Tests came back negative, getting worse

[AJB]

Hello all, this is a lengthy story so grab some popcorn! ;) I started experiencing strange symptoms in August of 2013. I got my first full blown migraine and seemed to experience subsequent migraines and migraine symptoms after that. I figured I must be having some sort of headache problem. However, the migraine symptoms (nausea, weakness, eye problems, headache, mental fog...) seemed to linger and sometime occurred without the normal course of a migraine. This continued about 2 months until I started getting other strange symptoms. The symptoms come and go. It eventually started getting much worse around Christmas and I went to see a neurologist in January. I have been tested for MS with an MRI of my head and a nerve response test (EEG of EMG, I forget.) Those tests came back negative. So far other tests for Lupus and similar conditions are negative. The neurologist did note that I have a lack of reflexes (especially in my legs) and he said I showed signs of carpal tunnel. The symptoms that could be carpal tunnel come and go.

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 ;)

[jimmylegs]

hey there there will be others who can contribute re ms testing more effectively than I, but for myself I will inquire if you've considered or received any referrals related to nutrient testing?

[AJB]

As in testing of minerals and the like? All my levels are fine except I have low iron levels. My alternative medicine doctor showed that I had some heavy metals related to and MRI in the past but the levels are not very high, just noticeable. Is that what you are referencing?

[santanabmw]

This is like reading my story. I have been experiencing this symptoms for yrs on and off but more so since last May. I was originally told it was a herniated disc in my neck, then a chiairi malformation so was sent to a Neurologist for a second opinion. He did a lumbar puncture and a Ct scan of the brain. The scan didn't show up anything apart from a mild Chiari but the LP fluid showed I have raised levels of igG in the serum which points to demyelation basically he feels it it CIS, an isolated incident of MS which I am unsure about as it has been going on for yrs. I am now on my 5th day of steroids and struggling. I have asked to be checked for Lyme Disease and co infections, this has been a job in itself because no one wants to even discuss the idea of it being this. I am going through the mill as well as I feel like I am mad and that they will just get sick of me but when it comes down to it all i want is to have my life back. I am going to finish the course of steroids and then get my blood and serum checked for lymes at least them=n in my own head, i can rule this out.

[AJB]

Wow. I am sorry. I have noticed many here with similar stories like yours and mine. I understand difficulty with the doctor. My family was not supportive at first and it was tough. Ultimately you are in charge of your body so make the docs sick of you if you have to! It's much better than just dismissing it. I hope you can figure it out. Like you I believe this is all related and definitely not making it up. I completely understand wanting your life back. Best of wishes and I hope to see some results or a conclusion for you soon!

[bartman]

santanabnm,
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.

[jimmylegs]

re minerals - yes those and some key vitamins. so do you have results for serum zinc and serum magnesium on file, in addition to serum ferritin?

[lyndacarol]

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.

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.

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.

[AJB]

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...

[lyndacarol]

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...

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]

Ehh possibly. But all of my initial symptoms that led to gluten problems are gone so I would think those would come back. Just my thinking. The symptoms I have (in my opinion) are much too severe for that unless it's just a weird case. Thank you for your input though!

[jimmylegs]

the gluten intolerance issue leads me to re-iterate my earlier question re serum zinc testing. did you have a serum zinc test on file at all? (or serum magnesium for that matter?)

[AJB]

I do not have written records. I believe those levels are normal from what the doctor said but it's possible they were not tested. I can look into that.
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.

[jimmylegs]

ok. if the doc ran the usual panel it will not have serum zinc or magnesium. if you do have them on file with the doc's office, would be very useful to know (but you have to get a copy - the answer 'normal' is not good enough. both ms patients and healthy controls are 'normal' - but patients are low-normal, and healthies are high-normal. helps to know where exactly your results fall within the normal range).

[AJB]

Okay thank you! That's definitely helpful to know.