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Old 08-05-2005, 07:40 AM   #1
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Nycadonis HB User
Terrified and terrorized

Hi all-
I apologize for such a long post but I am scared to death and I need to get this out there. I am a 29 year old guy living in New York City. Here is my story. I was a college athlete (10 meter platform diving). After not qualifying for Olympic trials, I stopped diving and relinquished my scholarship. About 1 year later I started having strange unexplainable dizzy spells that would come and go. Typically they lasted about a week and then they were gone. My girlfriend at the time was worried about them because sometimes I would nearly fall down. Lack of balance or dizziness is pretty unusual for someone who can do a handstand 33 feet in the air, spin and twist around, hit the water at 45 MPH and not break his neck! Finally, I took her advice and went to see a doctor. They told me that I had benign positional vertigo and treated it with Anti-vert. Pretty much by the time that I even had taken one or two Anti-vert pills the dizziness was gone. I continued to have a few spells while I was still in Arizona (with that heat who knows what could have been happening) and each time they would go away in about a week. After completing my Master's, I moved back to New York where things were relatively calm for a while. In December of 2000, quite suddenly, I noticed that I could not raise up on the toes of my left foot and developed what seemed to be known as foot-drop. My doctor told me that it was most likely associated with a back problem and had me start physical therapy and TENS. I went skiing about a week later (against doctor's orders) and the next day everything resolved as if it had never happened. In February of 2002 the dizziness was back and lasted for about 3 weeks. The doctor that I was seeing at the time checked me out for endocarditis, infection and all the rest and could not find ANYTHING! She cleaned out my ears- told me maybe that was the problem. About 2 weeks later everything resolved. It happened again about 6 months later. During the 2nd dizzy spell, I went to a routine opthomology exam to get a new contact prescription. My doctor told me that he could not correct my eyesight to 20/20. I had had blurry vision in the right eye but I just figured that I needed the prescription changed. He had me do a field vision test and was concerned. He mentioned that my optic nerve was not inflamed and that he would like me to see a neuroopthamologist to rule out any other conditions. I went to see the neuroopthamologist and the guy was such a jerk that I just got up and left. I didn't pursue any further. In December of 2004 things started getting strange. My right hand and fingers just up and went numb. I had tingling and numbness and when I put my head down to my chest there was wierd electrical sensation in my back.
(possible L'hermittes sign) No one believed me. No one. My primary doctor told me that I was stressed out from my job and that if I just relax things would get better. I started putting 2 and 2 together and came up with the idea that I might have Multiple Sclerosis. I spoke to my doctor about my theory and she told me that I was crazy--AND I had not lost my abdominal reflexes which is quite common in MS. I fought her and got her to send me for an MRI. The insurance company authorized the brain MRI without contrast unless there was something suspicious. Turns out they said that it was completely negative. Nothing there. 6 Months later... 6/2005- my left hand had started going numb for about 2 weeks.. (I am right handed). The fingers started slowing down noticeably. I wasn't able to type or use my left hand to do all the things that I used to do. Again my primary care physician told me that I was crazy and that I am too stressed out yet again. Things progressed with the hand and then the leg got involved too. I had been running daily and noticed weakness in the left leg-- not tremendous weakness where my legs would buckle but something just wasn't right with the way that I was walking and how the leg was reacting when I was putting pressure on it. My primary again told me that it was attributable to stress. Finally the clincher happened. I was sitting at work doing a training seminar for new employees when my boss walked in and asked me if I had just gone to the dentist!!?! It turns out that in addition to left hands and legs that weren't working, the left side of my face had drooped. I promptly went to the doctor who told me that it was just Bell's palsy and that there was nothing to worry about. By this time-- I was so upset that I demanded the name of a neurologist. I went to see the neurologist and he did an EMG study and told me that there was nothing in my spine based on the EMG study but he wanted me to have an MRI of the brain immediately. Again, the insurance company denied the gadolinium contrast. I went and had the Brain MRI and the next day received a call at work telling me that he suspected primary CNS lymphoma or secondary metasteses. I rushed to the hospital and he met me there and did a spinal tap right on the spot. I was then admitted and had a CT scan of Abdomen, Chest and Groin as well as brain MRI finally with contrast. All of the tests for cancer came back negative and the MRI said the following: Impression: Multiple areas of signal abnormality involving supratentorial periventricular and subcortical white matter as well as the internal capsule and corpus callosum. These findings are highly suspicious for demyelinating lesions. Clinical correlation is suggested. Incidentally noted is a right frontal developmental venous anomaly." I dont know if anyone can understand that but I sure cant. After I left the hospital things went downhill from there. I started having what the neurologist calls "partial focal seizures" where my left arm and left leg kinda all cramp up for about 20 seconds and than it is over. He put me on Trileptal. Lastly, I bent forward to pick up a pair of shorts and felt something pop in my lumbar spine. It has been about a month now and I am still in pain. I am having wierd feelings all over my body and the right arm and leg feel the way that the left did when this all started. I am dizzy all the time, I can't focus and I am having some memory loss. Weight loss, lack of appetite and low grade fever. I am even having a hard time reading a book and am on a medical leave of absence from work. I am scared that I am dying. Please, please, someone help me to understand what the hell is going on with me. I am at the end of my rope. Is this MS? Is this cancer? Do I have brain tumors? Can a CT scan of the abdomen, chest and groin change in 1 month? I am at wits end and anxiety ridden. Please someone help me to understand. I will be forever in your debt. I really have no one to talk to about this that knows anything so I am turning to you.
Sincerest thanks,
Ryan

