I'm a 27 year old white male with something strange going on with me.
Back in February, I was having sensation on the left top of my head that worsened to sharp pains if I was tense or stressed. I went to see a nuerologist, and he ordered a brain MRI. I also started seeing a chiropractor, and that really helped the sensation and pain.
But then the MRI came back showing 6 very small T2 weighted hyperintensities in the white matter on the left side of my head. Well, needless to say, it really upset me. Over the course of the past 6 months, I've had various other symptoms like:
-Minor facial numbness on left side that comes and goes
-Minor tingling in left hand (had that twice now, for about 3 days each time)
-Odd sensation in lower left leg that has progressed from twitching to just a constant fatigued feeling
-Overall fatigue that just seems to never go away
-Periodic extreme tired left eye
-Sometimes I just feel like I'm in a fog - feel like I'm not as sharp as normal
-Headaches/pains towards the front of my face. They aren't constant - almost seem like they're positional.
-Can't sleep well - wake up lots at night time
-I seem to sigh a lot - not sure how else to describe it, I take deep breaths all the time
-Minor muscle twitches in my lower left leg on and off - primarily only when I'm sitting down.
-Eventual pain in lower left leg if I sit for a really long time.
-Stiff hands in the morning that get better throughout the day.
Now, I've had about every test done that I know of.
-Second brain MRI (no change),
-Lumbar puncture (negative for MS)
-Spinal MRI (nothing other than minor degeneration where I had a vertebrae out of whack)
-Blood work (nothing wrong there, checked Thyroid)
-EEG on left leg and left arm/hand (diagnosed with minor carpal tunnel in left hand - I do type all day long)
-Eye test (astigmatism in left eye)
And I'm left with no real answer. My nuerologist only said it's not MS, nor is he concerned about any other major degenerative disease. But I haven't felt my normal self for 7 months now, and I'm very frustrated. I'm normally a very active person, working out 5 days a week - now, I'm down to 2 if I'm lucky due to being tired all the time. My regular doctor diagnosed me with minor/moderate depression and anxiety two weeks ago and started me on Lexapro (I think that's the name). I hate being on medication - I don't like to even take Advil or Tylenol. That's helped with the anxiety a little - I don't feel like I'm getting worked up as much.
So what am I to do? I've been searching for a long time looking for an answer, and I just can't. I have been stressing myself out drastically worrying about my health, not for me so much, but for my wife and 5 month old son. I want to be there for them, and don't want to have something that will debilitate me or shorten my life.
Geesh, this is long. Sorry, but in a way, it helps to write it all out. The short of it is, I want to know what I'm dealing with. Should I be concerned about ALS at all? Anyone out there have any advice?
I too have been having weird symptoms. It seems like it all started in my voice. Then episodes of shortness of breath. Then the speech got tight when I would talk. Then incredible back pain that I had to quit my job. Then a tremor. Then spasms in my esophagus spinchter and lower spinchter muscles. Now they are stiff. When I eat, I have to bear down to burp. Then I got sensitive to MSG. Now I can't eat pizza or bread. If I do, I get short of breath. I am short of breath every morning then it subsides. I have no weakness in my arms or legs. I have a lot of twitching in my upper torso region, face, lips, lot of saliva in my mouth, and when I see the ALS specialist, he says I don't know. He says I have no stiffness in my tongue, I can still talk, and my pulmonary tests at rest are good so they don't know. But I know, something is not right. I cant' do all the things I used to do, I get short of breath running up a set of stairs. I am extremely depressed. I take Klonopin for the spasms so my muscles don't fasciculate when I'm at the doctor. I tell them see me at night when they do or early morning. I can't stand the shortness of breath in the early morning. It subsides as the day goes on but gets worse in the early evening again. Then the bronchospasms get worse too on some days worse then others. I am so frustrated. I want to go to another state and start all over with doctors. I am just so depressed. Anybody have any similar storeis?
Hi bobcat_grad. I am sorry you have so much going on. I know it is frustrating trying to find out what is wrong.
I suggest you consider Lyme disease as a possibilty. Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. It can cause many symptoms, including those you describe. Besides Lyme, ticks can transmit several co-infections. Many people who have Lyme are co-infected. Often, people are bitten by ticks without knowing it because they are very small and you cannot feel them on you.
Lyme and tickborne infections can be difficult to diagnose. No test is completely reliable so it is crucial to see a Lyme knowledgeable doctor. If you would like me to recommend one closest to you, just post which state you are located in.
