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2157870 tn?1336742527

My PCP suspects Autoimmune disorder: sending me to rheumatologist

Hi friends,
I am new to this forum. I am a 37yo female of previously good health, athletic. Last fall I had my first bout of strange major leg weakness, and the symptoms flared up this past March. Since then, I have been getting progressively weaker, now making it difficult to walk (I have not fallen, but am afraid that I will). My other frequent symptom is blurred vision in one eye, mostly towards the afternoon or end of day. I always feel better after I rest and am still (but I don't feel like sleeping all the time, either).

So far I've seen a neurologist a couple of times, who ruled out MS and Myasthenia Gravis. I had a normal MRI of the brain and upper spine, an abnormal EMG (which didn't concern him), negative for Lymes, AChR negative for myasthenia, and a neuropsychological exam which showed major deficits in word finding and memory.

At a meeting with my PCP this week he said, "Based on your symptoms and tests, it seems like this is autoimmune related.... like your body is attacking the muscles in your thighs and arms". Thankfully there's a rheumatologist nearby whom he's worked with and has now referred me to. I am to see him within two weeks.

It is amazing to think that one year ago I was running 5k's, two years ago I was in a bodybuilding competition... and now I have difficulty walking two blocks at a slow pace. Yesterday I got a handicapped parking permit. What a journey.

Just wanted to make an introduction here, and I welcome your thoughts.
2 Responses
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1530171 tn?1448129593
Hey restorativepose.
Welcome to the forum.

I can express more freely here, as I'm not a medical doctor.
There are a number of chronic neuro-degenerative and auto-immune
conditions that have a pathogenic infectious basis, going undetected,
sometimes for life.
Lymes Disease and Pathogenic Mycoplasma Infections,
are typical examples, often  go misdiagnosed or undiagnosed.
In most cases the difficulty lies mostly in the diagnostic and treatment procedures, protocols and methodology.

As these pathogens have an incredible ability to evade detection by the majority tests available - they can disguise themselves as regular cells,
wrapped in cellular membrane- and over time  may take over parts, organs and consequently entire systems in the body.

How did your Neuro rule out Lyme Disease? I'm not suggesting that you may have it but it HAS to be ruled out, as it can mimic ANY set of symptoms of ANY disease!!!
It is one of the most common undiagnosed or misdiagnosed conditions, with MULTIPLE times more false negative results, than not!
The ONLY hope is with seeing an LLMD (Lyme Literate Medical Doctor)
and getting tests for a complete Lyme, Mycoplasma and other Co-infection
Panel by IGeneX Labs.
LLMDs are becoming very difficult to find, as there's a lot of controversy
with the ruling medical authorities, regarding procedures, IDSA being the one dictating the rules.
So far this has kept tens of thousands of suffering patients in Limbo,
riding a medical merry-go-round, and getting "dizzier" and more "nauseated" with each turn.

As Dr. Mathur stated, you are young and have a fighting spirit within you.
Take advantage of this in order to save your life from becoming an "unsolved medical case" or worse a "misdiagnosed medical case" which is like a medical life sentence.

There are many triggers for these conditions, rooted in certain imbalances.
Stress, physical and emotional, chronic deficiencies, lifestyle - even when we think it is very healthy, significant traumatic events, are all possible
triggers.
There are many things you can do.
I would start by becoming your own health coach. You had the discipline to
become a bodybuilder, and I know what it takes, as I have done it for wellness and lifestyle purposes-not competitive though.
So you can do this. Become as educated as possible in health matters,
be proactive, join forums, stay mentally focused and take charge.

Important! A strong immune system and a well balanced emotional state
are necessary, before any cure can be experienced.

keywords for your searching : ILADS, LLMD, IMMED, Dr Garth Nicolson,
IGeneX

Wishing you well.
Niko
Helpful - 0
351246 tn?1379682132
MEDICAL PROFESSIONAL
Hi!
I am sorry to hear about your condition but an glad to see the fighting spirit in you! Muscle weakness can be true type as seen in muscular dystrophy, inflammatory myopathy, or neuro-muscular myopathy (myasthenia gravis). It can also be a perceived muscular weakness as seen in chronic fatigue syndrome. Amyotrophic lateral sclerosis, lupus, and Lymes can also cause muscle weakness. Do discuss this with your doctor and get yourself examined. Take care!
Helpful - 0
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