Tests came back negative, getting worse
Tests came back negative, getting worse
I'm wondering if a spinal tap or other spinal study is necessary to rule out or diagnose MS? I would like to get one to rule out other conditions as well. I am also looking into MS mimics and similar problems but I'm not sure how to test for some of them. The neurologist doesn't seem to understand the whole problem and wants to go on a symptom by symptom basis. I understand this, but it's still not helpful. I am currently experiencing a flare up of whatever is going on and have had some very difficult days the last few weeks.
My symptoms have included:
Visual problems (my eyes hurt, vision seems to get blurry, hard to focus my eyes or to read)
Headaches/migraines, not as common currently. I haven't had a migraine since maybe October
Brain fog, inability to concentrate and being "out of it", also motivation problems and feeling slow
Sensitivity to heat, I get weak especially if I get too warm exercising or in the shower
Dizziness which leads and contributes to balance problems
Muscle weakness. It can be any part of the body but especially the legs.
Walking difficulty has happened due to muscle weakness
Muscle twitches/spasticity
Speech problems- I could be over analyzing but I believe that I slur my words and misspeak words more frequently. Other people have joked about it.
Nausea and stomach pain at times. Nausea happens most often.
Carpal tunnel like symptoms. Nerve and muscle pain in my forearms and wrists. Comes and goes.
Joint pain (I have had this for awhile)
Fatigue and flulike symptoms. This makes it difficult to move and has made me have to stay in bed, as if I was sick.
Chest tightness
Upper back pain
All over pain, like currents of electricity sometimes.
These symptoms do not all happen at once. I have had more problems over the last 3 months and more symptoms arising. I would just like to figure out what is going on so I know I can treat/help it. I am unsure if I should get a spinal study, could it be a mimic? I don't know.
Thanks in advance! That was a lot to read! lol ;)
Re: Tests came back negative, getting worse

take control of your own health.
pursue optimal self care, with or without a diagnosis.
Re: Tests came back negative, getting worse
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Re: Tests came back negative, getting worse
Re: Tests came back negative, getting worse
Re: Tests came back negative, getting worse
Unfortunately, you are incorrect... you can never rule out Lyme and coinfections for several reasons. First, the testing is inaccurate. Second, the steroids you are currently taking are suppressing your immune system and therefore your body will have a more difficult time producing antibodies which is what the Lyme disease test is testing. The steroids make it much harder to get an accurate result. You are better off trying to convince the doctor to give you minocycline which is used for Lyme and MS, is safe and inexpensive. I would look into the cpn antibiotic protocol asap.
Re: Tests came back negative, getting worse
take control of your own health.
pursue optimal self care, with or without a diagnosis.
- lyndacarol
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Re: Tests came back negative, getting worse
Welcome to ThisIsMS, AJB. Many of the symptoms that you list are also common with gluten sensitivity (or its extreme case of celiac disease). This sensitivity can develop at any time in one's life; I urge you to discuss with your GP the possibility of investigating this.AJB wrote: My symptoms have included:
Visual problems (my eyes hurt, vision seems to get blurry, hard to focus my eyes or to read)
Headaches/migraines, not as common currently. I haven't had a migraine since maybe October
Brain fog, inability to concentrate and being "out of it", also motivation problems and feeling slow
Sensitivity to heat, I get weak especially if I get too warm exercising or in the shower
Dizziness which leads and contributes to balance problems
Muscle weakness. It can be any part of the body but especially the legs.
Walking difficulty has happened due to muscle weakness
Muscle twitches/spasticity
Speech problems- I could be over analyzing but I believe that I slur my words and misspeak words more frequently. Other people have joked about it.
Nausea and stomach pain at times. Nausea happens most often.
Carpal tunnel like symptoms. Nerve and muscle pain in my forearms and wrists. Comes and goes.
Joint pain (I have had this for awhile)
Fatigue and flulike symptoms. This makes it difficult to move and has made me have to stay in bed, as if I was sick.
Chest tightness
Upper back pain
All over pain, like currents of electricity sometimes.
These symptoms do not all happen at once. I have had more problems over the last 3 months and more symptoms arising. I would just like to figure out what is going on so I know I can treat/help it.
On 12/2/2013 Dr. Amy Myers, M.D. explained 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.
@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.
In part 2 of his 7-part presentation on celiac disease, Dr. Gary Kaplan, D.O., described the 4 forms of the disease (Typical, Atypical, Silent, and Latent):
At 0:30 he says that the atypical/extraintestinal form includes minimal gastrointestinal symptoms AND may include:
iron deficiency/anemia
dermatitis herpetiformis
chronic fatigue
joint pain
infertility
neurologic symptom (ataxia-this is weakness or inability to control muscles, neuropathies – this is numbness/tingling/even pain in your extremities)
vitamin deficiencies
ADD
osteoporosis/osteopenia
autoimmune disorders - list available at http://www.aarda.org/
migraines
The blood tests must be taken when the patient has not been on a gluten-free diet; the tests measure the patient's reaction (or lack of reaction) to gluten in the diet. (The longer a patient has been gluten-free, the less chance there is of measuring anything and getting useful results.)
Some physicians might want to take only one or two blood tests, but the Celiac Disease Center at Columbia University recommends the following set to maximize the chance of getting accurate results:
Anti-gliadin antibodies (AGA) both IgA and IgG
Anti-endomysial antibodies (EMA) - IgA
Anti-tissue transglutaminase antibodies (tTG) - IgA
Total IgA level
Depending on the results of the testing, a physician might proceed with an upper endoscopy, long known as the gold standard for a celiac diagnosis.
Re: Tests came back negative, getting worse
- lyndacarol
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Re: Tests came back negative, getting worse
Gluten is hidden in many areas that we would not expect – toothpaste, seasoning mixes, charcoal, teabags, even the old stamps and envelopes that we used to lick. Perhaps you have "been glutened" unknowingly.AJB wrote:I probably should have added that I am gluten intolerant and have been GF almost 2 years. I tested negative for Celiac disease but I have remained off Gluten because it caused me problems. There are about 7 people in my family that are intolerant and there are genetic autoimmune disorders, none pertaining to anything neurological however. Rheumatoid arthritis, thyroid problems etc...
Re: Tests came back negative, getting worse

Re: Tests came back negative, getting worse
take control of your own health.
pursue optimal self care, with or without a diagnosis.
Re: Tests came back negative, getting worse
The levels I am low are iron, and high in Rubidium, Thallium, Nickel, Gadolinium and Cesium. The doctor that tested for those was pretty puzzled, as I got an MRI when I was 8, and I am now 20. I can do treatment for that but the times I did it I got a fever, felt sick etc... So I don't really know.
Re: Tests came back negative, getting worse
take control of your own health.
pursue optimal self care, with or without a diagnosis.
Re: Tests came back negative, getting worse

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