Neurological symptoms of unknown cause - any help appreciated

[Maggie999]

I am a 34 yr old female who has been having neuro symptoms for approx 2-3 yrs.  Started with vague sensory problems and migraines & has progressed from there.  Symptoms can be severe at times, but generally come and go, although the sensory symptoms tend to be progressing and constant & the migraines seem to be getting more severe over time as well. I have a neurogenic hypotonic bladder (confirmed by urodynamic testing) & I self-cath right now only at night, but there have been times when I have gone into almost complete retention, & I do get infections no matter how careful I am.  I have lost almost complete use of my right hand several times - this usuallly responds to high dose solumedrol, but sometimes better than others.  I have had "numbness" in my left throat going down into my neck and shoulder which has resulted in difficulty swallowing and a loss of gag reflex (since returned).  Most recently I have a poss dystonia in my right foot, treated with little success with botox (we are going to try again with a higher dose & placement with EMG).  This dystonia has lasted now since February.  I am currently taking Neurontin 600mg tid, propranolol 40mg tid (for fast heartrate), baclofen 10mg tid, topamax 50mg bedtime and Maxalt for headaches.  I am hyperreflexive(ususlly worse on the right), have a left upgoing toe, and since this dystonia the right has been upgoing as well, have tremors.MRI of head with gad & c-spine neg (t-spine not done yet)lp, muscle biopsy, all blood work except thyroid antibodies &anticardiolipid neg. My neuro is stumped..any suggestions as to cause?

[CCF-Neuro-M.D.-JT]

If all of the symptoms have an organic basis (meaning they are all actual neurologic problems rather than just symptoms) then there are multiple areas within the nervous system involved here that cannot be localized to one particular area of the nervous system such as just the brain or nerve or spinal cord.  MS is certainly a possibility, alhtough it's surprising that everything's coming back negative.  Other neurodegenerative disorders which include movement disorders should be considered, especially with the history of dystonia.  Since you're young, Wilson's disease is a possibility (liver can't process copper resulting in neurologic, liver, and psychiatric manifestations). This can be evaluated with Blood and urine tests to look for copper accumulation.  More specialized testing to evaluate you for degenerative diseases such as PET scan or MR SPECT could be considered. But these should be done at an academic facility. If your doc is stumped, get a second opinion at a facility with an academic movement disorders program such as Columbia Presbyterian with Dr. Fahn's group in NY. Good luck.

[Andrea`s_mommy]

Hi Maggie,
Sorry to hear you`ve had so many problems. I`ve had unknown neurological problems too for 9 mos. now. They started after my baby`s birth. Mainly sensory symptoms and twitching though. Mine arn`t as quite as strong as yours; and I`m sorry yours are. These things can drive you nuts. I`ve had a lot of tests too, and so far they are normal. My problems started when I was under a lot of stress, you?

[Maggie999]

Just as a further note....I have also had evoked potentials done 2years ago when all this started and that was normal as well.  I understand the complicated nature of my problem, so I appreciate any help you can offer.  I live in Canada, so referral to a large US centre is unlikely. My neuro did refer me for a second opinion - he said either MS (I think unlikely at this point based on neg MRI & lp) or mitochondrial disease.

Thanks again

[justy]

Have you had an MRI of the brain and spine to rule out Chiari 1 Malformation? You can find out more about this disorder and it's symptoms at www.wacma.com

[eloridas]

Yeah Maggie--I agree with justy--but not just for CVM--didn't see you mention a head MRI anywhere.

[justy]

I'm sorry Maggie that I didn't see you had down that you had a head MRI. I had MRI's of the brain and Chiari wasn't found until I went to a well known neurosurgeon in Manhasset Long Island and had a special MRI called a cine MRI which proved that I had absolutely no csf flow at the back of my head. I had seen many Dr.'s previous to this and all said that I did not have Chiari.

