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Posted 7/2/2010 10:22 PM (GMT 0)
Hi everyone,

I'm new here and here is a bit of background.  It started a few months ago with vibrations in my feet, then moved onto tingling sensations, burning skin feelings, electric shock sensations, cutting pains in fingers, muscle spasms and twitching.  I recently had an MRI done on  my brain with & without contrast.  It showed 8 lesions on the brain but they weren't active.  The neurologist explained it as gray matter or possible old scar tissue.  I have to have a follow up brain MRI in September.  I'm also having an MRI of my neck done tomorrow.  I have an appointment with a rheumatologist on Tuesday to see if this could fibro.  Lupus, lyme disease, rheumatoid arthritis have all been ruled out.  B12 normals were fine but B6 was a little low.  I am now taking supplements for that but it hasn't improved my condition yet and MS hasn't been ruled out.  If I have more lesions in 3 months, then the neurologist will order a full MS work up.  I just want to know what is wrong with me and do my symptoms truly fit MS? 

Posted 7/3/2010 3:35 PM (GMT 0)
Are you seeing an MS specialist?  If not, go see one.  Scar tissue in the brain?  What is that?  8 Lesions is a lot.  Get a reasonable explanation for that.  Also get all your MRI reports and CDs with a copy for your own records.
Posted 7/3/2010 11:38 PM (GMT 0)
I got copies of my first MRI today. It mentions white matter and not gray matter. How do I find an MS specialist? Would that be a different neurologist?
Posted 7/4/2010 3:39 AM (GMT 0)
Call your local MS Society.  They keep a list.  Yes, it is a neurologist that specializes in MS.  They typically only see MS or CIS/RIS patients. 
Posted 7/4/2010 7:10 AM (GMT 0)
Gretchen,

Thanks for the tip! I will do that early next week.
Posted 7/5/2010 11:58 AM (GMT 0)
Is white matter active lesions?
Posted 7/5/2010 4:38 PM (GMT 0)
White matter is a type of brain tissue.  White matter is suppose to be there.  It is the part of your brain that connects portions of your gray matter.  MS lesions typically show up only in white matter portions of the brain.  It is one way to make sure that the lesions that are there are typical of MS.  The term "lesion" just means spot or area that appears to be abnormal.  It can be a stroke site, a lyme lesion, an area that was affected by migraines,a bad infection,  a tumor or even brain cancer. 

Active MS lesions only show up with "contrast".  Contrast (gadolinium) is injected towards the end of an MRI and it is a dye that will cross the blood/brain barrier to show if a lesion is active.  Active lesions tend to show bright white on an MRI.  If a lesion is older than it typically shows up gray/white. 

Posted 8/5/2010 7:59 PM (GMT 0)
HI LanaBear,

I just saw your post.  Your and my symptoms are VERY much alike and I'm scared to death.  My symptoms started after a very stressful year.  At first I was told I had gastroparesis, than I was told, no it was my gallbladder.  Had that removed in January 2010.  Then, in March I started have the tingling, twitching, vibrations, etc.  All my docs told me it was anxiety.  During the course of this, one doc sent me to UCSF MS department to rule out early MS.  Anyway, had an MRI.  While waiting for results, finally started taking Prozac because I was SOOOOO stressed out and depressed about the symptoms and very scared.  I had been on a short course of taking Reglan after my surgery, so I thought I'd given myself Tardive Dyskinesia.  Anyway, the tingling, etc went away but the Prozac gave me major acid reflux so I went off the drug.  My tingling is stilll there but barely noticable.  I do not have gastroparesis or tardive dyskinesia, thank goodness.

Two days ago, I finally go for my MRI results and to my surprise, I had 20 lesions on my brain.  The lesions aren't in the "normal" area that they see them for MS and I don't show many other signs (weakness, vision, etc.), so they aren't sure what is wrong.  I will be having a lumbar puncture and c-spine mri and a couple of other tests and they are doing a bunch of bloodwork.  I have to say, I'm pretty much freaking out.  Up until last year, I was very healthy, I eat healty and workout regularly.  Now I'm crying all the time and so scared about what my future holds.  I'm a fit 48 year old female.  I really don't remember much of what was said during my appointment because I was sure that it was going to be normal because my symptoms pretty much went away after my anxiety got under control.  So, to hear that it wasn't normal really shocked me and I didn't know what questions to ask, etc.

