When we are newly diagnosed... - My MSAA Community

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When we are newly diagnosed...

greaterexp profile image
51 Replies

I've reflected at times about the way I was handed my diagnosis. I have read here about your experiences, too, which often mirror my own.

How was your diagnosis disclosed to you? Was it from your PCP (primary care provider) or a neurologist? Do you feel you were given at least adequate information and resources in order to begin to learn about this chronic disease? What do you wish had been handled differently?


51 Replies
leapsnbounds profile image

I had contacted my primary doctor who recommended a Neurologis. After my visit I had an MRI and he said I had MS. I can appreciate that the process was moving very quickly as I have heard the process may not move quickly for everyone. There is not a thing that I would have changed about the help that I received. Everyone was pretty amazing.

greaterexp profile image
greaterexp in reply to leapsnbounds

That's wonderful! I wish that weren't the exception!

4fishylady profile image

My diagnosis came in a really strange way.....I was sent to #1 Neuro for sleep issues, which over 1 1/2 yrs he did multiple tests, including a sleep study overnight and brain MRI. At one point, he mentioned that the MRI showed the possibility of MS, but he dismissed that by saying he would do another MRI in a year, (which he never did). He gave me gabapentin and temazepam for sleep, which helped with the sleep issues. I had the "burning feet" problem, and when I asked about that he decided to send me to a Podiatrist. That doctor found nothing that would cause it, so he said "I'm going to send you to a Neurologist." I told him I had just come from one! He said that he was going to send me to one who "would find out exactly what's causing my burning feet." So, #2 Neuro questioned some of the things #1 Neuro had said to me, and did another MRI, and a spinal tap then came up with the diagnosis of MS. He also did nerve conduction studies which showed polyneuropathy as the probable cause of the burning feet. #2 Neuro is an excellent diagnostician, young, good looking, with a Swedish accent, and always gives me a hug! P. S. I never went back to #1!

kycmary profile image
kycmary in reply to 4fishylady

I wouldn't go back to that one either. Mary

greaterexp profile image
greaterexp in reply to 4fishylady

I'm sorry it took awhile to get your diagnosis, but it sounds like you have an excellent neurologist now. And hugs! Wow!

RoseySawyer profile image

My first neurologist (that didn't know much about MS) gave me printed out info (after the testing) and said "you have MS". That was it. The diagnosis was quick. I started my symptoms on October 5, 2015 and on October 29, 2015 is when I got my diagnosis and on November 10, 2015 I fell down in my bathroom paralyzed. Now I have a new neurologist that specializes in MS and I'm walking and doing much much better. I have my days of muscle weakness but nothing I can't handle. 🙂♥️🌹

carolek572 profile image

I was being seen by a neurologist at the request of my PCP because I was 'complaining' of many issues. Upon seeing that neuro, he did all the neuro tests available but not the mri. He said that I had received my latest mri in 2004 (it was now 2006), and he didn't feel that it was necessary. Well, later that year, I had an attack, and I went back to my PCP, and she ordered the mri. She saw something and told me if it was okay to send the films to a neuro to confirm what she found. I told her that I had been seeing a neuro, at her suggestion, and told her that he didn't want to do a mri. Well, when I went back to the neuro for his opinion, the first thing that he said was, "What prompted your PCP to order a mri for you?" Unbelievable. Then, he gave me all the pamphlets/literature for the DMTs that were available, and told me to choose. Needless to say, I never went back to him, and sought another neuro. I was too stunned to know what to do. Keep Smiling :-D

My Pcp finally ordered an MRI (head only) said ms and referred me to see a Neurologist....still waiting for that appointment, next month.....Pcp ordered another mri for spine this time. Going tomorrow morning.

