients!

Postby emi » Sun Jun 16, 2013 3:49 pm

Hi all! I am writing you today in hopes that some one will give me their opinion based on experience. Okay here it goes, first I've had this headache for what seems like decades (actually about 2 months),there is a numb patch on my back that feels like bugs under my skin (the skin is sencitive in the crawling part but numb elsewhere around it), I am tired all the time any more, have problems concentration and I forget what I'm doing while I'm doing it!! I can't remember yesterday! Small muscle twitching in arms and legs (like its being irratated). my neck and back ache like their tired and I've been feeling random stabbing pain random places on my body. My eyes ache when looking anywhere but straight and I am experiencing chills on the back of my head?! The most bothersome symptom is when I stand up I black out (luckily I've learned to catch myself). When this happens I am disorented and cannot see or think for a few seconds. I had a ct done and it shows a "hyperdence focus" in the basal ganglia region of my brain, not sure what that means but its not normal. If any one has some insight, it would be greatly appreciated, thank you!
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Re: Need advice from patients!

Postby bartman » Sun Jun 16, 2013 4:15 pm

has it ever occurred that the bugs you feel crawling inside your body are, in fact bugs? If I were you I would educate yourself on lyme, bartonella and Babesia, 3 infections often misdiagnosed as MS. Also learn about CPN on this website on the antibiotic section. I would do the wheldon antibiotic protocol for atleast 1 year, regardless of any blood test. you said it yourself feels like bugs crawling inside me. You are probably correct. Educate yourself on the infections above. You do not want to treat with MS meds if you have infection as they will make you worse, same goes with steroids. Also learn about a herxheimer reaction as you likely will feel worse before you get better.

This is just my opinion based on watching a cousin misdiagnosed with MS in 1996 and positive with all the infections above in 2008. Antibiotics have given him his life back but it wasn't easy and took awhile. Have you ever seen the movie Under Our Skin? (google it-check it out on hulu for free)
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Re: Need advice from patients!

Postby jimmylegs » Mon Jun 17, 2013 3:22 am

this review article might be useful reading:
Magnetic resonance imaging findings in bilateral basal ganglia lesions ... 491389.pdf

also interesting, just searching on "hyperintensity mri basal ganglia"

T1-weighted hyperintensity in basal ganglia at brain magnetic resonance imaging: are different pathologies sharing a common mechanism?

Basal ganglia hyperintensity on T1-weighted MRI in Rendu-Osler-Weber disease.

Radiological Reasoning: Hyperintensity of the Basal Ganglia and Cortex on FLAIR and Diffusion-Weighted Imaging
"Abnormalities on imaging of the basal ganglia are often nonspecific. Therefore, a focused approach to limit the differential diagnosis is based on whether the patient presents with acute or chronic symptoms. The most sensitive sequence in the acute setting to detect abnormalities within the basal ganglia is diffusion-weighted imaging (DWI). The differential diagnostic considerations in the acute setting should include hypoglycemia, cerebral hypoxic encephalopathy, carbon monoxide poisoning, encephalitis, osmotic myelinolysis, toxin exposure, vascular causes, and illicit drug use."
odd sx? no dx? check w/ dietitian
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Need advice from patients!

Postby CaliReader » Mon Jun 17, 2013 12:44 pm

You didn't say what you've done to investigate these symptoms, or which doctors, tests you've tried.

If you want to find out if you have MS, you need to talk with a neurologist.

Good luck.
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Re: Need advice from patients!

Postby emi » Thu Jun 20, 2013 1:03 pm

Update: finally received a referral to a neurologist! It proved difficult as I have Medicaid and my doctors office only wants to treat the symptoms instead of looking for the problem, thanks for all the input!
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Re: Need advice from patients!

Postby essence » Thu Jun 20, 2013 7:32 pm

just keep pushing for answers emi, and stay positive and exude positiveness, I find its been getting me further, i was getting really frustrated before and that gets you no where, and don't let any one step in your way or discourage you, it takes time getting answers, and make sure you really push for the neurologist to do as much as they can try not let anyone push you away.. It's hard, not sure how old you are but regardless its real hard, im trying to get answers too, good luck!
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