Mystery illness.. symptoms of ALS + more

[bny796]

   any advice is GREATLY appreciated, I am apparently a medical mystery which is terrifying!

I am a 31 yo female 8 months post partum (on heparin during pregnancy with hyperemesis during pregnancy) Had an IUD placed 6 weeks post partum and it perforated- had to get it removed plus blood transfusions.. since then have been weak.. started losing massive amounts of weight with diffuse muscle wasting (temple wasting is what starttled me first) I lost 16 lbs in about 6 weeks, but also realized that i had gone from one bowel movement every other day my whole life to up to 20.. GI workup suspected celiac.. went gluten free.. and thats when the neuro stuff started
  The same week I went gluten free and my GI symptoms seemed to improve My right knee felt weak, then a week later the top of my forearms felt really crampy and achy.. then I started to twitch all over my body (not my face though- i have had twitches in my legs after even walking since pregnant with my daughter 3 years ago) then i started losing dexterity 1 week after the knee weakness started (just find motor skill loss which I need at work)  I have weakness in the tips of every finger- pushing buttons grabbing small objects is difficult, but i still get it done and the base of my thumbs - both equally.. and my thumbs and wrists are stiff
  All night every night my body twitches and spasms I feel like I have been hit by a truck when i wake up every morning.. My GI stuff flares at times, which at those times I feel STARVING .. my hands may have some muscle wasting, but i have it all over my body... MRI brain and neck =normal... EMG a physiatrist said was normal (he saw fasics on one muscle, but said they looked like the benign kind- do they look different?) then the neurologist said it was a poor study but that i had diffuse neuropathy- motor and sensory- nerves functioning like a 90 year old
  My face is tired when I smile- It's hard to laugh, or get my face into the noromal "crying position" when I get upset about all of this. I am more aware of my swallowing the last 2 weeks and certain words are also a litlle slurred - this has been on and off for months however..
I have a second opinion with a neuro this week - first one suspected maybe CIPD.. but that we will just wait and see.. I'm of course terrified.. with two kids under 2 years old, and my function isn't intermittent, its constant I also feel like I have "dead arms and one leg" every single night i wake up liek they are asleep.. my b6 levels came back elevated and vitamin D low, otherwise wnl.. any suggestions on where to go next!?

[ewford]

  Your symptoms are ALL chronic intracellular bacteria infection symptoms.  prof Garth Nicolson, Nobel nominee has found that either Borrelia Burgdeferi (Lymes) or another Borrelia species (will always show neg on a Western Blot) test OR a Mycoplasma bacterial infection.  

   Lyme disease is a VERY complicated disease as it has coinfecions of Bartonella, Babesia, Human Granuloma Ehrlichia and Mycoplasmas.  If you have pain in your ankles, feet, chronic headaches, It is usually a Bartonella sign.  Babesia causes air hunger, retching (feeling of throwing up), headaches, flu like symptoms, it also causes the red blood cells to swell up so they cannot pass through the capillaries in your brain, hands, feet and skin.  Borrelia Burgdeferi (Lymes bacteria) causes all sorts of symptoms such as headaches, facial ticks, muscle fasticulations, irritable bowell, CFS, symptoms of MS, ALS, Lupus, Hashimotos, Graves, etc.

  I would seriously check out   IMMED    www (dot) immed (dot) org  and look at Autoimmune illness or fatigueing illnesses.

  Does your throat hurt, neck stiffness, cracking in neck, sensativaties to light, sound, irratability, bouts of crying, endometriosis or hysterectomy because of cysts, muscle and joint pain that travels from day to day?

  Contact ILADS and find a doctor near you that treats chronic bacterial infections.  What happens is the Mycoplasma or Borrelia suppress your immune system, all latent viruses re-emerge ( HSV1&2, HHV 5, 6, cytomegalo virus, Enteroviruses, etc) and you become chronically ill.  The T4 helper cells are dissabled and stop looking for cancerous tissue, the macrophages stop working causing the immune system to stop "cleaning up" fungal infections so you now have a chronic intracellular bacterial infection, viral infections AND out of control fungal infections.

  Dr Garth Nicolson on the Autoimmune Expert page would be your best bet to get cured.  Pay the $ to get an answer from him.  It is worth it.  He is truly THE expert (Nobel Prize nominee, absolutely brilliant Cellular Patholigist.

[bny796]

Thank you so very much for your time! I greatly appreciate it and your suggestions! There are a few ideas you mentioned that I will also add to the workup.. It's the consistent hand weakness that worries me the most out of everything, however it's not "clinical weakness" from what the dr's can tell - though I can tell everyday all the time.. but hoepfully it's just percieved weakness afterall!  Thanks again for your time!

[Dr. Kokil Mathur]

Hi bny796! Yes, these symptoms can be terrifying! One possibility is multiple sclerosis and since the MRI is normal, a spinal tap may be diagnostic. With a normal EMG—ALS is partially ruled out. Nerve conduction velocity should also be done. Since MRI of brain and spine are normal, spinal cord tumor, multiple sclerosis, a herniated disk in the neck, syringomyelia, or cervical spondylosis are ruled out.
In such a situation, I would suggest you get the blood levels of the following checked if they have not already been checked: potassium, calcium, sodium, magnesium, vitamin B complex, or vitamins B1, B3, or B6 and Vitamin D. Generally deficiencies of any of the above can cause muscle twitching and spasms in localized or generalized areas of the body. Get your kidney function, parathyroid gland function and adrenal function tests done because these affect the electrolyte balance in the body. Stress, alcohol, caffeine and fatigue all cause similar symptoms. Hence if you take alcohol or coffee then cut this down. Sleep at regular hours and see if it helps. Certain sleep disorders and peripheral nerve disorders due to diabetes or hypothyroidism can also be the cause.
Since I cannot examine you and know other related conditions you may be having, nor is a detailed history possible on net, I have listed the various possibilities that should be looked into. Please consult your PCP for primary examination followed by proper referral.
Take care!