Peruzzot profile image

I went to see a nurse practitioner about the vertigo and lack of hand control. She said that I had a massive ear infection in both ears and that might be the cause of the vertigo but that didn't explain my hands. She sent me to get tested for MS. At that point the only thing I knew about MS was from a commercial I had seen as a kid. A woman was walking and talking normally, then she was blind folded, the blind fold came off, then she was gagged, then the gag came off and then finally she was chained to a chair. The rest of that day was spent trying to find out what MS was exactly. After all the initial testing wad done I was told that I had "probable MS". For the next almost 5 years the doctors were trying to prove the nurse wrong only to prove her right. Everyone kept demanding to know why she immediately jumped to the conclusion of MS since I have no known family history of it and didn't know I knew anyone with it. I never got a chance to ask her because she moved back to the USA before I could ask her. But I'm grateful she made that immediate conclusion because she got me going in the right direction for an early diagnosis. The neurologist who finally gave me a definitive answer finally was the 3rd I had seen but she specialized in brain trauma not MS. I had to initially teach her about MS. I give her credit though she worked hard to get smart on MS as quickly as possible to help not only me but other MS patients as well. She initially hemmed and jawed and tried beating around the bush to give me an answer finally to "What the hell is wrong with me?" I cut her off and said "I have MS don't I?" She just looked at me kind of stunned and then simply said "Yes." Then she got me started on avonex that I responded very badly to. My 4th neurologist stopped the avonex and put me on tecfidera 8 months later. The 4th neurologist specializes in MS. He's still my neurologist almost 3 years later.

leapsnbounds profile image
leapsnbounds in reply to Peruzzot

Many people early on when I was diagnosed with MS said that someone in my family must have MS too. I'm the first person in my family to have it. I have found through my own research years ago that it is possible that none of the members in your family could have it.

Cutefreckles72 profile image
Cutefreckles72 in reply to leapsnbounds

I believe it can be genetic. My grandmother had 12 children only one child had MS and this one had 3 children and they all have MS. My mother doesn't have MS and she was one of the 12.

leapsnbounds profile image
leapsnbounds in reply to Cutefreckles72

Oh wow! I'm so happy that you shared this. Thank you! I enjoy when I am able to learn more and more about MS.

Cutefreckles72 profile image
Cutefreckles72 in reply to leapsnbounds

For me, it has been a real learning and health experience.

greaterexp profile image
greaterexp in reply to Cutefreckles72

The Menzies Institute has such a wonderful course on MS that is free. They rerun it periodically. They discuss the topic about the causes of MS and state that there does seem to be a genetic factor, but is certainly not the main factor for everyone. The real cause is unknown at this point.


Cutefreckles72 profile image

At first, My PCP did the MRI of my spine and I guess the results wasn't what she thought. Next she sent me to a Neuro and that's when he did the MRI of my brain and spinal cord. And on July 31st last year, he told me it was my brain that was causing my problems. I told him "my brain is good" and that's when he said I had MS and I started crying. After talking with family members who had MS already, (didn't know) I started researching and learning more about it. My Neuro is working with me.

falalalala profile image

It was first suggested to me that I might have MS by a teacher.

I thought the numbness and hug was from a neck injury so I went to my chiro.

After some visits he diagnosed me with MS and I went to a neurologist who did a spinal tap, motor skills test.

I was relieved to have an answer.

As for the neuro, she prescribed the standard of care which was Copaxone.

That was a bad thing for me.

My husband and I have since approached it from a diet & supplement angle, geared to bring down inflammation.

I am not "cured" by any means and do have less than stellar days but I do feel PDG for the most part.

I did not feel especially confident with the neuro's help.Then again, I check up on every single thing a doctor has told me to do anyway.Particularly prescribed medications.

That is when I feel better about my health.