 
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Old 08-05-2005, 08:52 AM   #2
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marion06095 HB User
Re: Terrified and terrorized

I swear the kwap that doctors put some of us through is almost as bad as this disease itself! If your doctor brushes your symptoms off, get a new doctor. If that one doesnít take you seriously, fire him or her too. Donít give up until you feel comfortable with what you hear. On the other hand, MS sometimes takes a long time to diagnose, so hang in there. You are now where many of us have been. Try to be strong, and as The Eagles say, ďDonít let the sound of your own wheels drive you crazy.Ē

 
Old 08-05-2005, 08:59 AM   #3
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Jewel2 HB User
Re: Terrified and terrorized

Hi Ryan,
After your last MRI which was positive, did you go back to your doctor for an interpretation of what all of this means? Have you been referred to a specialist for treatment?

We're not medical professionals here and it is impossible to truly help somebody online figure the medical things out. But we can help you by our experiences which too often includes the frustrating process of getting diagnosed.

You've gotten through the difficult part of finally getting the evidence (MRI) needed to support what you've been telling the docs. Now you need to find the right specialist to decipher it all and form a plan of treatment. The first thing is to find out if it means MS or something else. It sounds like cancer was ruled out, and the radiologist did mention demyelinating lesions, so it may very well be MS. Your symptoms (other than the low grade fevers ??) are very common in MS. If your doc thinks it all points to MS, then see an MS specialist if possible, not just a general neurologist.

The good news is that if it is MS, MS isn't a death sentence. There are therapies available to slow it down, too. And if you have another big exacerbation, IV steroids can help you get through it much quicker than if left to run its own course.

Many people with an MS diagnosis go on to live fairly normal lives, adapting work schedules as needed to accomodate the exacerbations and adjusting their activity levels to stay healthy, but not to the point of overheating or overtaxing their bodies. Just so you know though, some people do get hit hard and life radically changes. This doesn't necessarily mean gloom and doom, just a different life that must really accomodate the MS.

As far as the "right frontal developmental venous anomaly," that was incidentally noted - when a radiologist writes "incidentally" on a report, it means that it was there and notable, but most likely is not related to the symptoms that sent you in for the MRI. I think that a develpmental venous anomaly means that there is a congenital (from birth) malformation of a vein in that area. This is something to follow up on for sure, but I wouldn't worry about it too much.

You might want to go over to another board here at Healthboards called the Research Help Board. Copy and paste this address in your browser:
http://www.healthboards.com/boards/forumdisplay.php?f=160
At the top of that page is a sticky note with some websites that you can search out your symptoms and MRI results. At that board people are allowed to share certain websites that might help you in researching the meaning of your symptoms and MRI report.

Take care,
Julie

 
Old 08-05-2005, 09:04 AM   #4
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beachlover247 HB User
Re: Terrified and terrorized

Ryan,
I am soo soo sorry that you're going thru this. It is extremely scary when you can't get a definite dx. I have been dx since '93, but have had so few problems, until last month, that doc didn't have me on any of the ms drugs. My dx. went pretty fast (about 2 months to get conclusive results), but since I have been on this forum this summer, I have found that you are def. not alone. MS is a bizarre disease and seems to effect everyone differently. Yes, there are some "classic" signs, but these dr's have to rule out everything else before they will say the word ms. Being in NYC you should go to an ms specialist...would be my advice. I know it all gets VERY expensive, but your health is worth it. Please, please don't let them tell you it's all in your head. I am appalled at how many have said their drs told them that!!!! It would be all I could do not to just slap them in the face. Unless you've walked in our shoes, they could never know. This is a great forum and I'm glad you found it. There are some wonderful people on here, willing to share and listen. I don't think I could have made it thru this last month, as well as I have, without them. Hang in there Ryan, someone will come up with some answers and hopefully you can get on some meds to help delay the ms if that's what it is. What did your lp show?? Please keep us posted on how you're doing and remember to 'KEEP YOUR CHIN UP". Sue

Last edited by beachlover247; 08-05-2005 at 09:06 AM.

