Getting a diagnosis of multiple sclerosis! What People with MS have to say!


The objective of this multiple sclerosis blog is to provide our readers with a space where they can multiple sclerosis awareness orangediscuss all the issues surrounding the diagnosis of multiple sclerosis.

On one of PatientTalk.Org’s groups on Facebook called Multiple Sclerosis Talk (https://www.facebook.com/MultipleSclerosisTalk) the subject of diagnosis with MS and the road to that diagnosis is one of the most common topics discussed.

For example, a recent question on diagnosis showed that our members have widely different experiences in terms of length of time it takes to get a diagnosis.  One reader shared:

“Oh it only took 7 years of fighting!”

On the other hand another said:

“For me it was pretty easy….symptoms, MRI, and lumbar puncture and it was done! I have a wonderful Neuro doc that sent me to a Neuro doc that specializes in MS. Nobody gave me the runaround.”

Concerningly another reader mentioned:

“My mum was told it was all in her head for a good while. Was so frustrating!!”

So in three short comments we can see that there is a wide range of issues and concerns for people getting diagnosed with multiple sclerosis.  We thought that the best way of kick-starting a discussion would be to suggest a few questions.  Please do feel free to contribute anything you feel is of interest to other readers.

  • Firstly, how long did it take you to get diagnosed with multiple sclerosis from the first symptoms to the final diagnosis?
  • Did you have an MRI or Lumbar Puncture for a final multiple sclerosis diagnosis?  Can you describe the process and its effects?
  • Did you feel supported and understood by the healthcare professionals around you during the diagnostic process?
  • What were you concerns about multiple sclerosis prior to diagnosis?
  • What advice would you want to give to a person in the process of being diagnosed with multiple sclerosis?

Thanks very much in advance and we look forward to reading your comments.


85 comments
Jamie OConnor
Jamie OConnor

I was diagnosed in 2011, my eye doctor told me I had optic neuritis and sent me to a neurologist. The neurologist had me do an mri then lumbar puncture to confirm. Then I was told (by the worst neurologist ever)  that there was no type of long term treatment and I should under no circumstances google MS because it would just scare me unnecessarily! I opted a year and a half later to have a second opinion, and thank God I did, my MS is rather aggressive and that year + being on no treatment was very detrimental to my overall health! I hope this urges all readers to get a second opinion, and find the best long term treatment for them.

marco420
marco420

Does anyone have these symptoms?ulnar nerve numb and pain full in both hands,shock sensations when you cough,sneeze or move your head toward your chest.Numb in both legs up to mid back. I have not been diagnosed with anything yet.Had a CT scan so far,negative results.Looking for answers!

DannyHernandez1
DannyHernandez1

took from 2009 to 2012 to get my dx but i believe i had it since i was 14 my back likes to spamall the time for no reason and legs would hurt to the point i couldn't stand on them still get this till this day and suffer from mentalhealth my whole life since then to then at 18 i felt i almost couldn't open my mouth but just like before it came and left within a day but in 2009 i got a pin sized hole in my lung so they did a ct scan so i asked them to check my brain cuz my mom and sis had ms then they found 5-6lesions so next was a neurologist first one did a spinal tap came back positive for ms dx but since i haven't lost the movement of a limb for 48 hours or and lesion in the spots conclusive for ms he wouldn't diagnose me second doc said i was crazy to go see a therapist before i comeback for further testing 3rd doc believed i had it but wouldn't diagnose me 4th doc was an ms person either with the ms society do knew her stuff by the time i got to get a new symptom arose black dots and lines in one eye that wouldn't leave in avweek they grow intomy other eye so she ordered aanother mri found one of my lessons moved intomy corpuscalosme she knew then i had an me episode and gave me my diagnoses that's my story was hell