I was diagnosed 35 years ago, before DMT's. The first neurologist I saw spoke only to my husband and after a 10 minute exam said it's either MS or a spinal column tumor. I went back to my PCP and got another referral. Much nicer doctor. I had an MRI on the first machine in Rochester, NY. Talk about loud!! No earplugs or music and looong! But it was free. Many more tests, including one where the doctor didn't think the machine was working, so he hooked himself up and jumped and said,"Oh yeah! It's working!" I think that was the evoked potentials. Hospitalized for IV steroids, LP and electromyleogram. Only treatment I had for 14 years was solumedrol when I had an exacerbation. I worked in a hospital at the time so I went to the medical library and read everything they had on MS. I was 25 and scared to death and very depressed. But I decided to ignore it and get on with my life. So I did.

OKgal profile image

I started with my PCP on 10/8/2014, telling him I was so incredibly dizzy and nothing I tried would calm it down. Truly, I thought I had an ear infection. He thought it was possible and agreed to refer to an ENT, but also said I should have a MRI. I balked due to cost, but relented and had a brain MRI on 10/21/2014. I scheduled the ENT visit to follow right after, which was intentional. I let the ENT nurse know I had just completed the MRI, so she got the records sent immediately for the doctor to review. He came in, looked in my ears, and said they were fine. He then read with me the radiologist report, carefully showing me where I had probable MS. I stared at the report, then stared more at it, then started sniffling. I'm a wimp. He then said I need a neurologist and was going into his office to immediately make a referral to one his sister-in-law sees. The neurologist MA called the next day (10/22) and said there's a cancellation I could take for 10/23, if I wanted it. I took it and went through the battery of tests and he laid down the MS hammer on me. I argued with him that he's WRONG! I still agreed to start therapy. It was definitely a surreal time for me.

The good was he was adamant his diagnosis was accurate. He patiently waited me out for more than a year of my arguing with him that he was wrong. "Nothing you say will make me change my mind." was his statement to me every time. Then he would take his tuning sensation fork and plop it on the numb spot on my ankle every time I argued with him. It worked as I shut up then.

The not so good is I don't believe he really went over the MRI very well with me. He did show me, but just spun my brain image around rapid fire. I've accepted it, as I have the discs and can look myself anyway. I've since pushed him to get spine images too. Good thing I did, because they showed more damage that needs to be tracked. Otherwise, we would still be with just brain imaging only.

So all in all my diagnosis was fast. I did get the confirming second opinion at our MS center an hour and a half away. I stay with my current neuro because it works with my schedule.

4fishylady profile image

We all have such very different stories! I do not know of anyone in my family to ever have had MS, but have had these same symptoms for at least 45 years! Dizziness or that weird foggy sensation was my primary symptom all those years ago, and still comes and goes just as it did then. My leg strength has become more into the picture now, but not very bad.

That was a wonderful, insightful question you asked! We have all learned a few things, haven't we?

greaterexp profile image
greaterexp in reply to 4fishylady

We all pretty much have to take a crash course when we get the diagnosis. I've learned so much from everyone here. That Menzies Institute class was terrific. I think I should take it again to refresh my memory.

What saddens me, besides anyone getting the diagnosis at all, is how badly it is handled sometimes. We are often given little or no information, even from neurologists. When we are handed a diagnosis like this, information can be so empowering.

4fishylady profile image
4fishylady in reply to greaterexp

Actually, my sweet and kind Neuro, did not tell me much. I just went online and read everything I could get my eyes on, and then the library, books on MS, then the MS sites online and here, my friends.

kdali profile image

My Opthomologist said he was ordering the MRI to confirm MS, and he was fairly certain of it. I appreciated zero looks of pity on his face, because I remember that moment well. He asked me a year later if he did ok giving me the bad news 🤣

My husband gave me the news when he read the MRI, we took the disc home after my scan (he’s had some training).

I got the report at work from medical records 2 days later, and it was shocking to read what the neurorad thought even though I knew already. It was worse than hubs could see. Yay 🤦‍♀️

Then came the official diagnosis the next week when we met my neuro. She was upbeat, said it was doable with meds; and said “pregnancy is great for MS, lets get you pregnant” when I asked about our infertility status. The last thing she said before I left was “I see patients with MS that do marathons”. No pity, and a lot of confidence.

