thoughts? overwhelmed!
________________________________ From: Dalton Garis <malugss...@gmail.com> To: john snodgrass <jcs...@yahoo.com>; em...@telephonelady.com Cc: transverse myelitis <tmic-list@eskimo.com> Sent: Sat, September 18, 2010 8:26:50 AM Subject: Re: [TMIC] New developments Hey, all; I just spent from 9:00 AM to 3:00 PM spazzed out, with no control of my arms, legs, trunk, voice or facial movements. The spine between the shoulder blades was burning all day, and every time I tried to move or do anything I would lose control and couldn’t even talk. In fact attempting to talk caused the whole body to spaz. I have no idea what started it, except that I went skating yesterday and then spent most of the rest of the day tutoring my favorite subject to a willing student, the economic implications of many divine teachings. This was not one of my epileptic-like attacks which just started recently, where it starts in the head like a storm, mood changes and other things occur and is physically over quite soon. This was just a pure spasticity event. Consciousness was not altered at any time. A very nice lady who works nearby came to stay with me. She knows medical massage learned from her father who practiced medicine in an isolated Philippine village. She massaged my scalp, face, back and hands, and no doubt it helped to calm the spasticity. God bless her! You might recall my telling you all when it had been 16 days without any symptoms. Now the spasticity attacks are back, along with this new epileptic attack which takes days to recover from. Those started about one month ago and were very different from the outset from the spasticity attacks I had before. In fact, even though I termed the spasticity attacks “seizures,” because they were all over and left me helpless, I now know that they were not seizures. I know because now I get real seizures of the epilepsy type. They may only last 20-30 minutes but are far more upsetting. Consciousness is whacked, the sense of where and when is really bent, and the mood changes totally. There is an aura before if it comes on slowly, but not if induced by getting out of breath or from strobing or flashing lights and images (I don’t watch TV anymore and CRT screens are a no-no). After the seizure there are feelings of bad depression lasting for about 4-6 hours. I never get those after the spasticity attacks now, but I did before except not too badly. Maybe the TM opened some gateway to the brain so that besides the expected spasticity attacks, now these partial epileptic fits are added to the mix. Or maybe the old attacks were a combination of both spasticity and seizure, but have now diverged into distinct types, one purely physical and the other an epileptic type. A doctor told me that if the epileptic seizure involves the temporal lobe where emotions are then it would cause the mood changes. My current neurologist has no clue about any of this, so I am seeking a dedicated epilepsy doctor, since, by definition, anything more than a one-time seizure directly associated to some event such as a stroke, accident, etc. is termed “epileptic.” Any thoughts? Dalton Garis Abu Dhabi, UAE ________________________________ From: john snodgrass <jcs...@yahoo.com> Date: Fri, 17 Sep 2010 17:24:43 -0700 (PDT) To: <em...@telephonelady.com> Cc: transverse myelitis <tmic-list@eskimo.com> Subject: Re: [TMIC] New to TM Resent-From: <tmic-list@eskimo.com> Resent-Date: Fri, 17 Sep 2010 17:24:44 -0700 that is sooooo classic. i remember the morning i decided it was time to go to the Dr. when i got out of bed my whole right side was numb. top of my head to the bottom of my right foot was numb. when i walked i too had to look at where i was going because it felt like the floor or steps was moving away from my feet when i steped on them. took a shower before Dr visit and was worried because thwe water was so cold. it was hitting my left leg. i put my had in it and it was hot! i turned the cold water only on and it felt hot on my left leg. my Dr too thought i was in the process of having a stroke so she sent me to ER. as things would have it there was a neurologist in the Er that day walking past and was able to diagnose me quickly. he has several TM patients and they seam to be doing much better than me. that makes me angry,not at him but at TM. then again theres the 33% rule. you can read about it in the info you search for on the web. i learned about it at ninds website Transverse Myelitis Fact Sheet http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm some people like this one,some dont. we all judge ourselves in our wants and dont wants but never one another. we have to bear our own burdens but at the same time bear one anothers burdens. in the greek language that word is defined in more than one way,one way has to do with the burden in your own mindthe pain and disfunctions of the body. I cant change your mind.facts are facts,hubby hurts! another way is a burdon of the heart. i can encourage and exhort you with lovong careing words that may help you along. words fitly spoken are like apples made out of gold in like a water picture made out of silver. thats worth quite a lot! sure wish your hubby would chime in on these. ________________________________ From:Emily <em...