Roxannestanbridge
Roxannestanbridge

I am just starting an anti inflammatory diet.....watch this space

sjanderson23
sjanderson23

@Roxannestanbridge I started working in kitchens when I was 16 and next month I am forty.  I was diagnosed with ataxia from ms 3.5 years ago.  I do a number of things that are anti-inflammatory.  Taking a turmeric pill is the best thing and avoiding all dairy(but I just like cheese so much).. You can eat a bunch of Indian food also, it has turmeric.  I have also used coconut milk in a number of Indian food sauces for years which is not dairy.  I do not know if ginger is anti-inflammatory, it is good for you though.  It is a great anti-nauseator and I think it is also an anti-oxidant. 

kathrynad
kathrynad

My diagnosis completely blinded me! I was diagnosed on May 2002 at the age of 39 by my 1st Neurologist. I had been having tingling,/numbness off & on for about 5 yes, however, i'd had a prior spinal injury at age 22 (fractured C7 -fused at C6&7- and fractures of T 5&6), but no paralysis:). I assumed my neuro symptoms were due to my spinal injury. But, I was also a work-a-holic & finally went to my to my Neurologist approx 5yrs after my 1st symptoms started. After some testing, he told me he thought my symptoms might be due to MS, but he would need to confirm it with a brain MRI (he had already done my cervical & thoracic MRI's), & a lumbar phnction. WHAT! I didn't even know what MS was. So I went home & started searching MS on the net, then I became almost hysterical. I then started connecting the dots . I had been enduring other MS symptoms such as clumsiness, vertigo, exhaustion& the most scary for me were the cognitive changes I'd been struggling with, but didn't know why. Both the lumbar puncture & MRI were positive for MS. He then started me on Copaxone. I know my story might be a little unusual to the more typical process of it taking yrs. for a diagnosis, & I feel very grateful for an immediate answer. My doc was a godsend & then helped me when I needed permanent disability, I was approved the 1st time (also had a lawyer),

Julia45
Julia45

My legs used to lock up on me especially walking up hills.

Falling over an dropping things more

Pins & needles an numbness in my feet

My legs feel like I've got a pair of soaking wet jeans on and numb from the waist down

All as my doc used to say that my muscles didn't work and I've got trapped nerves in my legs and the bottom of my spine.

I was finally diagnosed with MS last Jan 2012 by a locom doctor who rushed me to hospital when I. Couldn't walk

MarilynRoberts
MarilynRoberts

@Julia45 Now look up the top 5 hospitals in the country that specialize in MS.  Yeah the wait will be months but well worth it.

Now what MS does - when our bodies get a foreign virus (everything is airborne now that winter wants in), like everyone else, we develop antiviruses.  Problem is that our bodies don't know when to stop making antiviruses, which then attack our myelin (coating like on electric wires).  This can happen to any nerve in our body.  Optic Neuritis is common, and spinal attacks are more common than anyone wants to know.  Sounds like the dr you saw doesn't know this.  Look for those top 5, you'll be happier!

~Marilyn

Julia45
Julia45

It took my doctors 30 years to diagnose me

LoriMontcalm
LoriMontcalm

From my first symptom to actual diagnosis was 7 years.  It was me who said, "I want you to investigate MS".  After years of being being treated like a depressed attention seeking nut job.  Of course I was nuts and depressed because I knew something was wrong with me and I wasn't being taken seriously.  That journey started almost twenty three years ago and I am not taking any MS drugs with the exception of two Baclofen.  I find Magnesium far more effective in treating the spasms than any pharma drug has ever been.  I was given somatasensory tests, visual evoked potentials and an MRI....two MRI's one and a half years apart which is when I got the diagnosis.  I am using a wheelchair although I can weight bear, walk still with a walker and much difficulty.

LoriMontcalm
LoriMontcalm

@lauriefharrison 

If your gut is telling you something please listen to it.  No body knows your body like you do.  My sincere wishes that all turns out well for you.  Although being diagnosed with MS was not what I wanted, it has not been the end of the world.   True my life has taken an unexpected path, but I am still enjoying life, I am involved in my community, and have lots of loving friends.

kathie1026
kathie1026

@LoriMontcalm  I was just diagnosed with "Conversion Disorder."  It's a mental problem.  It's when one has a mental problem but don't deal with it properly and your body turns it into physical symptoms (e.g. symptoms exactly like MS).