Bonus: my fertility specialist the next week said he had plenty of MS moms on Copaxone like me. Also no pity, but sorry, and confident that everything would be ok.

I can’t imagine going through all this with any other way. My doctors are exceptional practitioners, but also wonderful, caring people. 🥰🥰🥰🥰 I’ve been super lucky this time around!

BigMar7 profile image

It took me 3 years to get diagnosed almost 20 years ago. I remember dropping things like papers, car keys and feeling dizzy. My regular PCP was not available so the doctor in his place ordered an MRI. I think this was after going to him for a period of time, I would get better, I really can’t remember. Anyway because that MRI showed atrophy on the brain he referred me to a neurologist, who because of my age had to rule out everything under the sun. In the meantime I had been doing every medical test available and lots of reading on the internet and finally changed neuro doc. I a spinal tap and that was the last test I did

rjoneslaw profile image

my diagnosis was given to my after I had an mri done my rheumatologist told me I had ms and I should see a neurologist. the neurologist confirmed I had ms, he conducted the test they do in the office and gave a list of drugs I could take. I didn't like his attitude and him in general so I went back to my rheumatologist and told him about my experience and he recommended a neuro to me. That neuro conducted more test to actually confirm I had ms. Which I did. He told me it was my choice if I wanted to take meds or not , he never pushed but stated he would suggest that I would do so but I choose not to.

I was given info on ms and I did my own research as well. I made a chart of the meds with their side effects, pros, and cons.

six years later I started having symptoms but I ignored them until it was too late because I was in denial and because of anther reason trying to hold on to a man I'm no loner with.

If I could have handled it differently I would have taken the med when I was symptom free and let go of the man.

I can only move forward and just tell other of my mistake so they don't do the same and be thankful for being on O and slowly seeing improvements

kycmary profile image

It was a Neuro & he said probable MS & we would wait to see what happened. I would still like to slap him into next month, 26 yrs later. I understand he quit being a Neurologist & went into pain management. Mary

mm1527mm profile image

I was told in er likely ms, then by neurologist when admitted and confirned by ms specialist. I was horrified traumatized devastated etc. I wish i were given more information that it is not a death sentence etc.

Christina49 profile image

My diagnosis was revealed after 2 years of other conditions and symptoms. Prior to these conditions I have always been in good health. Sinusitis was my biggest complaint! I graduated my Masters in December 2017 and noticed my legs dragging.. The left leg was dragging more. By January I saw my primary who sent me for MRI of brain and cervical.. It was here I found out I had cervical compression that was affecting my ability to walk, and the surgeon saw more.

He was so determined for everyone to see what he saw. He was God Sent! I knew from this surgeon before they diagnosed me 10 months later, I had MS.

goatgal profile image

The neurologist called me and told me on the phone. Told me to make an appointment to see her. My daughter came with me and can verify the following. I was told there was no drug that would be prescribed because I was 70. I asked if there were alternatives to taking drugs: the neurologist told us that I could buy a crystal that contained an eternal flame, wear copper bracelets, go on a lettuce/lemon juice/peanut butter diet. or buy a foot bath detoxifier. My daughter wanted to report her to the agencies that supervise doctors, I didn't because I thought, because the doctor had been trained in Bulgaria, t I had used the wrong word and failed to express my thoughts clearly (I was thinking, minerals, acupuncture, physical therapy). I also knew that reporting was not a simple matter; I preferred just walking away. She was a good diagnostician (ordered all the right tests) but. I never went back.

It was quite a shock.

