MS? Please Translate MRI

[bear2764]

Hi, I've seen people ask for MRI Translations but never give any more background than that so lets see if i can give you everything...

Symptoms
Numbness in lower back and down spine- Jan 2007
Numbness and tingling in lower back and Right arm - march 2007
Went to Emerg - Spinal XRAY Clear, scheduled MRI
Numbness and tingling now affecting Torso, Both Arms - May 2007
June 2007 Had MRI of cervical spine - DX MS (student attending doc)
Numbness and tingling, Torso, Thighs, right & Left arm Including Paralysis of hands - August 2007
Symptoms went away
MRI - Sowed clean brain scan - No MS DX Transverse Mylitis
Terrible mid section pain - Jan 2008 - CT W Contrast showed nothing, possible virus, given antibiotics, no relief, just went away
Numbness and tingling - Rigth Arm & Terrible Miagrains - April 2008
Forwarded to Hospital after hospital then MS Clinic
Neuro said Brain Scan clear, one spot occurred on T1 but it was "missed" on the other MRI and most likely NOT new.
No Doctor for two years (moved to BC)
Forwarded to UBC MS Research Clinic

MRI Findings (1 yr ago)
A Single T2 and FLAIR Hyperintense Subcortical White Matterlesion is identified in the right temporal Lobe which is likely unchanged. no other cortical or posterior fossa hyperintense foci are seen. No other brain, CSF space or osseous abnormalities are demonstrated.

The Cervical Spinal Cors is normal in caliber and contour with Mutiple T2 and PD Hyperintense Foci seen within it. The largest is 7X4mm in transverse ad AP diamater, and 1.4cm in craniocaudal Length extending from the C3 to C4 vertebral levels. Smaller Lesions measuring 5mm in mean rounded diamater centrally at T1-T2 and 5X3mm centrally at the level of the T4 vertebral body are identified.

No other abnormalities of the spinal cord.. bla bla bla

IMPRESSION
there are mutiple T2 and PD Hyperintense lesions within the spinal cord and a solitary right Temporal T2 hyperintense White matter Focus, as described. some of the cervical spine findings are subtule and thecompatrison images are unavailable at this time to assess for intercal change from the mentioned june 2007 MRI. Fiven the distrubution of these findings and thier apparence, demylination would be the most likely possibility.

Symptoms today
Unable to concentrate
Issues with remembering little things
Issues typing (i havent spell checked on purpose so it is demonstrated here)
Tremor in left and right ring fingers and middle fingers
Numbness and tingling in R Arm and torso (left side unaffected) comes in waves
in contenance (blagger)

When I saw he last she DX probable MS. now I'm about to see her again,  on the 18th. i have video of the tremors of my fingers and have recentily gotten into a pickle at work for typing "***" instead of "as", I'm unable to detect typographical errors completely and have to write VERY carefully and red things 10-15 times before i sent them. I also have communicative problems where I auto inject works where they should not be. like saying "i'm at the outlet" insetead of "i'm at the sotre" my wife thisnks its comical sometimes. I can't see the errors in my typing unless spell check pocks them up. :'(

Please I need help...

[bear2764]

Survivor, Indeed...

what i've survived..
Three surgeries (allergy to anesthesia...whoops on the doc. ;) )
4 Car accidents (none my fault, oh the joy of the passenger...)
Two Drownings (nearly got hauled down river in chest waders, saved by another fisherman, and quicksand (loose gravel bottom swallowed me) in a river..)
Thin - Ice drowning (fell through walking home one night)
Tree Fall (fell from a tree on a stump nearly impaling myself..)
Soon, I can add this to the list ;)

There are ALOT of "herb" products approved for medical use in Canada. Sprays, Pill forms (you can buy baked goods made from the herb's spoils as well, mmm cookies ;) )

I wouldn't let your Faith get in the way of seeking all options of treatment. especially if you look at it this way.

God Made pot, Man made Alcohol, which is the better choice?

I'm not aware of your denomination, but pot has been used since very ancient times to treat different illnesses. It's only labeled now and attached to a certain stigma due to easy cultivation, availability, ignorance and miss-use.

From a religious aspect, he gave diseases, and he gave the means to treat them. Man does not need to "discover" or create new compounds, just find the ones that have been around naturally for centuries even millions of years and put them to use.

[maxthecat43]

It sounds like you've been through a very tough journey; but it also sounds like you are a survivor with enough confidence to do well.