However, I feel deep in the pit of my stomach that it's not my nerves or depression.  Sure I've had some issues, like my father recently passing, but that will make you have a "flair up." From what I understand, everyone's MS is different, so the way my symptoms are presenting themselves might be different from everyone else.  MS has way more symptoms than Conversion Disorder, of which I've experienced.  There's only a few that have stayed with me permanently. After dad passed I had a new symptom that lasted exactly 24 hrs. and then went away and I haven't seen it since.  

LoriMontcalm
LoriMontcalm

@kathie1026 @LoriMontcalm Hi Kathie.  The reason I was treated for depression was because the doctors thought my symptoms were manifestations of the depression.  I have lived a life of stress, alcoholic mother, physically abusive father.  They also had amazingly wonderful qualities.  I am the youngest of ten children in a blended family.  I just kept getting more depressed when I was not taken seriously.  I knew there was something else wrong, I could feel a change in my body.  I knew exactly when it started.  I kept going away with my sails further deflated only to head back to the doctor to complain some more.  Keep a journal about how you feel each day/week, symptoms, even vague ones...if you think it's something more, keep at it.  It took seven years for me.  

MarilynRoberts
MarilynRoberts

@kathie1026 @LoriMontcalm 

Do yourself the favor of looking up the top 5 MS hospitals/doctors in the country, here on the web.  Find the closest to you, and make an appointment.  Have all MRIs and other medical records in your hands/sent before your visit.  Slightly obnoxious but well worth the wait.  You want real answers and going to the best in the nation is heading in the right direction.  

Good luck to you!  May your lingering questions be answered!

OH and happy holidays!

lauriefharrison
lauriefharrison

Thank you for posting this! I really needed to read this today after just having a doctor try to convince me I'm depressed. Although I know that can be a possibility, I said the same thing to him. I know something is wrong. Didn't do any good. He didn't he do any lab work like I asked. But deep inside, I know I have to keep pushing, because my gut tells me that it's more than depression.. Thank you for sharing your courage.

MarilynRoberts
MarilynRoberts

My neuro switched me to Tecfidera.  After 20 years of stabbing myself I was thrilled to pieces!  However by the time I hit week 3 Tec gave me the runs for 10 days.  My nuero said to take trhe weekend off from Tec and try starting again Monday.  Weekend was great.  By Monday afternoon I was back in the bathroom with the runs.  He asked me if I wanted to try Gilenya or Aubagio.  I looked up the side effects and decided I like my hair/vision/blood pressure too much to try Gilenya, and Aubagio also has its own nasty side effects.  Thanks I have enough problems, where medications that are adding more problems doesn't seem logical.  Until the medical community figures out how to make those side effects less damaging, I'll stay with Beta Seron.  Just my opinion!

BethFanninHall
BethFanninHall

My first symptoms were not wanting anything to touch my skin, but I didn't relate this to anything so ignored it. It was probably a year & 1.2 later my right leg was hurting & dragging, thought I had pinched nerve. I went to the chiropractor & in a couple of weeks was fine. In Nov of 1979, I woke up one morning & one side of my face was paralyzed. I went to an ENT, who said it looked like bell's palsy except I had no feeling & that didn't go along with it. He referred me to a neuro & the ENT must have had some suspicion. I went to neuro & he immediately said he wanted me to go to the hospital for some test. No one ever told me what they were looking for, so of course I'm thinking the worst & my husband is scared, also. After running several test & doing spinal tap the dr walked into my room & said "you have Multiple Sclerosis". I didn't even know what MS was, so I was relieved to have a diagnosis, little did I know what was down the road. So much has changed in diagnosing & treating MS today from 30 years ago. I finally got wise enough that I realized that I had a Risen Savior, Jesus Chirst, & He became my main source of medicine, because all I had for many years was steroids & I couldn't live on them forever. I am now mostly using power & or wheel chair to get around, but I can still walk some & take care of myself. I feel truly blessed to be in my condition after living with MS for years. Sorry I rambled on, but I wish all of you that have been newly diagnosed or are being tested the very best with all the new meds there is today that you will be able to live a long life without to many complications. 