@telephonelady.com> To: tmic-list@eskimo.com Sent: Thu, September 16, 2010 11:30:34 PM Subject: [TMIC] New to TM Thank you to everyone who responded to my initial email. It is wonderful to know that I am not in this alone. I guess misery likes company ;) Let me tell you a little about how we came to find out that my husband has TM. At the beginning of August my husband was getting constipated which is something that NEVER happens he is like clockwork each morning. After playing with this for about 1 week taking laxatives, etc. he began to get a numbing feeling in his lower left abdomen. This scared him so he made an appointment with our regular family doctor. Our doctor sent him for a cat scan of the digestive system and it was negative. Then he sent him for a colonoscopy on August 25th. On the morning of the colonoscopy he couldn’t get out of bed because his left leg was totally numb. I had a walker in the garage from a previous broken ankle so I went and got him the walker and I took him to get the colonoscopy. This frightened me so while I was waiting for him to come out of recovery I called our family doctor and told him about the total numb left leg and he said to bring him into the office the following day. The family doctor said he wanted him to go for an MRI of the lower lumbar so the following Monday (August 30th). While we were waiting for that Monday to roll around the numbing got worse and he lost all use of the leg he described as dead and he was also antsy….he couldn’t sit still or lay down….he seemed very agitated. During the early hours of August 30th he fell in the bedroom trying to use the urinal while holding onto the walker. I couldn’t get him off the floor nor could he help me because of the dead leg so I called 911. He was taken to our local hospital’s emergency ward and they cat scanned his head looking for a stroke but the cat scan was negative showing no signs of stroke. He was discharged at 8AM on August 30th and I took him directly to the MRI he was scheduled for that day. The MRI showed some stenosis in the lower lumbar region but not enough to cause this kind of numbness so our family doctor got us an emergency appointment with a neurosurgeon on Tuesday August 31st. He was admitted to the Pennsylvania Hospital in Philadelphia right from the doctor’s office and additional MRIs of the thoracic spine were taken and then another one with contrast and it was in these MRIs where they could see abnormalities (lesions). He was then turned over to a team on neurologists and more tests (cat scans, blood tests, MRIs, and spinal taps) were taken. He was also tested for every known viral and/or immune disease known to mankind to include Lupus, Lyme, Herpes, HIV, Hepatitis, just to name a few. On September 3rd he was diagnosed with Idiopathic TM and that evening he was given 1000 mg of prednisone. He had 5 of these treatments and then released to an Acute Rehabilitation Hospital which is where he is right now and has been since September 9th. He is currently being weaned orally off of the steroids. He is showing progress but it is slow. He does now have the ability to lift his left leg but it is still totally numb and he must look down to see where his foot his before taking a step with the walker and assistance from the PT staff. He has no pain and the antsiness seems to have disappeared. I am now in the process of getting our toilets in our home changed to the higher off the ground toilets with grab bars installed on either side of the toilet and grab bars installed inside the shower. I am also getting the glass shower doors to our walk in shower taken down and I will replace them with a heavy duty shower curtain. Luckily we live in a one story home on a concrete slab and there are no steps that he will have to deal with. That’s my story…..and I am sticking to it….LOL I am sure it is similar to many others in this group. I don’t like how I found all of you but I must say that I am glad you are right here at my keyboard and over the next few months I am sure I will have lots of questions. Thank you so much for being here even though it isn’t in the best of circumstances of meeting people. Love to all of my new TM family….God bless all of you, Emily Meyers Columbus, New Jersey
