Hello Everyone,

My name is Marc and I'm a 44-year-old married father of two beautiful girls. My journey to this forum has taken six months. I will try to be brief but I would like to outline my symptoms because I'm still in the process of being diagnosed. In October of last year I was on a business trip in California when I suddenly noticed I had some hearing issues in my right ear. I noticed a year prior that I had some ringing in my ears which had gone away but this time there was more distortion and it would not stop. I went to many doctors and after month I was diagnosed at Yale University with Ménière's Disease. I had a couple of the symptoms of Ménière's but did not have vertigo which is a key component of this ailment. Over the next few months I started to have new symptoms. I began to notice that my hands and feet would get cold and tingly, I would get muscle fasciculations constantly, I lost my sense of smell, I noticed a lack of dexterity in my hands and both my hands legs and trunk would shake when used. At this point I had the suspicion that I was dealing with something more neurological so I made an appointment with a neurologist in Connecticut where I live and he scheduled an MRI. The MRI came back negative and the neurologist chalked all my symptoms up to anxiety. An anxiety diagnoses didn't sit well with me so I made an appointment through a friend of mine to go to a top neurologist at Columbia University in New York City. After sitting down with my new neurologist she took an hour and a half of notes and talked with me about all of my symptoms. She felt it was important to do a lumbar puncture and schedule that which I had last week. The lumbar puncture came back normal except for a high protein level of 54. I met with my neurologist again today to review the lumbar puncture results and she said that it is time for her to refer me to another doctor. The Dr. she referred me to is Louis H Weimer M.D. All his information is below

Louis H. Weimer, MD
Clinical Professor of Neurology
Director, EMG Laboratory
Director, Clinical Autonomic Laboratory
Co-director, Columbia Neuropathy Research Center
Neuromuscular Division

Hindsight being 20/20 I probably had symptoms for last few years. My main question right now is what could this be? What is my future? How this impact my family? Obviously like so many people on this board I'm scared and would like some help and some reassurance.

Thanks for listening!

Marc

Hello from Sydney Australia. I'm sorry to hear about your symptoms, it must seem like a big puzzle seeing so many doctors. I am not sure what you have,but it does sound neurological. You say that looking back you have had symptoms for years, remembering your initial symptoms and what was going on in your life from both a medical and a lifestyle perspective is actually important. You seem to be on the right path and seeing good doctors who have the sense to refer you onwards to specialists instead of chalking your symptoms down to 'anxiety' which is a major cop out. Keep copies of all your labs and results of all your testing when you go see the neuropathy specialist.

As far as what the future holds, in my time on this forum alot of people seem to have improved over time and moved forward with their lives. You should also expect to get better too. It just takes time to sort all this out. Wondering about the future when something like this happens is normal, but remember even perfectly healthy people dont know what the future holds or if they will be sick in some future date.
What I have learned is that pain symptoms must be managed, and excessive worrying will makes all medical issues worse.

Aussie

PS. Take a look at the stickies on top of board, there is a lot of good information there.

Has Parkinson's disease been ruled out? My mother had Parkinson's and she lost sense of smell years before other symptoms showed up.

Welcome to NeuroTalk, Marc.

I agree with January... loss of smell is a cardinal symptom of
Parkinson's. So is the tremor you have.

However, low nutrient status can cause that too. Low zinc will result in lost of taste and smell.

If you have malabsorption in the GI tract from gluten intolerance, zinc and other nutrients will be low.

If you take acid blocking drugs regularly for heartburn, you can get low in zinc, magnesium, calcium, B12, folic acid, and iron, and some trace minerals.

I would ask the doctors to do a B12 test and Vit D. These are the most common nutrients lost by people, and will upset the nerves and give alarming symptoms. Get your test results in numbers and don't accept "normal" comments from your doctor.
Lab ranges in US are still very low and outdated.
We have a B12 thread here:
http://neurotalk.psychcentral.com/thread85103.html
If you have trouble standing upright with your eyes closed, that is called Romberg's sign and points to low B12.

Before getting upset and worrying, try to cover these more common bases.

For your muscle twitches, a soak in epsom salts (which provide magnesium) can help. If it does, then oral supplements should be done, because up to 70% of Americans are low in magnesium. SlowMag is one good form to use twice a day.
It is available easily at WalMart. Products with magnesium OXIDE do not work, so avoid those, as they are very common still.

This is our Parkinson's forum. You can post there and ask questions. PD is now showing up more often in younger patients.
http://neurotalk.psychcentral.com/forum34.html

I cannot address the others issues,but the weakness in your arms does sound familiar. I had a flare up of extreme and debilitating weakness in my hands and arms before I was diagnosed with hereditary neuropathy. It was later found to be caused by pinched nerves which seem to accompany my condition, and the weakness comes and goes. Right now I am having difficulty straightening my elbows, particularly the right, and have more pins and needles and weakness than usual in my hands and arms. All this to say, it may improve as mine did from the first flare six years ago.

On another note, any ideas, Mrs. D., on why Parkinson's seems to be showing up in younger people? It seems more prevalent too.

I read the PD forum quite a bit (and not just because I am a moderator )

There are some very intelligent, informed people there who post lots of scientific studies about the blood brain barrier, genes, mitochondrial damage, toxins, statins, you name it. There is a gene called the Parkin gene.

They do mention young onset PD... Micheal J. Fox has this type.

But like most neurological problems, there is not one answer for all PD patients.

We are seeing younger patients and many of them male on Myasthenia gravis forum (+50 used to be the stated onset for MG in males), and here, we see more young people every day.

I think vaccines may play a part. Diet, and toxins, too. At least here we do see RX drugs as triggers fairly often.
They may combine, and be synergistic. And the triggers may only work in certain genetic combinations with people who have a weakness of some type.

More and more people are deficient in certain nutrients due to RX drug depletions, or poor diet. 40% B12, 70% magnesium,
70% low Vit D, are recent discoveries. B12 and minerals are affected greatly by the acid blocking drug use OTC and RX.

So understanding how our bodies work, and how to take care of them, is a major educational point of view at least for me to provide here. And it seems I say the same stuff over and over and over!

Hi Marc, I'm new and scared too. I can understand especially with your family to support. I hope you feel better. One things seems for sure that if all of these doctors did not find something terribly wrong with you quickly, then there's a chance it will be alright. Hoping the best for you!

PS Chaulking it up to 'anxiety' does seem ridiculous and a little condescending, to me, I will say.