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163240 tn?1337904361

havent been here in awhile rant

It is going on almost 5 yrs now and still no dx. I am tired of fighting and my neuromuscular doctor can bite my butt. I am tired of dealing with him since i get no where. Not even my mom who also sees him likes him. in the past year i have only seen him once and all he does is rescheduled my appts. No one should have to wait so long to get a dx. I get absolutely no treatment at all. I cant keep living with all the pain, numbness, creep crawly feeling, eye problems, muscle weakness, muscle fatigue, general fatigue, pin and needle feelings, bloating, bowel problems, urinary problems, ataxia, sleeping problems, brain fog, memory issues, and many more. I have good day but many many more bad days. Just sort of ranting and checking in.
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1530171 tn?1448129593
You don't need  to wait for your appt.
Just do a gluten-free diet challenge for a few weeks.
You will know if you experience improvement, but just be aware that the effects of gluten can linger around for many months, after you eliminate gluten from your diet. Many items, like shampoo, play-doe, salad dressings
sauces, soups etc. contain gluten. Just look up online the list. It's long!
  
Many conditions may present just a few of the symptoms
with one person, while others may suffer a wider spectrum of symptoms from the same disease, as each  person's constitution is different and it also depends on their genotype and phenotype.

For any type of hypothyroid, whether secondary or sub-clinical, the compromised cellular  energy may affect any part of a persons body, even with all the standard serum tests returning negative for hypothyroid.

In adrenal fatigue, the one thing to watch out  for is hidden stress, something that we may not aware of at all, as it is not necessarily
a conscious process.

For mycoplasma infections and co-infections which can target any part of your body with just a few symptoms or cause severe illness where one can become bedridden, you may want to search Dr. Garth Nicolson here at medhelp. He's a regular contributor and the top expert in this field.
Most doctors don't have a clue about pathogenic mycoplasma and most tests cannot detect them.

The OAT axis imbalance would be a stronger possibility if you had ovarian
hormonal  and gynecological issues in the past in addition to ongoing  fatigue and weakness. It may be somewhat linked also to low adrenal function
To really test accurately for this, only a holistic endocrinologist can help you with that, since conventional endos don't recognize such imbalances,
until they become crisis!

Best of luck and I hope you find some answer soon.
Niko

Helpful - 0
163240 tn?1337904361
I have looked up all those you listed. None of them even come close to what my symptoms are as they have way more symptoms that I dont even have. I have been tested multiple times using different types of test for thyroid problems and have had every lyme disease test ran that you can possible think of having ran. the only one i really cant find anything on is the first one. I will say that I dont live a stressful life at all. I am easy going and roll with the flow. I get worked up here and there but that is usually only dealing with these doctors.  I have not been in touch with Maria. I had given up hope for awhile with this formn as it doesnt seem like anyone posts in it anymore. My bowel problems they believe are either coming from celiacs or IBS I have an appt in may to be seen about that.
Helpful - 0
1530171 tn?1448129593
Hey chefaid90!
It's been a while since someone posted here.
I feel bad for you, but you know, I have a couple ideas t.

What if your suspicion for ms is taking you the wrong direction?

I will give you 5 different possibilities, each of them consistent with many of your symptoms- to a degree- as causative factors or co-factors.

1. Ovarian-Hypothalamic-Thyroid Axis imbalance.
2. Adrenal fatigue stage 2 or stage 3
3. Hypothyroidism (likely secondary)
4. Pathogenic Mycoplasma infection and /or co-infection
5. Lymes disease/ Neuroborreliosis

All of the above are very difficult to diagnose and treat through conventional doctors with the exception perhaps in some simple cases  of hypothyroidism and early stage lyme disease.
If you want to consider  doing some research for these, I wouldn't mind to
offer you some guidance, should you find that some of these possibilities
resonate with you.

Sorry, things haven't improved for you, but hang in there and please keep in touch.

By the way, I have lost touch with Maria, the founder of this group.
Have you had any exchange with her on the forum, perhaps at the ms community?
Best wishes
Niko


Helpful - 0
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