I like the idea of the juice feast.  I think I even have some books about detoxing with juices.  Hmmm, more to think about.  Can't do the pot, it's a religious thing...  (My husband had a little "herb garden" when he was a teenager... Every time he hears something to do with this "herb" he makes some silly joke.)  I went to an event sponsored by Copaxone once, and the doctor said there is a new drug in the pipeline (in Britain only, not the US), that is based on it.  So, since you are in Canada- it may come there- if it's approved for the public.

You're also right about the bacon!
Tammy

[bear2764]

The Diet Changes made a MAJOR difference, I know how u feel on the "new diet will cure all" my wife pushed for years until i gave in and finally just did it. I feel a lot better now i'm not so overweight. It's taken pressure off my knees and legs(i lost 56lbs). It hasn't done much for the excersise part. I'm one of those lucky ones where 1 minute of jogging is enough to set off paralysis in my right side.

I'm VERY heat sensitive and my body tempature is generally higher than average. My wife calls me her personal furnace, makes great for colder nights. I think it has to do with the fact that I am of direct viking decent and am just fitted for colder climates. But because I'm already running quite hot (I don't own a winter jacket, I never get cold...) any extra heat from a shower, bathe, Hot tub(god forbid a sauna), walking for 30 minutes or 28degree (i think that's 85-90F for you guys) weather i loose use of my right side.

Therefore, I haven't really been able to excerise much to date, even though i know its very important to do so, its very inconvient. I'de rather not and just not deal with the symptoms, but I did start biking again and I have a nice magnetic resistance excersice bike that i can ride in front of the tv.

If you are looking to clean out toxins, a Juice Feast will do that. it's does not have to be as extreme as mine (30days) but you can fest for about 10-15 and see how it goes from there.

what it does is this:

Shuts down digestion / put it in sleep mode
Because your getting all nutrients from juice the stomach does not need to work, and saves that energy and puts it all to what yur doing through the day.
Fat loss is a side effect - When you feast you body metabolizes all the stored fat so the longer the feast the better.
Super low-calorie diet - Juicing offers less calories, you will be consuming 800-1000 calories / day, and will not feel hunger.
there are lots of sites on the subject just search juice feast.

Here is some good articles on pot and MS:
http://health.msn.com/health-topics/multiple-sclerosis/pot-might-help-ease-multiple-sclerosis-symptoms
http://norml.org/library/item/multiple-sclerosis

There is evidence that pot can protect the brain and slow progression. as for the cognitive effect, I smoke a specific strain targeted as a replacement for a narcotic muscle relaxer (which i do have but refuse to take), it doesn't cause too much "spacyness", about an hour before bed.( it's called Rock Star http://www.kindgreenbuds.com/marijuana-strains/rockstar.html)

This has worked REALLY well for the spasms, and the side effects are minimal, a bit of cognitive impairment. I'd sacrifice my cognitive abilities for a few hours at night for a good rest and work filled next day. I also experience  less urinary urgency and spasms during the day after smoking(most likely because of the GREAT sleep). spasms will creep up later in the evening (around 6pm).

I believe that medicine is good, like antibiotics when your sick. But when your treating chronic things like MS, Fibro, Cancer, Parkinsons where the drugs can only do so much, I'de much rater run the natural course and not pump my body full of chemicals (slowing the progression or not).

Now comes the argument where people say "pot kills brain cells". well yes it does, when used excessively. guess what, so does the thing we live with. to be honest, i think eating a meal of Bacon, steak, and eggs for dinner every night is much worse for your health than 1/16th of a gram of weed.

It's all relative on how you look at things; Opening your mind to all the facts, and comparing them. I know that no one is really arguing against my pot use, but recommending to try the drugs to help treat... I see your point of view.

I do not trust doctors, why? I had a very bad experience when i was 7. I had fallen at the local pool. One leg across the deck and one leg into the water, I ripped myself open (the tiny patch of skin between the vaginal area and anus). After every family member at my grandparents checking out my cooter (BTW, I am a girl.), grandmother, mother, grandfather, two aunts and an uncle to be... I was whisked away to the hospital only to be poked and prodded at by another 30 doctors and nurses, questioning every time they came into the room. "what happened?"  My mother FINALLY stepped in and made them stop, they wanted me to say that someone tried to rape me in the changing rooms or at home... that was not the case, and badgering a 7yr old to get them to change their story to suit what you want to hear isn't fun for the 7 yr old.

Since moving to BC, I've also had a botched surgery, that I'm now seeing another surgeon to fix. I fell off a train in 2010 and spirally fractured my little finger. It was pinned twisted and i only have about a 45 degree movement remaining due to bone bumped up against the knuckle.

include all the neurologists I've seen, and you can see why the Canadian health care system while free (in some provinces, I pay for it in BC) in most cases, *****. I think if i was in the US with $$ I'd get much better results. My wife being american (gay marriage is fully legal in Canada, YAY Canadia), claims to never been seen by a doctor here and I am to drive her to Washington in case of an emergency.


