Suggestions anyone?

Hi, I'm new here :) i also posted this in neurology, but perhaps this forum brings helpful information as well!

Hello and thank you for taking the time to read my questions.

I'm a 42 yrs old female. 1 Year ago i had (still have) a dropfoot, i had lots of pain on the lateral part of my lower leg so i was prescribed Gabapentine (Neurontin, 1800 mg/day). It helped a lot for the pain. But now it comes: over the year that followed i developed severe muscle weakness in my right lower leg and since 3 months same for the left hand. I can't stretch my fingers, only the thumb is kind of normal. I can't walk without a walker anymore and i walk very slow, my foot turns to the inside and i stumble a lot. Since a few months i also experience mild weakness in my left lower leg. And strange tingling in my calf.

For the drop foot i was examined with EMG, MRI (back, hip, upper and lower leg), bloodwork was done, as well as a lumbal. The MRI's all came back normal. The EMG showed conduction block at the knee of the n. peroneus, but nothing was found on the MRI. Bloodwork showed a higher BSE and the platelets were too small.

They sent me to a specialised clinic where i got an EMG of the lower legs and both arms. In the legs they found nothing! For the left arm they found a block a little bit above the ellbow and signs of carpal tunnel syndrom (syndrome). So an MRI was made of my left upper arm. Again nothing was found, the bloodwork came back normal. So the docters can't explain my condition, they are convinced there is something wrong, it is not a psychological issue, but they don't know... this does happen to 15 out of 100.000 patients i was told.

Any suggestion would be welcome, symptoms: muscle weaknes in both legs, left hand and lower arm, nerval pains (burning!), severe fatique, not able to stretch finger (only the thumb), not able to stretch foot/toes, not able to stand on my heel or toes, need a walker. The symptoms onset were acute starting with dropfoot. They seem to be progressive. They get worse when i exercise too much and become a little better after periods of rest.

And a question regarding Neurontin: it can influence reflexes, so for example if your reflexes are weaker and Neurontin makes them stronger could this show normal reflexes  on a neuro exam? Same idea for the emg, as neurontin influences the neurotransmitters! Has this ever been part of a clinical trial? And same for the bloodwork: neurontin can lower the leukocytes so, if you have a higher BSE and Neurontin lowers the leuko's, could this result in a "normal" outcome of the BSE level in the blood. In other words: you get a false outcome...

Do you think a biopt of nerve tissue would make any sense? They haven't done this yet.

I'm desperate, i don't know what i have, don't know what the future will be, docters just don't know. How can this be. I'm scared more muscle groups will start getting weaker. Any suggestion is more then welcome. Thanks a lot for reading and have a wonderful day!

Anja

[dutchflower]

I forgot one very important symptom: severe weightloss! (over 25 kilograms in 1 year)

[Red_Star]

Vitamin B12 is essential to maintain the myelin shealth around the nerves.
Symptoms of vitamin B12 deficiency are numerous but include affected nervous system [pain, numbness, tingling, weak muscles...], fatigue and weight loss.  You mention your platelets are smaller than normal and MPV [mean platelet volume] is lower than predicted when thrombocytopenia is caused by megablastic anaemia or bone marrow failure.

Megaloblastic anemia is usually caused by a deficiency of folic acid or vitamin B12. This is one possibility to check out. Simple B12 replacement may be the simple answer. It takes up to a year to repair the myelin shealth but nerve damage may be permanent if not treated in time with B12.

"Why is B12 deficiency so under-diagnosed?

B12 deficiency is often missed for two reasons. First, it’s not routinely tested by most physicians. Second, the low end of the laboratory reference range is too low. This is why most studies underestimate true levels of deficiency. Many B12 deficient people have so-called “normal” levels of B12.

Yet it is well-established in the scientific literature that people with B12 levels between 200 pg/mL and 350 pg/mL – levels considered “normal” in the U.S. – have clear B12 deficiency symptoms. Experts who specialize in the diagnosis and treatment of B12 deficiency, like Sally Pacholok R.N. and Jeffery Stewart D.O., suggest treating all patients that are symptomatic and have B12 levels less than 450 pg/mL. They also recommend treating patients with normal B12, but elevated urinary methylmalonic acid (MMA), homocysteine and/or holotranscobalamin (other markers of B12 deficiency).