Sarahfm83
Sarahfm83

May 2013 first episode - optic neuritis, facial paralysis and tingling tongue went to A&E

Diagnosis within in June after MRI and seeing optician

Had another bad relapse in July 2013 course of oral steroids

Started Avonex

Just in middle of another relapse started Oct back on steroids and starting Gilenya soon.

I didn't feel supported at the start but the more aggressive it's got the more support and guidance I have.

It's frightening scary and I'm still learning but I'm determined to not lets this take over my life but I just need to get better first.

From being out going to spending a lot of time sat in and scared of going out incase I get exhausted and can't make it back home is my biggest fear.

BethFanninHall
BethFanninHall

@Sarahfm83 

I have heard good reports about Gilenya, hope you get it soon & it gets you stabilized. You should ask your doctor to prescribe you something for fatigue.  

TammyValentyPenksa
TammyValentyPenksa

I was diagnosed 20 years ago. I am now 47. I had 2 young children at the time.  I woke up one morning and my vision was doubled.  My family doctor sent me for a cat scan then from there I was sent to a neurologist and for a MRI.  Lesions. MS. It was a scary time.  I just wanted it to be something that could be cured.  I was put on Betaseron.  I didn't last long.  I didn't like giving myself a shot or having someone give it to me.  I quit taking any medication for MS.  I know that probably wasn't a good move but so far so good.  I have been in remission pretty much since my first symptom went away.  I thank God.  I would like to  find a new neurologist and maybe get on the new oral therapy.  I know even though I have been pretty much symptom free for nearly 20 years that could disappear in the blink of an eye.  I live with this always right there in the front of my mind, but I don't let it stop  me.  I do zumba and I work so hopefully I can keep this up for another 20 plus years without incidence. 

MarilynRoberts
MarilynRoberts

I have 2 points to make about MS::

1 - I have noticed that by changing my diet to vegan that my MS has shut up!  Even in RRMS which should be in a remission stage, while I was eating animal antibiotics and growth steroids, I had "flickers".  Not full flares, but subtle hints of flares.  I mean, the changes weren't noticeable when I only gave up all pork.  I had to go completely veg'an.

2 - Like many other people I have applied for SSDI.  Granted I was lucky and was awarded.  However what happened to me with that decision can happen to anyone that applies.  My credit rating was dropped to 000.  I've seen on FaceBook that some patients still have credit scores, but I personally was reduced to zero.  Its a good question to ask your attorney!

Good luck to all!  We just keep fighting the good fight!

OH and Happy Halloween!!!

~Marilyn

 msprincess86
msprincess86

Last week on October 23, 2013 I was diagnosed with MS. I had an MRI done in May (due to eye pain) on my brain, my PCP said it was nothing, just stress. It faded away, but 3 weeks ago I began seeing a bit blurry in my right eye. I went to urgent care to see what was going on. He then referred me to see a doctor that specializes in ophthalmology. From there I took an eye/field test, then off to get an MRI on the brain.. again. This time around they did find lesions. I was on an IV treatment for three days to get my vision back clearly in my right eye. I am now on a steroid for 5 days and I am doing great! I will be seeing a vision doctor tomorrow to follow up to see how much of my vision I have gained back. I have a spinal tap coming next week, and i just pray and hope that no lesions are found. I am a bit nervous about it.. BUT I am a fighter!