[Mysterious Stranger]

Maggie, this is for you and the MANY others on this board who report variations of peripheral neuropathy and MS-like symptoms, especially the many who are frustrated that conventional medical testing and workups have left you without solutions, or even diagnoses.
     In people who report sensory and/or motor disturbances, tingling, numbness, and other unusual sensations in BOTH upper and lower extremities, and/or the face, the cause is most likely not a localized lesion, nerve root entrapment, or other focal problem.  These types of complaints smack of a systemic problem, one attacking the body's entire nervous system and possibly the cardiovascular system as well.  Environmental exposures, namely chemicals should be suspected, especially when there is a history of such exposures.
      For at least some of you folks with these types of symptoms, I would strongly suggest you ask yourself whether you consume aspartame in your food.  I would bet that many of you use diet products, especially "sugar-free" lines of products containing the now ubiquitous aspartame artificial sweetener (sold as "Equal" and "Nutrasweet").  The two amino acids making up 90 percent of aspartame are neurotoxins/excitotoxins in large enough doses, which themselves can cause problems with the nervous system.  But the most harmful constituent of aspartame may be the 10 percent of the product that binds the two amino acids together -- methanol (wood alcohol).  That substance breaks down in the body into first formaldehyde (used in embalming) and then formic acid (the poison in ant stings).
     Methanol is a powerful neurotoxin, one that may slowly be pickling your nervous system.  The damage may be permanent, but you can at least halt the progression of methanol poisoning by halting your intake of the poison.  There are, on the other hand, many instances of people having improvement in their symptoms upon eliminating aspartame from their diets.
     I certainly understand anyone being skeptical that aspartame is the cause of their problems, but there is an easy way to prove this suggestion wrong.  Simply eliminate ALL aspartame from your diet for 60 days, and see if your symptoms improve.  If you need artificial sweeteners in your life, there are at least four or five others that are available.
      Many of you have expressed great frustration at the inability of the medical profession to even identify the cause of your problems, let alone treat your illnesses.  What do you have to lose by trying my suggestion?

[LMar6282]

I completley agree with you.  I also have been having these strange neurological symptom.  Because they started around the same time I moved into a new house, I went to see an environmental MD in Charleston and he thinks it was caused by all the chemicals(toxins and pesticides) floating around my newly constructed house.  Possibly from the formaldehyde in the carpet or particle board in the house.  I'm trying supplements and B12 to try to help relieve/cure the symptoms.  

Any suggestions?

[rottieloo]

I too, experience strange neurological symptoms.  Mainly at night.  Like my body is moving/tingling and itcontinously wakes me.  I have severe neck problems.  I have had an extensive neurological exam (MRI, CATs, SSEP, EMG, EEG..) all which are normal.  I am at my wits end.  Everyone says neck problems  but yet I feel no pain just odd sensatiosn.  Driving me crazy.  tingling throughout my body, etc.  Can any body relate?

[Mysterious Stranger]

rottieloo, your symptoms seem more localized than maggie's, but you apparently have had testing done to rule out nerve root impingement, lesions and other focal problems explaining your symptoms.  Just out of curiosity, do you drink diet sodas and consume any of the ubiquitous products artifically sweetened with Nutrasweet, Equal  or their generic aspartame?  Seriously, can you tell us the extent to which you have used aspartame in recent years?

[ceba]

I used to have grand mal seizures and in the last few years, I have been having twitching in my face (cheeks) and my eyes, and feel like my eyes are moving back and forth, as well as breathing deeply.  These occur only in my sleep.  I have not had aspartame since a grand mal seizure in 1985 and I have had an MRI, MRA, video EEG monitoring, a blood workup, and everything is normal.  I took Tegretol for a year and was fine, but had to come off of it due to it exacerbating my lupus condition. (I don't take medication for the lupus and am symptom free except for blood antibodies) I am off all seizure meds right now, for the past month, and don't really know what to do.  One neurologist says I am having a sleep disorder, but an apnea test 2 years ago was negative, and I don't fit into the categories of sleep disorders I have read about.  These events only occur when I am sleeping or napping, and can happen all night long.  They happen every night and wake me up. If there is anyone with a similar situation or any ideas, I would greatly appreciate any information or suggestions, no matter how bizarre.  Thank you.

[kim4]

Mysterious Stranger:
Do you feel that Sweet-n-Low will cause the same problems as Nutrasweet and Equal??

[Mysterious Stranger]

No.  "Sweet-and-Low" is saccharin.  None of the ingredients in aspartame is found in saccharin.  I don't care much for the taste, however.  I prefer Splenda (sucralose) for taste, but there may eventually be health concerns about it as well.  Sucralose is sucrose that has been "chorinated."