Always such long replies..*sigh*

I will discuss options with my neuro this time round, but I don't want to take a dug for symptoms and have to medicate with other drugs to manage the side effect of the first drug. it's an endless cycle that pushes cash into the pockets of the pharmaceutics companies who don't give a crap about the patients.

My dad is missing two discs in his back, when he met my mom he was on 30 different irrelevant medications, since they've been together they've reduced it to 6 primary meds. His story is more painful than mine.

He had a milk cooler fall on him, and instead of a chiropracter they sent him to physio, it wore away the 2 discs. workers forced him to have 1 sugery (disc fusion) which didn't take and was split in half lengthwise. Whenever they checked the xray after him returning because of extreme pain, the would tell him the pain is in his head. After Shock therapy, anger management therapy, Impotence treatment (drugs caused it) and a last resort trip to the major hospital in the province someone decided to xray him bent over instead of flat on his back, the xray revealed the Fusion had not taken and actually had split lengthwise and when bent over it was separated. it took them 10 years to figure it out...

Trust them? hmm, Bacon sounds better...

[maxthecat43]

Welcome Bear,

Have you read our Health Pages yet?  Even if they don't tell you anything new, the confirmation may be helpful to you.  I go back and reread them periodically.  I agree with Lulu, you should perhaps look again at a dmd.  I didn't know I was sick for a long time (I just thought maybe I was stressed out-so I didn't usually report), so  I wasn't taking anything for it for many years.  I have a fair amount of accumulated disability now.  Perhaps things would be different now, if I had been on one of them.  

Of course, there is no way to be certain.  The drugs don't stop ms progression, but the numbers show that they do slow it down for most people.  Some chance is better than no chance, right?  The side effects  can be managed.  

Let us know if the dietary changes help, okay?  My mother is always trying to "cure" me with some new diet.  My neuro says there is no proof, but it doesn't hurt to try.

Best of luck to you, and  I hope to see you around here again.
Tammy

[bear2764]

Hi Lulu,

The calgary dr. that i described as "Short, not overly knowledgeable, Liar"  did the following.
a) told me my brain scan was clear and there were no lesions or anything
b) told me the spot that appeared wasn't new and just didn't show on the previous MRI
c) was quick to put me on amatripline which is an antidepressant, i understand the concept of using it to treat nerve pain, but she didn't really discuss the extent side effects (extreme drowsiness), which i didn't find out until it was too late and i nearly crashed my car twice. she also didn't offer many other options.
d) kept all visits to a minimum amount of time and practically dismissed the very long list and dated record of onset and offset of symptoms I kept and typed for her(I don't enjoy repeating myself between dr. to dr. and like to take initiative and keep records of things that should be important). the longest i was ever in her office was 15 minutes fore the first exam, the second exam after the MRI was 10 minutes. where she wrote me the prescriptions and said she would see me in 6 weeks to check the dosage of the anti-depressant. after the 6 weeks i was taken off the anti-depressant and moved to the lyrica.

When I came to the UBC Clinic and Spoke to my new doc despite the forwarded records My visit lasted 3 hours.
the differences then came into play
A) There is a single lesion on my brain
B) the new spot the previous neuro dismissed was in face New and of serious concern as it is very close to the brain stem.
C) Lyrica is better for Fibromyliga and i should stop taking it
D) Health came into play - I was going through some  things prior to this visit (job hopping & borderline homelessness) and i had gained some weight from stress. She game me a full list of foods I should NOT be eating. we had a very long discussion about this.

After the very long discussion with my new doc, I made some lifestyle changes (which is why i try not to take man made chemicals). I did a 30day juice feast and dropped 30lbs Began eating a Raw diet. mmmm lettuce ;)

When I weighed in at her office i was at my heaviest, a whopping 278lbs. Now after the whole diet change I'm at about 225 - 230 and slowly taking the rest off.

Since December I've been introducing meat back into my diet and that has significantly slowed the loss. I must also include that I was(before lifestyle change) on a caffene overload and taking 16-2000mg of IB profin daily to manage pain as the narcotics i have zombify me and I can't work while using those.

I have basically cleansed ALL chemicals out of my body at this point. Which is why I chose pot to help with the insomnia and relaxation (After much research and I mean A LOT). I am choosing to be on a more natural path, combine with the acetyl l carentine i'm living with the pain, and am able to focus and work.

