Avatar universal

Undiagnosed...long post.

I am a 25 year old female, we recently moved and can not see a new neurologist until November. Please help with any insight.

I have had neurological symptoms on and off for 4 years. They began a few months after the birth of my daughter in 2012. With vision problems, lost vividness in color and my right eye is now permanently blurry. They steadily got worse, would notice somewhat of a pattern to the symptoms where certain ones would come for weeks and then leave for months. Others just continued to get worse. Through this last pregnancy (gave birth 7/4/15) most of them seemed to disappear, except bladder dysfunction and fatigue (both got much worse to where I had to catheterize). I am 8 wks postpartum and I am having old symptoms and new ones return with a vengeance.

My eyes have very shaky/dancing vision hard to read or focus on anything, with intense eye pain especially when looking up. I am getting tremors at night, like a trembling in my head, I feel as though I'm in an earthquake when I'm trying to fall sleep, almost as if someone is shaking the bed. Also when relaxing and trying to rest I have jerky leg and body movements. It started about 2 years ago, just my leg would jolt trying to wake me up. Now before I'm even close to sleeping they start and my whole body with have these rhythmic jolts. Both legs, then upper body, then arms, then whole body. I have painful prickling up and down both legs. I seem to be veering to the right when I walk, most prominent when I'm tired, but nerve wrecking when holding a newborn. I also have a very strange tightening/shocking pain in my shoulders and neck. And fatigue has taken a very sudden blow to my body starting just a couple days ago. I am so lethargic it is difficult to take care of my baby during the day. I have been napping just 30 minutes to an hour after drinking coffee. Not normal, I am sensitive to caffeine! Then one of the symptoms I have dealt with the most and worse out of everything, muscle spasms. Mainly in my legs for the first 18 months I had them, my muscles get so tight at night in bed they feel paralyzed, extremely painful tightening, then to top it of I have numbness through the legs so they feel impossible to move. Now I am getting them in my arms and wrists, at night I have to sleep with my wrists bent down because they are spasming that way. Nerve pain has also been an enemy of mine. Literally had it everywhere, severely.

My last MRI (without contrast) was about a year ago was clear, I have never had a lumbar puncture. I have had an abnormal EEG believed to have partial tonic seizures. Started 2 years ago when most of these symptoms were starting to really affect my life. I was dealing with severe weakness in left leg, daily chest tightening (severe all I could do was hold heating pad and breath through for hours till it went away, only to come back the next early evening. With no known cause, EKG normal. As well as new vision problems my eyes do these freaky sudden movements when focusing, reading is the worst, literally my eye is suddenly moving back and forth uncontrollably. I'm feeling very afraid not knowing what is happening to my body. Do you have any insight? Please help!
3 Responses
Sort by: Helpful Oldest Newest
Avatar universal
I would start with Vitamin B12, folate, Ferritin levels as well as a full thyroid panel that can check for antibodies.  Both commonly become more pronounced following a birth of a child.  Your story sounds like so many I read, and have also experienced myself from a Vitamin B12 deficiency/ Pernicious Anemia. I also have Hashimotos Thyroid as well to complicate it more. Both are Autoimmune illness'
Helpful - 0
1530171 tn?1448129593

Things to look into or to rule out:

1. Pathogenic infections such as  All Borrelia species- not just Borrelia Burgdoferi,Anaplasma phago­cytophilum, Babesia microti, Babesia duncani,Bartonella henselae, Bartonella quintana, Coxiella burnetii, Ehrlichia chaffeensis,Francisella tularensis, Mycoplasma fermentans, Icognitus and other Mycoplasma species, Rickettsia rickettsii, viruses such as HHV-6,nematodes. These are extremely difficult to detect!!!
Do a search her in medhelp for Dr. Garth Nicolson who is an expert in this field and was a contributor here a while back.

To rule out  these conditions.you need to find an LLMD and have
a complete Borellia, Mycoplamsa and Co-infections panel using IgeneX Labs.

2. HLA panel to verify the body's ability to fight biotoxins

3. Heavy metal toxicity.

4.  Stool analysis  for pathogenic bacteria, parasites, yeast, and levels of beneficial  bacteria, as well as  leaky gut syndrome.

5. CMV, EBV, HHV-6, HSV1 and HSV2 test with MDL labs

6. Hypothyroid type 1 & 2- just like diabetes, there's type 1 and type 2.
The vast majority of ENDOs do not look into type. Very common!
Ask for Free T3, Free T4 and Reverse T3

7. Deficiencies. Tissue magnesium-not blood magnesium!
Glutathione, Potassium, Neurotransmitters, B12 Methylocobalamin, Methylfolate, Vit. D3

8. Comprehensive metabolic profile for organ integrity evaluation as well as fluids and electrolytes.

9.SPECT (single photon emission computed tomography) brain scan
which shows blood flow and more. Offers much more dynamic imaging than MRIs, which are more static.

10. PTSD  Any past traumas, recent or old, including childhood and not in memory.
Hypnotherapy is suggested to uncover any repressed memories brought to the surface and to have them processed & dealt with.

11. Complete hormonal panel. Adrenal fatigue must be ruled out.
Not recognized by conventional Endos.
FYI look into BioHealthLabs Functional Adrenal Stress Profile.

12. MTHFR gene mutation.

There are probably more tests that could be done and more things to rule out, however, this is what I came up, at present.

Please note that my suggestions and comments are not intended as replacement for medical advice.

Best wishes,
Helpful - 0
4454327 tn?1405203128
Hi.  Sorry you are going through this.  Have you had your ears checked out?  Have you ever heard of Nystagmus?  Definitely  scary not knowing answers right now. Hopefully someone who knows more than me will chime in.
Helpful - 0
Have an Answer?

You are reading content posted in the Autoimmune Disorders Community

Top Autoimmune Diseases Answerers
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
Can I get HIV from surfaces, like toilet seats?