I think I was just told I have MS?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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vender
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I think I was just told I have MS?

Post by vender »

The doctor said my brain MRI shows 6mm missing from my frontal cortex (idk) brain. He said it could be MS and not to worry about but wants a brain wave scan? And another MRI in six months. Is this how it begins? I apologize if this makes no sense but just taking it in. And I have all the symptoms of MS. Been dealing with shoulder surgerys and pain for years with no answer. My left leg was paralyzed after I had my right first rib removed. Go figure. Its back but I trip and fall and walk with a cane when its tired. It shakes like crazy when im on a ladder. I forgot how to sign my name the other day (crazy). Im still wrestling with that one. My vision is for crap and now I just got bifocals. I feel blind at night. Im a contractor and sometime I cant lift a hammer. Sorry for going on. Thanks for your help.
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Scott1
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Re: I think I was just told I have MS?

Post by Scott1 »

Hi,

I don't know if you have MS or not but what a burden you are carrying. Why you need repeated shoulder surgery and to have a rib removed may be more important. What was the reason that occurred?

Regards,
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lyndacarol
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Re: I think I was just told I have MS?

Post by lyndacarol »

Scott1 wrote:Hi,

I don't know if you have MS or not but what a burden you are carrying. Why you need repeated shoulder surgery and to have a rib removed may be more important. What was the reason that occurred?

Regards,
I would guess that the misdiagnosis was Thoracic Outlet Syndrome and the first rib was removed.

My question for vender is: Was nitrous oxide used as part of the anesthesia for your surgeries? Nitrous oxide inactivates vitamin B12; and vender's symptoms are consistent with a vitamin B12 deficiency. He should have been screened for a possible deficiency before surgery, and again after surgery if nitrous oxide was used.

Welcome to ThisIsMS, vender.

I urge you to request the following tests from your GP:
#1 a serum B12 test (or the newer, more accurate HoloTc test, if it is available in your area)
#2 RBC folate test
#3 a serum homocysteine test
#4 a methylmalonic acid test (either the serum or urinary form)

All 4 tests should be part of the initial screening for B12 deficiency (the "serum B12" alone is not adequate to discover a deficiency). Vitamin B supplements should not be taken before testing, as doing so will skew the test results.

Additional nutrient testing is also a good idea: for iron, magnesium, zinc.
vender
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Re: I think I was just told I have MS?

Post by vender »

You are correct about the TOS but it actually really helped with the pain in my arm. The shoulder surgerys started with a torn labrum. My shoulders are screwed up from work / life. My GP did do blood work and it was fine (I don't know what he tested for, I told him I was always tired). I have had 5 spontaneous pneumothorax also. Blebs on my lungs. It was the never ending shoulder pain that led to the neurologist and brain MRI. I also have a lower back that goes out and when it does I get a shot in the back that seems to paralyze my leg for about 5 hours. How do steroids effect MS? I guess I'll know more after the brain wave test? It just seems I have a lot of issue that MS could be the answer? Idk.
vender
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Re: I think I was just told I have MS?

Post by vender »

B12 issue. Also I don't know if this matters but I eat well. Fruits vegetables and meat from a real butcher. Good foods. Not a lot of junk food and have always taken vitamins. I love food but can't gain wieght and I have lost my appetite. Is the brain wave going to give me answers?
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lyndacarol
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Re: I think I was just told I have MS?

Post by lyndacarol »

vender wrote:My GP did do blood work and it was fine (I don't know what he tested for, I told him I was always tired)...
How do steroids effect MS? I guess I'll know more after the brain wave test? It just seems I have a lot of issue that MS could be the answer? Idk.
It is a good idea to request your own copy of any test results that are done – it is best to have the actual numbers, memory often fails us.

By the way, extreme or constant fatigue is a symptom of B12 deficiency (as is loss of appetite). The problem with MS and B12 deficiency is that symptoms are the same, they look alike, only testing can tell the difference – there are tests for B12; there are NO definitive tests to identify MS. MS is a diagnosis of exclusion, made after other more likely possibilities have been ruled out.

Steroids and MS? Steroids can sometimes speed up the time a symptom is occurring, returning the person to normal or, at least, lessening the symptom. This has never been my experience; many other people have found improvement with steroids. Steroids do not change the ultimate progression of MS.