I don't know, the Dr. didn't give medication options. she said lets wait, and see. I suspect that they might be prescribed this time round. It's been a year since the last MRI. I suspect a barrage of tests and things to come.

as for the spasms, they are under control now. And my sleep cycle has improved to the point where I work a full 8-9hr day and am relatively fine fatigue wise. It doesn't kick in until the last hour and when i get home i'm ready for bed.

I have to run, but I will try to clean up some of my in-coherence later. and explain more if needed.

[jensequitur]

They talk a lot about the side effects of the different DMDs, and whether there would be any point in taking them.  I'm on the fence.  What I will say is that if you qualify for financial assistance, then take advantage of it and take a DMD to slow your progression.  If you don't, they can be quite expensive.

You mentioned waking up with spasms.  Now, I've been taking Baclofen for years, and it was doing a good job of controlling those spasms.  Recently, I've begun to titrate down from Baclofen, and I've found that Zanaflex also does a really good job of controlling spasms - and you don't have to maintain a daily dosage.  So talk to your doctor about medication for that.  It may be that you can take one a night, which should control the spasms all night.

[Lulu54]

Those bonus finds are always special - glad it helped you to finish the story here.

You had me hooked with the "Short, not overly knowledgeable, Liar." summation.  What a stretch you have been through and certainly encountered more than one inept medical staff member.  

You write - "As for medications, We both agreed that though medications are good for preventative maintenance, the side effects would outweigh any benefits in my current stage."

I 'm not sure which medication you are writing about - if you are talking about a DMD for the probable MS, I hope it isn't too late for you to give one or more a try.  Although they don't cure MS, they definitely have been proven to be effective for most of us in slowing the progression of MS. The side effects of any and all of these disease modifying drugs are far outweighed by the benefits.  Perhaps I have misunderstood what you wrote about that ..... :-)

As for monitoring for research, I would highly doubt that because it would be unethical to do so without your informed consent.  I believe all corners of the world know understand that patients should know what is being studied with their bodies.

You've written a great history and I hope you will take it with you to the next doctor appointment - it provides lots of clues that should be heard.

be well, Lulu

[bear2764]

Hi Jen,

I will continue to be a patient at the MS clinic at UBC hospital in Vancouver. I didn't mention the Neuro experiences I have had but I promise you they have been terrible.

My first DX was literally 10:30pm on the 20th of june 2007, It was given to me by a student attending telling me I indeed Had MS and that no other disease or problem would cause what the neuro saw / described. I got home that night at midnight, it was just in time to wish myself a happy 25th birthday. I tell you, it wasn't very happy.

After that they forwarded me to this MS specialist (I swear he is a crazy), he sent me for an MRI told me my brain was clear, and I have transverse myelitis. He literally shoved me out his door and told me I'd "get better" and fully recover within 6-8 months. I needed no medication, or anything. I must of been lying about all my symptoms right?

that was in Nov 2007, Jan 2008 I was in the hospital with the worst stomach pain (all across my mid section) it felt like someone was squeezing my guts out thought the pours. CT with Contrast, showed some aggravated lymph-nodes. they gave me some narcotic pain killers (percocet) some antibiotics (which did nothing, i stopped taking them after two days), and sent me on my way. (I'm thinking that this was the hug, and they didn't catch it at the time.) the pain lasted about a week and was gone.

May 2008 the migraines and fatigue started. I couldn't get out of bed, the numbness came back. I asked my GP for a new neuro ad told her that i was suspected to have ms so she sent me to a hospital with a gp referral note. From there I waited another 6 months. and saw a Neuro at the calgary MS research clinic. I can sum her up in about five words: Short, not overly knowledgeable, Liar.

1) she gave me amatripline - anti-depressent used to treat nerve pain - result: nearly crashed my car because even though taken before bed and sleeping for about 12 hours I was falling asleep behind the wheel on my way to work. I never told my wife, but I almost crashed on three different occasions.

2) after another MRI she said brain was clear, and that there appeared to be a new spot near the T1 (actually it's really more relatively close to the brain stem), but it was most likely missed by the other MRI and nothing to worry about.

3) she put me on Lyrica after i told her about the the sleeping behind the wheel thing. the stuff is garbage and made me zombie like. When we were changing my script and stuff I had actually walked into her office in crutches, as I had twisted an ankle so bad (walking into my office at work, i tripped on flat carpet, how the hell did i pull off that one!?!?!?!) i had torn a ligament. I also re-injured my ankle twice on top of the original injury. (klutz much??)

November 2010 a year later I called her office (I had moved provinces) and I asked for a referral to an office here. The referral went to the local MS clinic and they said that i would be better treated at the University hospital and forwarded me there.

