Hello everyone, my name is Irina, I am 38 years old female. Never before had I any serious problems with my health. Starting last November I noticed lack of strength and slight pain in the back of my left arm and leg. Short time later my left leg started feeling really cold,( abnormal sensation) from toes up to my knee, I always wanted to put on multiple socks. It seems to be just a feeling of sensation because for a doctor both limbs had the same temperature. I visited my GP and was sent to neurologist. Routine exam did not show anything. MRI with contrast performed on December 27th 2017 did not show any neurological abnormalities. At the end of December another symptom manifested - unregular sometimes rhythmic sometimes not jerks(twitching) of fingers/muscles ( myoclonus) . As well as feeling of stress and anxiety, depression.
Later it became not only myoclonus of my muscles, but jerking of hands and feet, neck in relaxed condition. At the end of Jenuary I started feeling burning sensations (as I understand parastesis) all over my body - face, back, legs, and after that my skin sensetivity was reduced. In certain areas I felt intense pain a few times and after that those areas became numb. Also I noticed problems with my eye sight, more precisely focusing my eyes, reading from far distance. (what I could read before, I can not now). I went to neurologist with these symptoms again, routine exam did not show any problems, 30 minute EEG was also normal according to a doctor. Neurologist suggested waiting and recommended a psychiatrist, psychiatrist prescribed pills ( escitalopram, mirtazapine), that helped me somewhat with anxiety, but did not address the problem with my symptoms, which are getting worse. Today I have the following symptoms: 1. Regular Burning sensations of different areas of my skin on feet, legs, face. 2. Worsening of vision, focusing of eyes, pressure on the eyes.3.Light photofobia. 4. Pressure in my head, especially forehead and ears (no pain) 5.. Myoclonus jekrs, which, I think because of antidepressants subsided, but not completely gone, Yesterday (March 20th) I had an eyeball twitch, but did not record it in time. 6. Occasional inner tremor in my cheast.. 7. Much less sweating (for prolonged time). Lime decease test was negative, Vitamins are all normal, overall blood work is normal. I did not have lumbar puncture. Does it sound familiar to you? Many thanks in advance for your comments!
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the burning, or sometimes freezing sensations. Regular Burning sensations of different areas of my skin on feet, legs, face. 2. Worsening of vision, focusing of eyes, pressure on the eyes.3.Light photofobia. 4. Pressure in my head, especially forehead and ears (no pain)
I think it would be better to get a second opinion from a Neurologist or Rheumatologist.Don’t panic as it might be something very simple but for sure continue consulting with experts and medical professionals.
I have the symptoms you describe, including pretty extreme problems with balance and walking. Could this be a B12 deficiency or possibly CIDP? I am taking 1,000 cyanocobalamin weekly for a diagnosed B12 deficiency of 87 (diagnosed about 3 months ago); however, my neurological symptoms have not improved. Last time checked B12 landed in the 650 range. So dr has told me to go down to monthly with shots. I have ulcerative coilitis, which hinders absorption of nutrients, so shots were recommended. Hard not to panic when balance and walking so hard.
In my experience; the diagnosis is normally based on the clinical symptoms and imaging techniques like MRI and DATSCAN. Though when neurologists are so confident about the diagnosis based on the clinical symptoms, they would not do MRI or DaTscan.
I take around 200mcg B12 ( 80% methylcobalamin and 20% adenosylcobalamin) Lozenge once or twice a week because I need it to convert homocysteine to methionine . I cannot say it makes me feel better but I know if I take more than the above amounts, I become rigid.
Thank u for responding. Hmmm. My dr wants to lower dose to once per month. Maybe I should. Other publications I've read say you take every other day until symptoms improve, which I have not done. My loading doses were weekly.
Unfortunately, negative Lyme test doesn't mean you don't have Lyme - it means it was not detected. If you were tested by ELISA, ask for C6 ELISA, which is more sensitive and Western Blot along with Anaplasma/Ehrlichia and Babesia testing, since these are the most commonly transmitted tick-borne infections. For Western Blot - IGeneX lab would be the best because it tests for 2 strains of borrelia vs. regular labs testing for 1 strain only.
Thank you for sharing this Lyme info as many people are not aware of the points that you made, and this includes some doctors, especially if they are located in an area where Lyme is not very common as they just don't get enough practical experience with Lyme.
You are welcome, Art. Unfortunately, most doctors are not interested in learning about Lyme as it is a vast subject. From what I understand there are approximately 100 strains of borrelia in the US and over 300 worldwide which will not test positive by ELISA and Western Blot which are only able to detect borrelia burgdoferi as far as I know. Then on top of this problem the accuracy of Western Blot is largely based on the expertise of the laboratory performing the test.
There are many other factors affecting reliability of Lyme testing and diagnosing, so after being informed by my neurologist about negative results by Western Blot (only 1 band out of 10 turned out positive) I found an LLD - Lyme literate doctor (who unfortunately didn't take insurance so I had to spend quite a bit of $$$) and was able to get tested by IGeneX for co-infections which turned out positive for Ehrlichia and Anaplasma - this confirmed the Lyme diagnosis.
Unfortunately, many people don't have LLDs in their area or may not have money to pay for their expertise and since Lyme can mimic a host of different diseases it is so much easier for doctors just to treat symptoms, especially that treatment of chronic Lyme can be even more complicated than its diagnosis.
hello irinaa well i went through that at the begining my doctor said i did not have pd..i told him i think i had as i went through the usual things m,r,i etc etc.so i went to see the neurologist..with in 15 mins he told me i had pd..he told me to put my hands out in front of me palms down..then he told me to wiggle the fingers of my left hand..it was normal,,then he told me to do the same with my right hand at the same time,,wiggle my fingers..my right hand could not do the same as my left hand.he then said i have pd,,i told this to my doctor who had no idea about that,so he knows in future what to look for.i hope this helps,regards.
i would say if they cant figure it out, that it could be some poison - pesticides, heavy metals- some toxin..... i went for years being sick (see my profile) and doctor after doctor didnt know what was wrong.
regardless of what if any diagnosis you receive, you're looking at overall healing of your being in terms of eating right, exercising relaxing etc. I would suggest trying yoga and meditation, and take it easy on The pharmaceuticals. Best wishes
Below is a link to a list of Fibromyalgia symptoms that are more specific to women. Not saying this is what you have, but I thought it might be helpful for you to go through this list and take notes of every symptom you have that applies to the list in case you forgot to mention some symptoms to us. Next visit to the doctor, present your new revised list of symptoms and this may help your doctor pinpoint and determine exactly what is the cause of your problems.
In the meantime it may be worth trying magnesium oil (MO) for some of your pain issues. Just spray it on and rub it in. Some of your symptoms match with magnesium deficiency as outlined in the second link below. On a related note, a magnesium blood test does not tell you what your bone and tissue magnesium levels are. Btw, MO has shown benefit for some fibromyalgia pain symptoms. Here is a link to the Fibro symptom page specific to women:
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