[Guest]

Hello,I am a 22 year old female. I have been to the doctor...in and out most of the year trying to figure out my problems - too many times to count. The latest one of my doctor's have said is possible ms and is ordering MRI of brain - scheduled for next wednesday. if anyone has had the same symptoms or if a doctor could give opinion that would help.

My problems started this year around February or March. The first thing I noticed is my big toe on right foot wasn't working as well as it should - I was trying to compensate and walk on the outside of my foot. This caused a lot of pain in foot and ended up sending me to first doctor appointment w/ ortho in late April. Doctor just thoughht plantar fascitis or something and told me to buy a special insert for shoe. I did - pain got worse, and in fact so bad i requested crutches and they gave me walking cast boot in May. I was sent to therapy and it did help a lot with bottom of foot but big toe weakness was still there. Ortho doc noticed big toe weakness so sent me to neuro. (I was having tingling and some numbness in foot and lower right leg)

When I saw nuero doc he did an exam and big toe was weak. Soon after he did EMG of right leg and MRI of lower backmid June suspected a slipped disc or something. (Early June I had a week of aweful low back pain - a burning type pain with extreme pressure) EMG showed abnormalities in muscle that lifts big toe and MRI showed mild bulged disk at L5- S1. So he thought it was all in back - sent me back to ortho for therapy.

When I saw ortho again in July or August I was now having more symptoms -tingling, pins and needles, crawling sensation, and itching in both legs. He thought more going on so he sent me back to neuro in August. A week or so after seeing ortho I began having a lot of new symptoms and they were now all over: tingling, pins and needles, crawling sensation, buzzing and heavy feeling in legs and left arm, muscle spasms everywhere that were like rippling and lasted a couple of seconds(both thighs, above knees, calves, left forearm), and twitches everywhere which was a quick sudden movement that did once to a couple of times( both feet, left big toe, left hand and thumb, both eyelids top and bottom -mostly right one, upper lip on right side, and chin). These twitches and spasms, weakness in r big toe and stiffness in low back were symptoms that stuck out the most. These twitches and spasms have occured everyday since I last saw nuero doc. They seemed to have lessened some but still occur many times a day in various places. Since I started havign all of these symptoms neuro doc wanted me to see neuromuscular specialist in another city. Still waiting on that.

In the meantime, another symptom popped up that actually sent me to er. About a month ago I was having shortness of breath, pain in upper chest and shoulder when breathing, and tighnbess in that same area. My heart was throbbing, and I knew something was wrong. So I first went to reg doctor. He did normal things and everythign looked ok but noticed shortness of breath when brething out. So he gave me brething treatment and did chest x-ray. He thought it was asthma due to all of my allergy problems. X-ray ok and sent me home with inhaler with medicine. Later that day felt the same and was conceren so went to er. They did all of these blood tests, heart montitoring,etc and everything was ok. They thought it was chest wall inflammation so gave me medicine. Medicine worked and few days was better.

Just about a week or so ago I turned over in bed and felt the exact same symptoms. Went to see reg doc again for medicine - He said could not be chest wall inflammation because when he pressed on chest it did not hurt. I told him of other weird symptoms and he said possible ms and is sending me for MRI of brain next wed.

Since then I have looked up on internet about symptoms of various things and ms. And I was shocked to see how many on the ms list I had. Some symptoms I did not pay attention too but when put together on a list it clicked. I have also had trouble with hearing too loud sometimes and I'm constantly asking people to turn down tv or music, I had problems with short term memory and concentration, trouble thinking of words and remebering what I wanted to say when trying to explain something,etc. Does anyone else have any of these symptoms?

[Guest]

Hi there: You are not alone in wondering what is wrong with you while having all those weird symptoms. I too have had all the tests, MRI, EMG to arm and leg, EEG, which all have come back normal. Yet, I still can't walk right, keep wandering to the right, and the sole of my left foot is so sore, I shift all my weight to the right leg. I think both my GP and neurologist have concluded that I am depressed and imagining or making too much of these symptoms. However, who wouldn't be depressed trying to cope with chronic pain and weakness for over a year and not know why, or how they can fight it. At least if you have cancer or have been in an accident, people can see or relate to your illness and symptoms.