I saw the new neuro in may of 2011 and again in Sept for a follow up after a new MRI. she has determined that I no longer have any reflexes in my arms and the legs are dull. i'm clear from optic neuritis, suffer from all the same symptoms of MS. but her dx is probable. she did confirm that i definitely have some sort of autoimmune disease, but apparently the lesions are not typical of MS (since when is ANYTHING about MS Typical???) and do not match normal patterns. My current Neurologist is Dr. Virginia Devonshire.(http://www.msanswers.ca/ExpertBio.aspx?L=2&EID=22 / http://www.ctv.ca/CTVNews/Health/20070213/benign_ms_070213/ / http://www.canada.com/topics/bodyandhealth/story.html?id=4c235728-f15c-49ac-9ee5-c72538e7969e ).

I'm very happy with her thus far. I think i'm being monitored for research  ,  which is fine. but i'm still in Limbo. I've already accepted that MS will be in my life, weather its just symptoms of current damage(which is what she thinks), RRMS, or the debilitating Progressive MS i'm just looking for that validation i guess we all seek.

At this point, i haven't had any blood work, lumbar puncture or any other tests. when i go this time, I will be asking for tests if she doesn't automatically send me for any.

As for medications, We both agreed that though medications are good for preventative maintenance, the side effects would outweigh any benefits in my current stage. I'm eager to see what a new MRI will show hopefully I will no longer be in the dark. Right now, I've been self medicating with Acetyl - L Carnitine. It's an amino acid available over the counter in the US and newly available over the counter in Canada, but you can't buy it yet and I'm completely out. It has been helping my cognitive issues over the last 6 months, however I ran out and they are now very frustrating and VERY noticeable to me and everyone else to the point where i think my job may be in jeopardy. I work in IT, it's taking me longer to solve problems and i don't think my boss understands that it's something i can't fix or control. I've very easily distracted, my wife calls it the "oh look a bird!" symptom.

The only other thing that i do to control symptoms is for sleeping, for 4 years i haven't been able to sleep properly and fatigue is a constant problem. I asked my GP for a pot script (compassion card) and he granted my wish.  I usually go to bed at night and get tingling all over, electrical shocks that make me move and experience limb jumps or full body jumps, then at around 2am 2-3 times a week i wake up screaming with charlie horses in both calves. Its so bad i don't have the strength to lift my foot up against the cramp, thankfully my wife hurries over to massage out the cramps and work my feet for me against the contraction.

My wife and I have been together since 2006, and married in 2008. she is definitely my rock through this even when i switch moods (unintentionally) and become irritated with her. She is very supportive of the pot use. I've been with her for 6 years, she is a massage therapist (us only, not in Canada :( ) she has NEVER been able to massage my back without me wincing at the slightest touch, until two days ago after i picked up the script. She could feel a definite difference with the muscle spasticity, it was relaxation heaven. It was also the first night i slept through in 4 years, the proper rest has reduced my fatigue by about 90%.

I've been writing for two hours and a a bonus found and extra 500mg Acetyl L in my desk and i feel 100% better (i took this about the beginning of the last paragraph, I'm not going to edit anything above so I can read back later and see the differences on coherence ;) ). lets see how many mistakes I don't make today.

[Lulu54]

hi and welcome.  My thought is when you go back to the MS clinic, if the doctor is not willing to call this definitely MS I would ask to be treated for Clinically Isolated Syndrome (CIS) and still receive an MS drug.  Perhaps that won't be necessary, though.  It sounds like you have been in limbo long enough and I hope you get some answers.

You did a great job outlining your story and the patient history is the most important part of this MS diagnosis trek.

good luck,
L

[jensequitur]

Bear, all this sounds very familiar.  I have a few lesions in the brain, and some in the spinal cord, but I had several years of language issues, including word-finding problems, aphasia, dyslexia, and more...  I couldn't type right for a year.  And I still don't know sometimes if I've used the wrong word.

I believe that the MRI is a diagnostic tool only - not a way to find what's wrong with your brain.  You're going to have problems that aren't on the MRI, and your MRI will indicate problems that you might not be having right now.  So don't concentrate on the MRI too much.  If your neuro insists that you can't be having those problems because you have no lesions in that area, you'll know to look for a different neuro.

However, you're with an MS research clinic, so I think you're in good hands.  Are they going to treat your MS if you're diagnosed, or will you be referred to a regular specialist?

[bear2764]

wow now I read though this, i'm going to take my sweet time typing this comment. I forgot to add that all of this started at age 24 and I am now turing 30 this month.