Since our stories are so similiar, can you keep me updated on how you are doing please.  I am scheduled for a my spinal MRI on September 2nd, 2010.  Seems so far away.  I you want to keep in-touch with each other, I would love that.  I am in Northern California.

Carrie

Posted 8/8/2010 5:27 AM (GMT 0)
I just lost ten minutes of notes on my life, but I have suffered it all from the time I was 25. I am now 59 and it has taken until I was 57 to get a dx. I was mistreated by the medical community, almost lost my life from an uncaring strink, who said that I did not want to take care of myself or my family. Since waking up in ICU from an overdose with this doctor, I have raised three wonderly professional, successful children and managed to continue with my life.

I have had numbness, fire like pains in my head, dragging my legs, cramps in my legs feet and toes, intestinal infections that led to loosing 15" of colon, bladder infections my whole adult life, panic attacks, depression ( and don't let anyone tell you that it can't get so bad, that you wish your whole life was over), sexual problems, and giving up on the whole medical community because it takes years to find a doctor that can really read an MRI and make a dx. I had two and three lumbar punctures twenty 5 years ago. I had one three years ago and the radiologist said it was clear. I had another at another hospital read by the ms doctor and was told that both MRIs were positive with leisons on my brain on both computer discs.

Don't trust anyone, go to the largest MS clinic at the largest hospital you can find and don't take no until you get an answer. LIfe is too precious to loose time and opportunities. There is no cure, but knowing can change your life and the way people treat you and take care of you.