MarilynRoberts
MarilynRoberts

@ msprincess86 

Optic Nueritis, welcome to the club!  I am missing the right half of my vision from my right eye.  I probably could drive if I had to but not at night and not on highways!  Nope, I stay home all the time.  Steroids keep me awake, where I force myself to sleep a couple of hours a day when I'm on them.  Plus I gain weight from them.  I don't know if its the steroids themselves or maybe just because I'm awake all the time and bored!  OH and they make me break out like I was in puberty again.  I'm so glad my RRMS has hit that long quiet remission stage!

 msprincess86
msprincess86

I really hope they caught this at an early stage where i can stay in a healthy remission! I hope the steroids dont to anything crazy to my body.. Although i only have to take them for 4 more days. I'll feel better once i'm in a routine of normal meds i will be taking daily. :)

MarilynRoberts
MarilynRoberts

@ msprincess86 Thankfully those steroids are prescribed for about a week,  But my house is extra clean that week!  Boredom makes you do wacky stuff in the middle of the night!  Feel better!

 msprincess86
msprincess86

If you don't mind me asking.. How long have you now been diagnosed with MS and are you able to live a normal healthy life? What medications are you currently on & did it take them a while to find he correct medication that would do you well? Sorry for all the questions! :) i'm new to this obviously! Ha

MarilynRoberts
MarilynRoberts

@ msprincess86

Hi!

If I could only get a neurologist to sign a letter saying the metal used to reconstruct my hip was what gave me MS, I'd be on a Caribbean beach having this e-conversation!

The POS car I was driving to work on a Wednesday morning got wrapped around a palm tree. (yes, Florida!) I have almost 12 inches of metal bolting my hip together with 5 pins. That happened in 1990.

(continued...)

MarilynRoberts
MarilynRoberts

@ msprincess86

I quit FaceBook this past week. I found myself on it for 4 and 5 hours a day. Nope, this house could use some more attention anyway! I wish there was a way to give you my email address in a private message, because I'd rather not post it publicly!

Anyway, take care! OH and Happy Halloween!! BOO!

Always,

Marilyn

srboe1959
srboe1959

@BethFanninHall @MarilynRoberts @ msprincess86  

Beth, Steroids keep me awake, too, and I only resort to them when symptoms are really bad. They shouldn't be used often anyway because long-term use is not good for you, especially your bones. They should only be used as a smack-down to curb the damaging effects that an attack has on your nervous system -- it can prevent further damage that inflammation causes on both the myelin and the nerves the myelin protects. So though it has that rotten side-effect of wakefulness, it's impact on curbing further inflammatory damage is pretty important. HOWEVER, it needs to be used as that smack-down drug. During quiet periods it's a really good idea to do what you can to keep systemic inflammation down -- through diet and supplementation if you can. I take flax seed oil, Vitamin D, E, and stay away from the foods I know cause me trouble like gluten and dairy. A consult with a Naturopath or a nutritionist who is "in the know" about inflammatory-causing foods can be a real help.

 msprincess86
msprincess86

@MarilynRoberts @ msprincess86

Hi Marilyn, So i remember what you said about the steroid! It made you breakout like crazy.. okay so it did the same to me! Like BAD! Any tricks you have so i can get rid of this ASAP?!

duph07
duph07

In the spring of '99 at 19, the right side of my body was numb. I went to my family doctor. He said, in short, I had 1 of 2 things. Shingles or MS. This was on a Friday so he said that if I didn't break out by Monday I would be referred to a neurologist. By monday, I didn't break out. 2 weeks later I saw a neurologist. After !ONE! MRI, he didn't think it was MS. Because of car accidents I've been in he believed it was a pinched nerve. He ordered another MRI. The tequ scan was 1/3 to low, blessing, and caught something. So MRI number 3 was ordered along with a CT. Contrast was included. 10 leasons on the brain and 1 on the spinal cord. Doctor still thought accidents. In the fall of '99 I got a new neurologist. Yes, another MRI and CT both with contrast. On January 24, 2000 I was diagnosed with MS. I've been a volunteer with the NMSS since '97 so I've known about MS. The doctor thought I'd break apart with the diagnosis but having an answer was a releaf. *chicken pox (x2)-brothers*Rosetta '90*mono-4months '95

lauriefharrison
lauriefharrison

I am dealing with something similar now. After 1 MRI, the neurologist said I didn't have MS. Offered no further testing of any kind. Even though at my visit I presented with noticable drooping of the right side of my face, slurred speech, loss of balance, and a long list of feelings down my arms and legs that couldn't explain. Plus a history of Mono. I couldn't belive it. I'm currently looking for a new neurologist so I can start over next month when my new insurance takes over.

