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NicoleAJ

Multiple Sclerosis

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I don't think that the bloodwork they've done has been very specific just yet. I've been tested for lyme disease and a few other things, and my normal bloodcounts all looked good (high hemoglobin, etc). I also don't have mono--I had a pretty nasty case of it in college, and reoccurance only seems to happen in 1-2% of the population, and this just doesn't feel like that. I've also been vaccinated for meningitis. I haven't been tested for Epstein Barr though.

Isn't the Epstein-Barr virus the virus that causes the infectious mono? Same virus, right? That would mean if you've had mono, you have the EBV, but that also if you have had mono, you shouldn't have to deal with EBV stuff again.

Good news--the MRI of my brain came back normal. Thank goodness! We still don't have answers, but without lesions on the brain, I'm not really concerned about MS anymore. I'm going in for an MRI of the cervical spine and an EMG of the right leg next week.

Lorka--I do stretches but mostly of the back and neck since my physical therapy was prescribed during the time when the neck and back pain was the most unpleasant symptom, but I've started to do some more leg stretches recently. I'll just have to learn which ones help the nerve pathways in the leg the most.

Phew! That's great!

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NicoleAJ - I would be careful about first readings of MRIs, my sister (and many other people) have gone undiagnosed (well, misdiagnosed... we knew it was MS) for awhile ... In my sister's case, 11 years (she is 26 now).

anyway, good to hear either way! about the stretches, if you're interested, i can talk to my mom and see if i can describe them to you, or instead, see if she still has her sheet from years ago and scan it for you.

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Please be sure to get tested for lyme disease. Don't expect your neuro to use a good lab for this!!!!! Basically, neuros "don't do lyme!"

you may be interested in this:

MS and Lyme

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Also...white lesions on the brain is common in lyme disease too.

This is contained in the link above. There's a lot of good info there.

"MS" has no known cause or cure.

Always be leery of that kind of diagnosis.

It is a very common misdiagnosis in patients with Lyme.

The horrific part is that the treatments prescribed for MS depress the immune system, and if indeed infection is present, considerable damage can be done.

Lesions in the MRI are not uncommon in Lyme (or other neurologic infections).

There are more Docs now who suspect bacterial cause to what is labeled as MS, even if they do not link it to Lyme.

Link below is a good compilation of peer reviewed literature re MS and Lyme.

http://www.lymeinfo.net/multiplesclerosis.html

gayle

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The docs were so sure I had MS that they did MRIs regularly for six years just waiting for the scales to show up. Turns out that, like many celiacs, my nerves had been affected. The neurological damage from celiac disease mimics MS closely. The good news is that it gets better the longer you are gluten-free. In my case the damage was so bad that I will probably not fully recover. Still, I am so much better that I won't argue.

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The docs were so sure I had MS that they did MRIs regularly for six years just waiting for the scales to show up. Turns out that, like many celiacs, my nerves had been affected. The neurological damage from celiac disease mimics MS closely. The good news is that it gets better the longer you are gluten-free. In my case the damage was so bad that I will probably not fully recover. Still, I am so much better that I won't argue.

Cdford--did your neurological symptoms show up before your celiac diagnosis or after? All of my neurological symptoms showed up two years to the day after my celiac diagnosis (when I started the gluten free diet).

Penguin and Tailz--thanks for the info on Epstein Barr--that's a relief. Also, Tailz, I have had one weird symptom that involves weakness in my face--when I was on prednisone there were two nights where I woke up and my eyelids wouldn't open on their own; I had to force them open with my fingers, not because they were crusted with anything but because they were just too weak to open on their own.

Again, thank you everyone for your kind words of support; it really means a lot to me.

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I'm sorry to hear what you are going through. I spent 8 years worring about the possiblity of MS. So, I totally understand what you are going through and feeling. Please, try not to fret until after you've ruled out everything else.

My symptoms have all been explained:

Numbness in the face, slurred speech, dizziness, seizures=Hypoglycemia

Numbness in the limbs and arms=herniated neck disc/flattening of spine/protuding discs, etc (looking like osteoprosis/degenerative disc disease at 35yrs!!!)

Bowel and bladder problems=food/fat intolerances

And lastly, Sensitivity to heat/stumbling/all of the above/mood swings/etc=pancreatic tumor caused by on going pancreatis, caused by food intolerances/allergies

(Sounds like I was in a car wreck or something. No, just not getting the vitamins I need to remain healthy.)

Anyway, it was surprising to beable to find an answer for everything, but it did take 8 years to find all but the real cause of a lot of problems, which is the gluten/food intolerances. Because of it I can't absorb iron/fats/sugars/calcium/etc the way I should and need to.. so I end up with numerous problems.

Hang in there. And please let us know how you are doing.