 
Old 08-05-2005, 09:28 AM   #5
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KelliD HB User
Re: Terrified and terrorized

Ryan.....so much of what you describe is associated with MS, but I am most concerned about that "popping" you experienced in your lower lumbar region. If you have not had that checked out, please do so right away. Any injury to any part of your spine can exacerbate the problems you are already experiencing.

"IF" you do have MS...please understand that it is very difficult to diagnose. MRI's can come back clean, and yet you will still have symptoms! Or as in your case, some suspicious demyelination appears to be happening. This is also indicative of MS. My neuro explained that Multiple Sclerosis means "many scars," which appear once the nerves have been attacked so many times that they can no longer repair themselves correctly, so scar tissue is what is left behind....and this disrupts conductivity between the brain and the central nervous system.

MS is tough to diagnose because it mimics so many other problems. It is diagnosed by process of elimination.

For what it's worth, I was dx'd in January 2004 after years of symptoms (which were easily blamed on other things...I never suspected MS). The main symptom that compelled me and my doc to start down the road to investigating MS was exactly what you have experienced...vertigo. Repeatedly. It would come and go...staying sometimes for a few minutes, a few days, a few weeks. HORRIBLE!

At this point Ryan, honestly, I would recommend (STRONGLY) that you gather your medical records and CHANGE DOCTORS IMMEDIATELY. Keep looking until you are satisfied. YOU are in charge of your health. The doctor is paid by YOU to HELP you, not berate you or doubt you.

Stay in touch and let us know how you're doing!

 
Old 08-05-2005, 09:31 AM   #6
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Mickey32 HB User
Re: Terrified and terrorized

Hello. I'm sorry to hear you are having so many problems. A diagnosis of MS can take years unfortunately. I was diagnosed with it rather quickly, but I actually have a feeling that I was misdiagnosed. Have you ever been checked for Lupus or Antiphospholid Syndrome (sticky blood syndrome)? I hav read that people are often diagnosed with MS when they actually have that instead. APS can be associated with Lupus. Some of your symptoms...seizures, dizziness, loss of appetite, wieght loss, and low grade fevers sound a lot like Lupus symptoms. I am not a doctor of course, but it might be worth it to do a quick blood test for that. Anyway, I hope you feel better and you get some answers soon.

 
Old 08-05-2005, 09:52 AM   #7
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Jewel2 HB User
Re: Terrified and terrorized

Quote:
Originally Posted by Mickey32
Have you ever been checked for Lupus or Antiphospholid Syndrome (sticky blood syndrome)? I hav read that people are often diagnosed with MS when they actually have that instead. APS can be associated with Lupus. Some of your symptoms...seizures, dizziness, loss of appetite, wieght loss, and low grade fevers sound a lot like Lupus symptoms. I am not a doctor of course, but it might be worth it to do a quick blood test for that. Anyway, I hope you feel better and you get some answers soon.
Very good observations and suggestions!

I forgot that you mentioned the lumbar popping. KelliD made a very good suggestion in getting that checked out as well. That is not normal in MS, but could certainly increase neurologicial problems.

 
Old 08-05-2005, 12:08 PM   #8
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deena_sully HB User
Re: Terrified and terrorized

One of these notes said "gather your medical records". I've never seen any of my medical records. Am I entitled to them? Do I just send a letter to all the docs who have seen me and ask for them? Thanks for your help!

 
Old 08-05-2005, 12:24 PM   #9
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Jewel2 HB User
Re: Terrified and terrorized

Hi Deena,
Getting a copy of your medical records is important. There are many good reasons for doing so. For one thing, you can check for accuracy. You wouldn't believe how many mistakes can be found in medical records. My daughter's first neuro had her left and right sides switched around in the reports, and did not accurately record the concerns that brought us to her in the first place. They were a complete mess!

Another good reason is that some doctors include a subjective opinion of you. This tells you what they are really thinking and can be very revealing of whether or not they are taking you seriously.

You have the right to request your records. Some places will give the patient one copy for free, some charge a fee after so many pages, some have a flat fee they charge. It's worth it in my opinion.