duph07
duph07

In the spring of '99 at 19, the right side of my body was numb. I went to my family doctor. He said, in short, I had 1 of 2 things. Shingles orMS.

mexiicoon
mexiicoon

I had some symptoms about 6-8 months before my actual diagnosis. My PCP at first told me it was a vitamin D deficiency, put me on vitamin D and the numbness in my left foot went away within about 2 weeks. Then I noticed numbness in both of my legs from the waist down but worked that whole week. Then that Saturday I noticed the numbness creeping up and decided to have it checked out. After 5 MRI's 2 sets of X-rays, spinal tap and a week stay in the hospital with steroid treatment I was diagnosed with MS. I am still waiting for my appt. with my neurologist (Oct. 31st) to see what treatment he will suggest. I have been back to work for about a week and just find that I tire out more easily than I used to. Since I work in the hospital I have found my co-workers to be extremely supportive and they give me pointers and tips on things to do and not do.

MarilynRoberts
MarilynRoberts

Slightly controversial, but my MS shut up when I becam vegan.  No more animal antibiotics nor growth steroids in my system!  In theory this is a free country, but that worked for me!  OH and being vegan part-time is not the answer!

SidGilbert
SidGilbert

I didn't start out with classic optic neuritis. I lost vision completely in my right eye. This was initially put down to a vascular cause like a retinal stroke or a detached retina. So I was tested for vascular problems first. Then Temporal Arteritis, the treatment for that masks the symptoms of MS so I had to be weaned off before I could be handed over to the Neurologists at the Walton Centre in Liverpool. Once they had me on their case load diagnosis was pretty quick. I went from possible MS to LP and MRI and diagnosis in less than a year. The delays were all due to the testing for strokes etc. My first diagnosis was SPMS. 

I didn't really know very much about MS other than that it wasn't a death sentence. My GP asked me how I would feel and I said I really didn't know but pretty Pee'd off. It was only later that I had to choose not to be a sufferer.

I am lucky as on the Isle of Man we have an excellent support network from the visiting Neurologist from the Walton, through a very, very good MS Nurse at the main hospital and back to our GPs. They are all happy to advise anything from CCSVI to LDN, vit D, fatigue, incontinence, the whole MS package.

My advice would be find out as much as you can. Ask questions every time you meet an expert or go for a appointment or check up. Learn about it, learn to accommodate it and learn to live with it. Remember not to let the elephant in the room get between you and the light source.

LindseyMayKentish
LindseyMayKentish

Hello everyone, I was diagnosed 3 years ago just after my mum passed away, which in itself was stressful enough,  It has been  well over 20 years the dr's are now saying that I have suffered from MS, but the GP took no notice of all my symptoms because i have four children 3 with severe mental impairments/autism and also a husband who is wheelchair bound due to a degenerative spinal disease......so they always put all my symptoms down to stress.......even thou I would be bed bound for days on end and have to walk using a frame or crutches and in the end a scooter..  Finally I lost eh use of my legs and went completley numb  from the waist down and was bladder & bowel incontinent, they sent me to A & E as they thought I had a trapped nerve in the spine.  This MRI showed everything was normal....so then I was refered to neurology, but before getting there I had already said to my husband I think I have MS, on the basis that my nan had MS and on reflection I could remember mum telling me how it affeted her and could see my difficulties in what I was being told!  so by the time I actually got the diagnosis there was not angry more relieved that after years of being told all my pain and mobility issues were stress I finally had a answer.   Since then thou I have gone through a bad time feeling worthless and depression.... i do get a bit down having to take so many pills everyday just to enable me to get out of bed!!!  then there is the copaxone injections to remember and the dropping of things, and falling over like your drunk, and people making comments this I find a bit distressing even after 3 years! Does anyone else still struggle with emotions years after diagnosis?  I wish all of you a lovely weekend x x


mikeys mam
mikeys mam

Hi, I too have a disabled child. And for years now I have had all these symtomes that the gp has been putting down to stress but I'm finally seeing neuro now starting tests for ms, iv been tested for so many other things I'm totally fed up of them brushing me off, reading ur post gives me hope thank you xx