Please be sure of the condition you are dealing with. If the fundamental problem is B12 deficiency, steroids can worsen a B12 deficiency.

vender wrote:B12 issue. Also I don't know if this matters but I eat well. Fruits vegetables and meat from a real butcher. Good foods. Not a lot of junk food and have always taken vitamins. I love food but can't gain wieght and I have lost my appetite. Is the brain wave going to give me answers?
Your diet sounds top-notch. Be aware that vitamin B12 is not found in fruits or vegetables; it is only found in animal-sourced foods like meat, poultry, fish, eggs, cheese and dairy products. The pathway from mouth to absorption is complicated and can be interrupted in many places – Are the necessary proteins, stomach acid, enzymes, intrinsic factor produced? Are there problems in the intestines where B12 is absorbed? Is the proper transporter molecule in the bloodstream to carry B12 to the cells? Any person at any age can develop a B12 deficiency.

I have no medical background; I am unaware how the brain wave can give you answers.
vender
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Re: I think I was just told I have MS?

Post by vender »

Hello some new information.

MRI BRAIN N AND W/O GADOLINIUM History: Hemiataxia. Comparison: Previous MRI 6/1/2008.
Technique: Sagittal Ti; axial double spin-echo PD/T2 FS, FLAIR, DWI, pre- and postcontrast MPRAGE, postcontrast Ti.
The diffusion images demonstrate no acute infarct. There is a small nonenhancing focus of T2 and FLAIR signal hyperintensity in the precentral gyrus medially on the right which was not definitely present on the prior study. This could represent a remote area of ischemia or demyelination. No other areas of signal abnormality are identified. The orbital structures and paranasal sinuses appear unremarkable. The midline structures are intact. There is mucosal thickening in the ethmoid sinuses and the frontal sinuses. The flow voids are maintained.
Postcontrast images of the brain demonstrate no evidence of pathological enhancement.
Impression: 1. No acute infarct. 2. There is a small 5 mm focus of nonenhancing T2 and FLAIR signal hyperintensity in the medial precentral gyrus on the right which could represent a remote focus of ischemia or demyelination. This was not present on the prior study of 2008. Recommend a short-term follow-up MRI study to evaluate for any change. 3. No mass effect or pathological enhancement in the brain. 4. Mild mucosal thickening in the ethmoid sinuses and frontal sinuses.


I have MTHFR C677T and A1298C

I am updating because about 2 month ago I got lightheaded "dizzy" for about 3 hours. Then it slowly has gotten to the point I cant drive. When I have a bad "episode" I will get this "ice pick" headache above my right eye (usaully) for about ten seconds. Then "pins" in the face. disconnected. Then I am exhausted. I have am getting a VNG done. I have gone the ENT route. He says "I should tell my neuro about the headaches and its not due to your ENT" He then said "why didnt the neuro do a "tap"? He is doing this "balance test" to rule something out? IDK?

Oh and I had all kinds of blood work for "the stroke" but everything came back fine other than the MTHFR.

Thanks all for your help and Happy Holidays!
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NHE
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Re: I think I was just told I have MS?

Post by NHE »

vender wrote:I have MTHFR C677T and A1298C
Do you know if you are heterozygous or homozygous for each of these SNPs?

Having the two SNPs should be reason enough for a complete test of B12 including serum B12 and/or holotranscobalamin, unsaturated B12 binding capacity, red blood cell (RBC) folate, homocysteine and methylmalonic acid (MMA). Have you had any of these tests?
vender
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Re: I think I was just told I have MS?

Post by vender »

Homozygous wild type? What's wild mean? And I think he did do those blood test. I will check and see what he did.
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NHE
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Re: I think I was just told I have MS?

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vender wrote:Homozygous wild type? What's wild mean? And I think he did do those blood test. I will check and see what he did.
Homozygous means that you have two copies of the gene with the SNP, one from each parent. Heterozygous means that you only have one copy of the gene with the SNP and the other without (the latter could be called wild-type, i.e., the normal gene). Note that you could also be homozygous wild-type and not have the SNP in either copy of the gene.

The MTHFR C677T heterozygous condition results in 40% loss of function of the MTHFR while the homozygous condition results in 70% loss of function. In addition, the MTHFR C677T & MTHFR A1298C compound heterozygous results in 50% loss of function.

http://www.seekinghealth.com/media/MTHF ... -Basic.pdf
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