Posted 8/12/2010 3:15 PM (GMT 0)
Wow who knew how difficult this process would be. Last September I was diagnosed with MCTD and then on Oct 3,2009, I woke up and couldn't see. My left eye was the worst but my right eye is also affected. Eye dr said optic neuritis (forgive spelling) and sent me for an MRI. One was done on my brain and also on my spine. The one on my brain was clear, but I was told that sometimes that can happen if the disease is still early. The one on my spine showed inflammation. No true lesions but there wasn't any explanation without further MRIs in a few months. Ihaven't gotten those yet. Idk... I twitch and cramp and have muscle weakness in my legs and muscle spasms almost all the time. It is usually in my left thigh but sometimes it can happen in my right leg or my upper arms. Heat, outside or even from cooking or showering makes my eyes worsen. It also makes me weak all over. The bottom of my heels itch and I feel like I have needles all over my body. I do however get lots of exercise running back and forth to the bathroom. My bladder always feels full. My regular dr (MD) says some of that is Lupus and my eye dr says some could be Lupus but most sounds like MS. I haven't seen a Ms specialist. I don't have insurance and now that I have the MCTD diagnosis I can't get it; at least not afforadably. I don't know what to do. I really don't like the thought of being on steroids all the time and the plaqutinel gives me serious headaches. If anyone out there has any ideas about how I can get to a specialist and how I can get on with my life with a few more "feel" good days, I'd really appreciate it.
Posted 8/12/2010 3:20 PM (GMT 0)
Lanabear, I understand your fears. I am 33 years old, I was pretty healthy til 2008 and I had a preforated bowel after my hysterectomy. Since then I have been sick ever since. My liver has all but failed twice. Thank God it is the only organ that can heal itself. I have 3 kids and I worry all the time. I know exactly how you feel. I am so tired of the "we don't know whats wrong, can't explain why you feel so bad". I just keep praying. I will pray for you too.
Posted 8/12/2010 4:00 PM (GMT 0)
Something I forgot to mention earlier it Vertigo. If anyone has any tips about how to deal with Vertigo, I would love to hear them. I have it a lot. I can't lay on my back, it happens sometimes when I am sitting, and sometimes when I am driving it gets so bad I have to stop and I even get severely sick at my stomach. Just the other day, it was cloudy so I took my kids to the park and they talked me into getting on the swings with them. I nearly fell over. Once forward and back to the ground was all I could handle. Any ideas????
Posted 8/12/2010 4:57 PM (GMT 0)
I don't know where you live, but I live in NC and UNC Medical Center has a MS specialist that is considered one of the best. It is also Aug and we have had a very hot summer all over the country. I am very stubborn about the heat and try to keep doing things, but I have been really suffering this summer even giving up going out to do anything outside. My cramping has been worse than it has ever been. It has awakened me in the morning with a cramp that made me cry out and it took the maximum amount of baclafan and 4 days to get over the residual pain.
I make myself lots of very icy smoothies, take colder showers, eat less heavy food, and take lots of inflammatories like heavy coated aspirin for pain. I am hoping for an early fall and cooler weather.
Also I have heard that eating less red meat is good for MS. My doctor has never said that, but for some reason, I just have lost my desire for meat. I might sound strange but, I eat a lot of peanut butter.
The problem with your eyes must be very scary. Thank goodness, I have never had that. I go to have my eyes checked every year and so far nothing has shown up. That must be one of the worst things that can happen.
Vertigo comes and goes, but mostly it is just my balance. If you need a cane, use one. It is better than falling. Find one that is light and small. I have my grandmother's cane and it is very good for uneven areas like parks. I had small children the first time I had problems at 35 and they never minded me using a cane if it helped their mom.
Posted 8/13/2010 7:45 PM (GMT 0)
Thank you for your reply.  I live in AR and I can't seem to find any help or guidence about how to get to the right dr.  I have completely given up on going outside. I go only from the car to the house and vice versa.  I eat ice all day.  I also run to the bathroom all night but that is about the only way I feel cool.  My house is airconditioned (thank God) but I am still always hot.  I have always been a bit clumbsy so the staggering isn't noticed too much by anyone but the dizzy spinning feeling is rough.  Even though I am not sure if it is MS yet there are so many signs in that direction that it really worries me.  I already know I have MCTD and have Lupus for probably half my life according to what I have learned about my medical history.  I have 3 kids with ranging levels of Autism and they require a lot of attention from me.  How do you get your family on track to fit around your health and ability needs?  I can't make them or even my husband understand when I am having a terrible day.  Two of them will need assisted living help forever.  I wish I knew what I could do to make sure that I am as healthy as possible for as long as possible.  I have so many questions, as I am sure everyone in our boat does.    
Posted 8/13/2010 8:48 PM (GMT 0)
You may want to contact the local MS society.  They keep lists of local doctors who are MS specialists.  Has the Plaquenil been ruled out as the reason for the vision problems?
Posted 8/13/2010 10:32 PM (GMT 0)
Yeah the opotic nerves swelled before I started taking Plaquactinal.  I started it about 3 weeks later.  They were a little worried about giving it to me because of my eyes, but my inflammation and pain were bad enough and my eyesight was already over 2200 in my left eye and 1800 in my right so I guess they figured that it could get too much worse.  Thank you though for the thought.
Posted 8/14/2010 2:32 AM (GMT 0)
Maybe I am a little off, but what is MCTD? You have your hands really full with the children. Does the Autism Ass. have help for you? It is strange that husbands can't get it until they hear the doctor say "Yes, you wife his (THIS). They tend to just put excuses on everything until forced with the truth. My children were 4, 10 and 14 when I was sick the first time and I was 35. I was really sick for 5 years even though I had milder problems that were just put off to you are stressed or depressed. My daughter was always worried I would die when they put me in the hospital and at home she would not let me close my eyes at night when I read her a story. My two sons were off doing their own thing and just wanted me to get them where they needed to go. I put hand controls on my car. They acted out a lot and my oldest son was the biggest problem and got in serious trouble a few times. (They are all fine now, 29, 35 and 39 and professionals doing well). Maybe some of your children's problems could be concern for you and they come out in different ways.
I had from 1995 until 2007 without serious problems. I had some bowel and bladder problems, that I did not know were from MS, but I had no walking problems. You can have long remissions at your age and we will hope for that for you.
Posted 8/14/2010 2:35 AM (GMT 0)
Your eyes worry me the most, because they have the most affect on your daily life. Have you had IV steroids to stop the inflammation?
Posted 8/15/2010 6:23 PM (GMT 0)
No my MD is basically refusing to do anymore treatment besides muscle relaxers adn antiinflammatory meds until I go to a specialist. I am hoping to get there in the next month or so.
Posted 8/16/2010 9:15 PM (GMT 0)
Dear mep,

MCTD is Mixed Connective Tissue Disease.  It is an overlapping of Lupus, Scleraderma, Myostisis.  It's like having an autoimmune disease on steroids.  If I understood correctly the MD said that it potentially carries the symptoms of like 5 or 8 different autoimmune diseases.  He said that I may never develope some of the syndromes but the potential is there.  I had never heard of MCTD until I walked into my dr office last fall. 

 

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