Lois fullbrook
Lois fullbrook

well in october lasy year i got really ill could not walk properly the dr said i was a drunk, then i went numb in my mouth and face then i got optic nuritis, but ive had problems for years i lost the hearing in my right ear dr said its a virus ill get it back after 3 momnths that was 11 years ago, then my left hand went numb 9 years ago then i got torso numbness was meant to see someone but was to ill and missed the  apoinment then i got a pain in my shoulder that then teamed up with facial numbness then of course the optic nuritis luckly it came same time as i was due to see nuro had mi i see a lot of damage but have two marks on my brain that has caused it all to be right sided so off to nuro he sais ms but then had a contrast done again he said ms had lp it was clear so have to now go to the expert who wrote to nuro saying he looked at scans and they are dealing with typical disease what ever that mean so find out on the 8th i hope oh also been diagnosed with stenosis via my cervicle mri :( sorry its long and rambled but this is a first blog post for me lol good luck to everyone i hope no one feels as confused as me xx

AlesaPowersArmstrong
AlesaPowersArmstrong

Had my first stem cell treatment last Dec. Amazing results. Getting my second next month. I was skeptical about it at first just like everyone is but I said what do I have to lose? They are mine mixed with my healthy blood so nothing foreign is going into my body, so I jumped in with both feet and I am so glad that I did. I have had MS for 32 years and my stem cells have always been there for me. SO MY ADVICE........USE THEM!!

MarilynRoberts
MarilynRoberts

@AlesaPowersArmstrong I am thrilled to pieces that GWB is long gone from the White House!!  That A-hole made stem cell research and use into a religious battle that he wouldn't budge on.  Thank you President Obama!

Sarahfm83
Sarahfm83

Do you have a blog? I'm guessing this is in the USA are you on a trial basis ? I'm newly diagnoised but it's quite aggressive Relapsing and remitting and im keen on combating it.

stemmlers
stemmlers

1 month from the time I fell down some steps followed by a 3 day hospital stay ,,,

MRIs (full spinal and brain plus previous even 10+ years ago of double vision) NO spinal (Will NOT let someone toy with my spine,,,neuro said MRI with contrast is good enough with today's technology.  I wouldn't allow it no matter... )

Now on Copaxone and legs and brain disconnect in high heat and humidity.   

Concerns (Would I end up in a wheel chair)  Luckily not...

Advice ( Learn to mange it.  Don't push past your limits too far but also don't become a couch potato....  Stay active but also stay mobile.  Its not like an athlete where no pain no gain.  When pain, back down, cool down and then if you wish, go at it again.... One step at a time.  Core temps are the enemy...)





MarilynRoberts
MarilynRoberts

@stemmlers I also had a very bad experience with a spinal tap.  Apparently I stood up too quickly and I had a severe migraine for 3 days.  I refuse any more of those.  Yet an MRI is just them taking pictures with a very loud camera.  Contrast is just a kind of dye they use to see more detail than they get from standard MRI.  Yeah they lay you on a board and slide you into what looks like a something you'd swear was a pizza oven!  They take the first set of pictures, pull you out, inject contrast, then push you back in for the same set of pictures again.  Nothing horrible.

 msprincess86
msprincess86

@MarilynRoberts @stemmlers  aHhH Yes i have had the MRI with contract done before it's not the MRI i am worried about it's more the the spinal tap that is making me SO SO FRIGHTENED! I have heard bad stories, but i am hoping that everything will go smooth and that the pain wont last for too long!

MarilynRoberts
MarilynRoberts

@ msprincess86 @MarilynRoberts @stemmlers Personally I told my neuro many years ago that I REFUSE to have any more spinal taps.  Look at all you want to on my MRI.  However I learned with spinal taps that if you sit up in the first 15 minutes afterward, that will give you a severe migraine for DAYS afterwards!  But good luck to you!