Take care,
Julie

 
Old 08-09-2005, 07:28 AM   #10
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Nycadonis HB User
Re: Terrified and terrorized

Hi all!
Sorry that this has taken me so long to get back to you--my laptop was having a hard time connecting to the Internet so I had to get that fixed. I really appreciate all the support and encouragement that I have read here from all of you. It is amazing how everyone really rallies together to make things easier for each other and I am very happy to be a part of your group! I went to the MS specialist (Dr. Brian Apatoff) yesterday and he did another LP. When they did the first one in Lenox Hill Hospital they never included the test for oligoclonal banding if you can believe that! So he repeated the test and the fluid was clear and colorless (hopefully that means that there is no cancer!) They started me on Lexapro and Trileptal (for the seizures)-- although he did give me insight into the seizure thing-- apparently--there could be a lesion in my C spine that has just not made itself known yet. I never knew that that could happen! Anyway... I just wanted to say thank you again, I think that you guys/gals are amazing and am definitely looking forward to chatting with all of you more in the future. Thank you for being there for me!
Ryan

 
Old 08-09-2005, 05:19 PM   #11
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leopard HB User
Re: Terrified and terrorized

I have had MS for 20 years and I wasn't dx until 10 years ago. I went from Dr. to Dr. and test to test just as you are doing. The best advice I can give you is to go to an MS specialist. I did. Good luck

 
Old 08-19-2005, 11:01 AM   #12
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Nycadonis HB User
Re: Terrified and terrorized

Hi everyone!
I just wanted to thank you all for all your support and the information that you provided. I really appreciate it. They did another spinal tap on Monday and they found that oligoclonal banding was present and no malignancy or neoplastic cells. They are going to start me on a regiment of Copaxone. Does anyone have any experience with this drug? I went to an MS specialist and he told me that this wasn't the strongest of drugs but went ahead with prescribing it anyway. Does that mean anything? Do you think that he would have tried to steer me in another direction if it wasn't the right choice? Please drop me a line and let me know your thoughts.
Hoping that all are doing well and thank you again for all your advice and support

 
Old 08-19-2005, 12:20 PM   #13
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Mickey32 HB User
Re: Terrified and terrorized

Hi. Sorry to hear about your diagnosis. I have been on Copaxone since March of last year. Your doctor may have chosen Copaxone because all of the other drugs are interferons, and a side effect from taking them is depression. The only bad thing about Copaxone may be that it's an every day shot, but you don't get all the bad side effects with it like you can get with the interferons. I haven't had any major MS problems since being on copaxone (knock on wood) except for the occasional tingling in my feet. Anyway, I'm glad that you got a diagnosis so quickly, even if it is MS. Good luck and let us know how it's going.

Michelle

 
Old 08-19-2005, 09:36 PM   #14
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Jewel2 HB User
Re: Terrified and terrorized

Hi,
I'm glad to hear you're starting on a therapy so quickly.

Coincidentally, I just finished reading the results of a 4 year study in Germany where the 4 CRABs were pitted against each other. And the winner was....Copaxone!

In a nutshell, on average, Copaxone reduced relapse rates by nearly 75%. By contrast, Rebif showed a 51% reduction in the average number of relapses, Avonex dropped relapse rates by 43% and Betaferon gave a 38% reduction in the number of relapses. This data is a little bit in contrast to past studies that showed them all to be pretty even, with Copaxone being ever so slightly less effective.

One very disappointing piece of information that emerged was that none of the treatments had any beneficial impact on the progression of MS. What I interpret this to mean is that although they slow down the relapse of symptoms, overall they are not really slowing down the disease progression. If this is true, I am not happy about this outcome of the study. We are really counting on the Copaxone to slow things down for my daughter.

Another important fact that came out of this study - those on Copaxone tended to stay on their therapy, and fewer of them dropped out of the study compared to the other treatment groups. It makes me wonder if this is part of the reason that Copaxone came out on top. Even if so, if a person is more likely to stay on a therapy, that definitely increases the odds of effectiveness.

This is probably more info than you really wanted, but since I just read it and you happened to ask....

Best wishes,
Julie

 
Old 02-11-2010, 09:44 PM   #15
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pidgylogic HB User
Smile Re: Terrified and terrorized

Hi Ryan!
Have you been diagnosed yet? I really feel for you as I am going through many scary and debillitating symptoms which all show up on the web in one form or another. Seems like almost everyone that has neurological symptoms are also undiagnosed. I am terrified too, as I went from relatively mobile and active to barely functional all since April 2009. My bladder does not work (urine retention) due to neurological problems and non-stop sensation of burning skin with focal points of very intense pain, weight loss, deep seated stabbing pains, l'hermittes, skin sensation of water (sometimes warm, sometimes icy cold) which moves around body but only below the waist, sudden loss of muscle support in knees...it goes on and on...I too am terrified at the way I have become so weak and fatigued where just getting out of bed is a supreme effort...I have many of the symptoms you record, have you found out the diagnosis yet? I have had many MRI's and non-mechanical nerve function tests. I am scared that the diagnosis will never be found and I will have to endure this unrelenting pain and weakness - my life is useless until I can find a treatment. I dearly hope you have found a diagnosis and a solution...Suki

 
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