I also experience the unnatural reaction to bright lights, sudden or loud noises, sudden movements and have involuntary twitches to my body. I have hyper reflexes in my knees and I sometimes slur my speech or repeat words or cant' get the word out that I want to say, all very frustrating to me. My hands go numb and the ends of my fingers and toes are affected with sharp stabbing pains. The pain is worse at night and that means you don't get your proper rest. Like you as well, I have a history of allergies. I also had Bell's Palsy and have a history of neuralgia like pain in my back and arms. It is so frustrating not knowing what is wrong and wondering why your body is like this and what will happen in the future.

So, please hang in there and hopefully somebody will finally clue in to what is the problem. I think there is a relationship between allergies and immune related disorders but nobody in the medical field seems to want to bother listening. For all the people out there who suffer from an unknown disorder, I send you encouragement and prayers that you will find a cure.

The Canadian.
[quote] Hello,I am a 22 year old female. I have been to the doctor... [/quote]

[Guest]

Hi there: You are not alone in wondering what is wrong with you while having all those weird symptoms. I too have had all the tests, MRI, EMG to arm and leg, EEG, which all have come back normal. Yet, I still can't walk right, keep wandering to the right, and the sole of my left foot is so sore, I shift all my weight to the right leg. I think both my GP and neurologist have concluded that I am depressed and imagining or making too much of these symptoms. However, who wouldn't be depressed trying to cope with chronic pain and weakness for over a year and not know why, or how they can fight it. At least if you have cancer or have been in an accident, people can see or relate to your illness and symptoms.

I also experience the unnatural reaction to bright lights, sudden or loud noises, sudden movements and have involuntary twitches to my body. I have hyper reflexes in my knees and I sometimes slur my speech or repeat words or cant' get the word out that I want to say, all very frustrating to me. My hands go numb and the ends of my fingers and toes are affected with sharp stabbing pains. The pain is worse at night and that means you don't get your proper rest. Like you as well, I have a history of allergies. I also had Bell's Palsy and have a history of neuralgia like pain in my back and arms. It is so frustrating not knowing what is wrong and wondering why your body is like this and what will happen in the future.

So, please hang in there and hopefully somebody will finally clue in to what is the problem. I think there is a relationship between allergies and immune related disorders but nobody in the medical field seems to want to bother listening. For all the people out there who suffer from an unknown disorder, I send you encouragement and prayers that you will find a cure.

The Canadian.
[quote] Hello,I am a 22 year old female. I have been to the doctor... [/quote]

[Guest]

Itis beri beri. The vitamin B1 is ineffective. Here's how I help myself: First I follow a diet of no alcohol(cider, apple juice, liquorice is included), caffiene, sugar substitudes, or cauliflower. A low diet (low doesn't mean no) of sweets, spices, salt, calcium, and protein. If I went over I eat an apple or two to counter-act the effects.
Second I sleep like a soldier at attention face up or to the right, never to the left with the elbows and knees straight.
Third I do my best to identify and stay away from all my addictions I'm aware of. I've joined twelve step fellowships to teach me to identify my resentments and get rid of them. I'm trying to start a twelve step fellowship for chronic illness-yet no one is interested.
I hope this helps you. It has helped me.
[quote] Hi there: You are not alone in wondering what is wrong with you while having all those weird symptoms. I too have had all the tests, MRI, EMG to arm and leg, EEG, which all have come back normal... [/quote]

[Guest]

Hi, my name is Melissa I'm 30yrs old and have some of your symptoms over 2 years. I always follow up with my neurologist every 6mths to everyhing is normal. I was wandering what was the diagnose?? All I could tell you is to have faith in God, he is the only one who has kept me with a staple life. I have two daughters and pray and believe that one of these day all of these symptoms will go away in his time not in our time.

Please get back to me.

God bless, Hang on
[quote] Hello,I am a 22 year old female. I have been to the doctor... [/quote]

[Guest]

Hi Melissa:
I just typed in a long reply and then lost it, darn. However, I wanted to thank you for your reply and for your kind words. The website address below may help you and others to find out if your problems may be related to a heriditary pressure palsy type of ailment. It is very well laid out and deserves a look.
http://www.hnpp.org/