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I've been tested for lyme disease and a few other things, and my normal bloodcounts all looked good (high hemoglobin, etc).

I have heard that the Elisa test is not reliable and that the test to have is the Western Blot done through a lab in Palo Alto called IGeneX. I am currently using the Salt/Vitamin C treatment for Lyme as a diagnostic tool, if you want more information PM me.

Lyme often affects the eyes, also many people find that most of their symptoms are on the left side of their body.

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Here's another link on MS and Lyme...There is research in this one. Read all the way down.

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I have heard that the Elisa test is not reliable and that the test to have is the Western Blot done through a lab in Palo Alto called IGeneX. I am currently using the Salt/Vitamin C treatment for Lyme as a diagnostic tool, if you want more information PM me.

Lyme often affects the eyes, also many people find that most of their symptoms are on the left side of their body.

You got it!!!! Igenex is the best!

My worst symptoms are on the left side too....but many report the right side is their worst. I think it can be either...sometimes it's according to the location of the bite.

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I wonder if they need to do a spinal tap to diagnose this?

Don't do it! You have a 20% chance of finding Lyme through a spinal tap. And then you'd have some lame brain neuro deciding if it's lyme when he would have no clue.

Your best bet is a blood test through Igenex Labs. If you can find a cooperative GP you can order the kit yourself and take it to a lab or GP.

Here's a list of lyme symptoms....and yes, they are very similar to celiac symptoms!

Lyme Disease Symptoms List

1. Unexplained fevers, sweats, chills, or flushing

2. Unexplained weight change--loss or gain

3. Fatigue, tiredness, poor stamina

4. Unexplained hair loss

5. Swollen glands: list areas____

6. Sore throat

7. Testicular pain/pelvic pain

8. Unexplained menstrual irregularity

9. Unexplained milk production: breast pain

10.Irritable bladder or bladder dysfunction

11.Sexual dysfunction or loss of libido

12.Upset stomach

13.Change in bowel function-constipation, diarrhea

14.Chest pain or rib soreness

15.Shortness of breath, cough

16.Heart palpitations, pulse skips, heart block

17.Any history of a heart murmur or valve prolapse?

18.Joint pain or swelling: list joints_____________

19.Stiffness of the joints, neck, or back

20.Muscle pain or cramps

21.Twitching of the face or other muscles

22.Headache

23.Neck creeks and cracks, neck stiffness, neck pain

24.Tingling, numbness, burning or stabbing sensations, shooting pains

25.Facial paralysis (Bell's Palsy)

26.Eyes/Vision: double, blurry, increased floaters, light sensitivity

27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity

28.lncreased motion sickness, vertigo, poor balance

29.Lightheadedness, wooziness

30.Tremor

31.Confusion, difficulty in thinking

32.Diffculty with concentration, reading

33.Forgetfuiness, poor short term memory

34.Disorientation: getting lost, going to wrong places

35.Difficulty with speech or writing

36.Mood swings, irritability, depression

37.Disturbed sleep-too much, too little, early awakening

38.Exaggerated symptoms or worse hangover from alcohol

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From cdford:

My neurological problems were so bad prior to my diagnosis that I was bedbound and unable to even feed myself or go to the bathroom without assistance. After being gluten-free for almost 5 years, I can now use a walker around the house, cook some days, drive on good days, etc.

Some of my damage was permanent, but a lot of the absolute worst symptoms have settled down to only being obvious on really bad days.

Where the EBV (Epstein Barr Virus) is concerned, it is not uncommon to have recurring episodes. It can also damage the myelin sheath and cause neurological symptoms. If that occurs, it is usually short term damage (ie not permanent, but short term is an indefinite term because the time to regenerate differs from person to person). I know this one from experience because I had multiple episodes until I had been gluten-free for a couple of years.

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On 31/08/2006 at 1:47 AM, Guest Doll said:

 

 

I'm pretty scientific, (but open-mined!) and this actually intrigues me! Thanks for posting the systemic candida info. We still don't know what the trigger is for the "leaky gut" is. I have always suspected a virus/bacteria, but for sure it could be yeast...

 

Have you any published stuff I could read in which people have had regression in their autoimmune diseases through curing the yeast overgrowth? I would be interested to know if we could prove people with autoimmune diseases have an overabundance of yeast.

 

I personally have taken courses of Diflucan, and while I didn't notice any change in my autoimmune conditions, I have had problems with yeast in the past.

 

Interesting.

I saw this today and thought I best check out the science behind this Candida theory. And honestly it's sketchy at best. Everyone experiences fungi infections from time to time.

Don't buy into something without adequate research. You could do more harm than good. But here is just one article where someone has investigated this bold claim about Candida.

https://www.self.com/story/candida-overgrowth-problem-too-much-yeast-no-too-little-science

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