In Japan and Europe, the lower limit for B12 is between 500-550 pg/mL, the level associated with psychological and behavioral manifestations such as cognitive decline, dementia and memory loss. Some experts have speculated that the acceptance of higher levels as normal in Japan and the willingness to treat levels considered “normal” in the U.S. explain the low rates of Alzheimer’s and dementia in that country."

Excerpt from the article: "B12 deficiency: a silent epidemic with serious consequences" by Chris Kresser.

A book on the subject: "Could It Be B12? An Epidemic of Misdiagnoses, Second Edition" Author: Sally M. Pacholok, R.N., B.S.N., and Jeffrey J. Stuart, D.O.

[Ricobord]

Because neurological tests aren't showing anything so far, you might ask to be tested for Borreliosis.  In Europe, it is more likely to cause neurological problems (and to mimic MS) than the joint problems seen in North America.  Muscle weakness, numbness, tingling, loss of appetite, weight loss, and fatigue are all consistent with it.

It frequently causes low magnesium and low B12, which can cause or worsen symptoms.  Supplementing both can help with the neuro and muscle issues as well as the fatigue.  Epsom salt baths are an efficient method of getting more magnesium into the tissues.  Methyl-B12 shots can noticeably improve the fatigue.  

You might check out lymeneteurope.org for more info.

[dutchflower]

Hi Ricobord,

I was "bitten"(is that the correct word?) by a tick about 5 years ago, i removed it myself, there was a red round spot but i thought it was due to the bite or so (i have a sensitive skin, same happens when ai have a mosquito bite!) but it didn't go away. A few weeks later i saw my family docter because i had bronchitis. I showed him the spot and told about the tick bite. He told me it wasn't anything serious, i shouldn't worry about it, the spot would go away and so i felt relieved! He was right, the spot did go away, so did the bronchitis after many weeks! I got anti biotics but i have intolerance of most antibiotics, i had diarrhea and my tongue was almost black!

I was tested for lyme disease this year and results were negative. But I do recognise what you describe and i was bitten by a tick, but this was 5 yrs ago and i had no previous symptoms!

Could i still be suffering from Borreliosis and can Borreliosis cause these severe symptoms even after such long time and with negative results on blood tests? And if so what should i do?

I will check the website, thank you!

Anja

[dutchflower]

Hi Red_Star,

Thank you! My B12 levels were tested and the outcome was normal. I do take vitamine B complex including B12 everyday. I don't know how to get more B12 into my system! Do you have any suggestions? If this causes my condition i want help asap of course and not read books hehehehe ;-) So what could i tell my neurologist about this to convince him to give it a try?

I appreciate your input, thanks a lot!

Anja

[dutchflower]

One quick question, i just went to the website and got to the articles written by Tom Grier, who is he, is he a docter? Or medical professional? I'm doing my best to read, but i have low energy and concentration stuff :( this is because of neurontin, i need neurontin because of the terrible pains, so i don't mind this side effect :)

[Red_Star]

HI again, well it is a possibility as i said.  If you do have malabsorption issues with B12, a B complex including B12 isn't going to be of much help as the dosage would likely not be high enough.  I personally use sublingual (under the tongue) spray which is extremely effective. I have autoimmune pernicious anaemia so i know. :)

Delivery System   /  Rate of Absorption*
Pill or tablet – 10%
Capsule – 20%
Gel Cap – 30%
Transdermal Patch – 45%
Sublingual Liquid – 50%
Intramuscular Injection – 90%
Intraoral or Sublingual Spray – 95%
Intravenous Injection – 100%

*Source: Physicians’ Desk Reference, NPPDR No. 18:676, 1997

[dutchflower]

Hi RS,

I had no clue about the absorption of B vitamines, that's shocking! Is your docter subscribing you this sublingual spray? I might ask my family docter to give me a B12 injection to see if this makes a change! It won't hurt me ;-)

[Red_Star]

Vitamin B12 is the hardest of all nutrients to absorb due to the many steps involved in the digestive tract. Of course you many not have malabsorption problems but if you do the B12 in the B complex isn't likely to be in a high enough dosage to bypass this problem.  Due to issues with B12 absorption, you will find B12 commonly sold in sublingual form such as tablets, lozengers or sprays.  I buy my sublingual spray from my local pharmacy. Can't hurt indeed...well if you have an injection it might. :P