The reason I browsed through it extensively is that my younger brother is having similar problems with his left leg and foot as I am. He had to wear an AFO splint and the neurologist suspects he may have this disorder, which is similar to CMT, Charcot Marie Tooth. I went to a orthodotics office yesterday and found out that the arch on my left foot is quite a bit higher than my right one. The left foot is where all my problems started with foot drop and excessive pain on the sole of my foot, which can either be numb and cold or hot stabbing pains. He also noticed that I was down on my right side. I have never been able to walk right since the foot drop and listed or swayed to the right. That happened in the fall of 2001 so I guess my right side has overcompensated trying to bear most of my body weight since I couldn't put my weight on my left sole because of the pain. He asked me if my doctors had examined my feet and I said no. The doctors today rely on medical tests and X-rays to confirm a diagnosis. If nothing shows up you are out of luck as in most cases it is presumed that you are either neurotic or looking for attention. How many people out there are going through Hell, trying to cope with these pains, weakness, and mobility problems and have no explanation as to why they are like this. Too bad somebody wouldn't start a website for people suffering from undiagnosed conditions and offer a place for people to share their symptoms and post any new updates or things that have helped them out.

I am not bashing doctors, they are usually overworked with a large caseload. However, we live in these bodies and we know what it was like to be normal and healthy. You know what chronic pain is and realize you have limitations to what you can do from now on. A person can fight something a lot easier if they know what it is. I went to a chronic pain group and although the people were all suffering they knew the cause whether it was from an accident, fibromyaliga, arthritis, etc. I also went for pool therapy for three months and it was the same thing, "what are you here for ?" and you have to say you don't know, except you can't walk right anymore, you stutter and stammer for no reason and your nervous system is gone haywire.

The approach I have assumed is to take one day at a time, reach out to support groups, go on line to keep informed and to pray that research finds a reason for this. Even if it turned out that it was MS (maybe that will take 4 years or more) at least then a person could receive the proper medication to help with the symptoms.

Pain is a warning sign something is wrong and how many of us have more than our share of pain. Somedays I shuffle down the hall like an old man with Parkinsons but don't know why. However, I am grateful that I had 50 years of good health before this hit. My heart goes out to the many hundreds and thousands of young people whose lives are afflicted with an unknown illness. Maybe out of suffering, good things will emerge. I can only pray that will be the case and we all have to have hope.

God Bless,
The Canadian
[quote] Hi, my name is Melissa I'm 30yrs old and have some of your symptoms over 2 years. I always follow up with my neurologist every 6mths to everyhing is normal... [/quote]

[Guest]

To the Canadian, This is what we are doing here. I sent in a 28 page report to the doctors explain the physical illnes you are experiencing part of and the pyschological post tramatic stress they cause when they send you to the mental health clinic so they feel they are doing something while they really are ignoring you. As a result they stopped answering questions here so they can listen and learn from us without having to admit they could have been wrong and not make the same mistakes again.
At my local hospital they are now asking what else you are using as medication besides the prescribed drugs so they can better treat you. I take 100mg of vitamin B1 four times a day (if I remember) to prevent my muscles from twitching. The last time I saw my doctor I told him I hadn't heard from any of them as yet because I felt like I finished a final for a course I'd been taking for years. His answer was "not yet." That was a first-he's waiting with me. I have his support. Now we have to get the system's support and they're listening to us here is helping that process. This way no one is under pressure.
There are groups through the American self-help clearing house listed for people with undiagnosed conditions. It is my hope they will soon formally start diagnosing because there will be a recovery program in place we can start. I showed them how to do this too because I not only needed to know what was wrong I needed to know how to get better so I would not die or feel like any moment I could die from bureaucracy.

[quote] Hi Melissa:
I just typed in a long reply and then lost it, darn. However, I wanted to thank you for your reply and for your kind words... [/quote]

[Guest]

To the Canadian, After I wrote the last entry I looked up the website you mentioned, www.hnpp.org/. I have some of those symptoms also among others. Through trial and error I've figured out how to take care of them.
I've noticed that if I get emotionally upset circulation decreases in my arms-especially the left arm. I found I have to share with someone (that won't cause more stress) what is bothering me so I can learn to change. Then I drink orange juice for the pottassium and sleep like a soldier at attention with elbows and knees straight, either face up or to the right.
This is for the immediate problem. There's a long term solution-one day at a time I will go into if asked. The support group needed is a twelve step program. Most people don't want real help-they are looking for a Mr. Fix-it. There isn't any. It works by "If there is no we there is no me."
That's enough for one night. If you understand and have questions please ask.
[quote] Hi Melissa:
I just typed in a long reply and then lost it, darn. However, I wanted to thank you for your reply and for your kind words... [/quote]