[LITTLEWING]

I HAVE BEEN USING SPLENDA FOR ABOUT 8 MONTHS.  WITHING THE LAST TWO MONTHS I HAVE BEEN EXPERIENCING SEVER MIGRAINE HEADACHS, STABBING PAINS IN MY HEAD, A TREMBLING PINKY FINGER, PRESURE IN MY EARS, SWOLLEN GLANDS AND SOME ABDOMINAL PAIN.  I HAVE NOT SEEN A DOCTOR FOR ANY OF THIS BUT SOME HOW FEEL IT MAY BE RELATED TO MY ARTIFICAL SWEETNER INTAKE.

[Mysterious Stranger]

Possibly, but there isn't much of a negative track record for Splenda (sucralose) the way there is for aspartame.  Splenda's artificial sweetener is a "cholorinated" sugar that is inert in terms of how the body metabolizes it.  Sucrose (table sugar) is a disaccharide composed of two basic naturally-occurring simple sugars, glucose and fructose.  When sucralose is made, three of the OH (hydroxyl) radicals are removed and replaced with chlorine atoms.
    Proponents of sucralose's safety point to the fact there are chorine atoms in many "harmless" substances (salt being the most obvious).  Opponents point out chlorine is a component of solvents and other substances that have very toxic and cancer-causing properties.  Pay your money and take your chances.  If you can associate your symptoms with sucralose use, then obviously abstaining from using it makes sense.  There have been few clinical studies of sucralose, so you have to decide without the benefit of much research whether the product is safer.  For me, it makes more sense to use sucaralose (assuming you have no symptoms) than it does aspartame, which contains known neurotoxins and excitotoxins.  Ten percent of aspartame is methanol (wood alcohol), a poison.  The body is capable of "neutralizing" poisons like methanol (and many others) contained in foods naturally (like orange juice) with glutathione and similar substances the body makes, but the body can only handle so much of the poison.  Methanol breaks down into formic acid (ant sting poison) and formaldehyde (embalming fluid) and is retained in body tissue if not "neutralized."  Most people consume a lot methanol these days because of the proliferation of aspartame-containing products on the market.
     For people who have systemic symptoms like numbness and tingling in both hands and feet (and/or the face), which cannot be explained because MS and similar diseases have been ruled out, a simple experiment of completely abstaining from asparatame consumption makes sense.  What do you have to lose?  You may be surprised.  But it may take 60 days of abstaining from using the stuff to see any improvement as the body can store the methanol byproducts for some time.

[rottieloo]

Hey Mysterious Stranger.  Yes, I have heard that about artificial sweetener.  I have completely eliminated it from my diet and things have gotten better.  I am also trying to reduce sugar (white rice, bread, etc.).  I am still experiencing nightime strange sensations in my legs and arms (mostly thigh area) and some weird BP, pulse sensations.  Do you have any more suggestions for me.  It is driving me crazy.  Can you get better from the damage from that stuff?

[Mysterious Stranger]

rottieloo, you said "I have completely eliminated it from my diet and things have gotten better," referring to the aspartame, I gather.  Please give details.  Were you a frequent consumer of aspartame-containing drinks or foods?  If so, what types of products and how much did you consume a day?  How long has it been since you DISCONTINUED usage of those products?  Info will be appreciated.

[Freddd]

Sublingual Methylcobalamine has brought me back from the edge of death.  I have suffered repeated crises' of severe congestion with sticky jellied mucous, bilateral neuropathies all over my body, extreme abnormal fatigue, beef red sore cracked toungue, lifelong depression, vomiting for days, IBS, FMS, etc.  In ONE HOUR after putting a 1mg methylcobalamin under my tongue the severe abnormal fatigue was GONE.  The lifelong depression was GONE.  My tongue is getting better each day.

I had 30 or 40 symtoms that are on the list for B12 deficiency except for the anemia, prevented by cyanocobalamin and folic acid in my usual supplements.  The cyanocobalamin is not active for many and it's presence can fool the tests.  I am about 6 weeks after starting methylcobalmin daily and I'm actually happy and feel pretty good.  This has turned my whole life around.  My 3 children all have a night and day response to methylb12.  80% of the people I know that have tried it have an immediate (often within 0.25-24 hours) profound effect.  This problem is far more common than I would have imagined 2 months ago.