For more information on Lyme and tickborne illnesses, read the "Lyme Disease Information" post on the Lyme disease board at this site. Don't give up, you will find out what is wrong.
Thanks. The irony of your sreen name wasn't lost on me.
I'll talk to my nuerologist about Lyme disease - I'm seeing him tomorrow. But I thought Lyme Disease also had that bulls-eye rash thing. I didn't have that - not to mention that my symptoms started in the middle of last winter (February or so...). No ticks in Ohio in the middle of winter.
Yes, I've had two pulmonary tests. The second one was a little better than the first. But I contribute it to bronchospasms. Some days are worse than others. I spoke to someone at John Hopkins and they said bronchospasms were a part of ALS. I don't know if eating at certain times before a test can help either I don't know. I just know something is very wrong with me. I have not felt good for 1-1/2 years.
Although a bullseye rash is a definite sign of Lyme disease, only about 50% of people who have Lyme ever get one. Ticks can survive more than you think. And yes, you could have been infected for any length of time before the symptoms became apparent. Sometimes people are able to keep the infection at bay until their immune systme becomes stressed in some way (such as accident, illness, divorce, etc.). Then their system becomes overwhelmed and the symptoms emerge. Some people do not get diagnosed for years after the initial infection.
Lyme disease is the second fastest growing infectious disease after AIDS. This is very significant yet nothing is being done to educate the public or medical community. There is a high incidence of it in OH. It can be very serious and debilitating. I hope your neuro is open to the possiblity, many doctors will not even consider it. Remember that no test is completely reliable. From what I understand the test most doctors run first, the ELISA or titer, is the least reliable of all. If your neuro is open, see if he will test you with the Western Blot test at a Lyme reputable lab such as IgeneX in Palo Alto, CA.
The closest Lyme doctor to OH that I know of is either Colmar, PA or Hermitage, PA. If you would like one of their names just let me know.
Good luck at your appointment tomorrow. If you can, do some research before you go.
Hi sandyshuby. It seems that there should be more tests available to check this.
Whatever you do, do not give up. People know when there is something wrong. If a doctor cannot or will not help, see another one. It is a doctor's job to find out what is wrong. I know how frustrating it is to have something wrong and not know what it is or how to get help. Just keep searching--you will find answers.
yes, two. The secon d one was better than the first. I know when I get these bronchospams, my breathing is worse. I am just so frustrated because I know I have bulbar palsy or something because of all I've read. I have sensitivities to MSG which is a sign. I cannot eat anything with gluten now because of the glutumate excitability issue, I just am frustrated no one will diagnose me. I live in Michigan with three ALS clinic and have seen all three doctors. But because I can move my tongue and have negative EMGS they say they don't know. I wish I could have an in with a John Hopkins researcher. If anyone does, let me know.
This may seem like a dumb question - but can parasites cause any of these MA/ALS symptoms? Hope this doesn't disgust anyone, but I noticed a couple of segmented worm looking things about 2-4 inches long after I had a bowel movement. Is this something I should bring up to my neurologist today?
hi bobcat grad
i live in ohio too. ticker is on the nose with the info, there is lyme here! i feel you can get lyme from any blood feeding insect, also from itnercourse and blood transfusions. the red cross just issued a statement related to screening for lyme, something not done now. you will not find your answer in ohio. i go to hermitage pa to dr swami. call information to get the number.
do not delay! i was infected in dec 2000, dx with als in 4 2002 then lyme in 7 2002 and on abx ever since. i have been in a wheel chair for over a year now.
I was just recently diagnosed with Lyme disease and two tick borne coinfections...about a year a half ago I was having severe breathing problems...I had all kinds of pulmonary tests and everything came back fine. It disappated after three months but then I started having very vague issues as far as nerve related tingling etc...then this past March we moved and I was under a lot of stress with the move as well as family issues...in May I got really sick...and it didn't go away. Suddenly I started having a lot of neurological symptoms, digestive problems, extreme fatigue, more breathing issues, chest pain, heart palpitations, hair loss, menstrual irregularities...the list goes on forever...low blood pressure, low body temp...anyway I know think the back ache I had for a year only in the morning after visiting Nantucket was the first sign I had lyme disease and coinfections but I never thought twice about it.
So I do think it can hide out in your body slowly wearing down your immune system.
I hope you both find answers soon. Good luck. I would definitely follow Ticker and Ohio Hunter's advice - I did and finally I am getting proper treatment.