Ethyrum profile image

I feel fortunate that my diagnosis only took a little over two months. However, I had to go to two different primary care physicians because my first one wasn’t taking me seriously. The second one ordered an MRI right away after examining me. I’ll never forget when he shared the results of my MRI over the phone with me while I was at work. Then, I had to go teach two college classes an hour after learning this news. Certainly a day I’ll never forget. (in defense of my doctor, we had talked about the possibility of ms in his office and he didn’t want me to have to wait several days to get in for an appointment to learn the results of the MRI).

pamgarner profile image

thank you for the opportunity to tell our own stories,great question!2012 my gp sent me for an mri for my back which he believed that what it was coming from.It show spinal stenosis at neck and tail,so he sent me to back surgeon,he listen and said that is not what was causing my problems.so he did 2 more mri's,head and back,then sent me to neuorologist.I did not care for this dr.after he immedialty told me "he doesn't do disability"wasn't even talking about that,I was trying to keep working!He did another mri head and neck and spinial tap,it was positive,went for a 2nd opinion and he is a wonderful neuro,i stayed.that was 7 years ago,the rest is history.I was doing my own research at that time and I told my hubby"I think I have ms."he said "don't say that out loud, it will make it come true".God love him,he probably just hoping it was not true:)

Juleigh21 profile image

My diagnosis came from an orthopedic surgeon who finally got a cervical MRI approved after it was denied twice by other docs. Took months of insurance denials before the MRI was approved🙄

2littletime profile image

I thought I was going blind.(a fog was moving across my entire field of vision). Ophthalmologist told my pcp that it was most likely vascular so he sent me for mri. He called me with results & was very matter of fact. Referred to neuro, more tests, 5 days IV solumedrol, mega doses of prednisone. Vision returned (not completely) 10 months later relapsed & then started on Beta-Seron & have been on it ever since. (20 years). I've changed doctors a few times, but now finally have a wonderful team. (Pcp, neuro, rheumatologist, opthalmologist, neuro-opthalmologist, retina specialist) & I couldn't be happier. It's been quite a ride!

greaterexp profile image

My own story: I sought my PCP's opinion when I began having numbness and tingling in my left arm after having other symptoms. I suspected MS even then. He sent me for an MRI, which confirmed MS. I was called for an appointment to learn the results of the testing, but was told I'd be seeing the nurse practitioner. At first she said the test results were equivocal, so I had to press her for the actual results. She reluctantly told me I had MS. She said that people don't die from MS, but immediately after making that statement, she said I should get my affairs in order. I told her I was sorry she had to be the one to tell me the diagnosis, for the poor thing was obviously very uncomfortable. I was told I would get a referral to a neurologist, but was given no information, resources, and no offer of treatment for the relapse that, at its worst, left me unable to walk. The neurologist appointment would be over 3 months away, though I'm grateful that I was able to get in to see a new neurologist. I had already started looking for information online, but we all know that while there is a lot of information on the web, there is also a ton of misinformation.

I'm not usually a complainer, and I am glad that I finally got an answer to all my symptoms. But I think the medical community needs to do a better job of offering information and resources, as well as ways to find support. I'm not sure how we can change that. I know I was given little information about MS in nursing school, though there isn't time to go in depth into every disease known to mankind. Sometimes I think the general medical community doesn't know much about MS and doesn't understand how to help their patients.

MarkUpnorth profile image

I got no info back in the dark ages. I was given my diagnosis on my birthday laying in a hospital bed where a nuerolgist referred by my second Opthalmolsist on my second course of optic neuritis was trying to reboot my immune system to fix this problem with my eyes again? Why? My eye problem wasn't really the eyes? But nerves?.... Wasn't sure why. But was told I needed to be in a sterile environment for the treatment.? After about 1/2 way thru my procedure, along with many other tests, including an MRI?, the best thing that I could get, happened by coincidence while there. My hospital roommate turned out to be someone who just had a quadruple bypass surgery, and he laid in his bed with his chest still cracked open, closed only by sheets draped over, so they could irrigate the chest cavity very regularly to fight a massive infection. So, as I mentioned before in earlier post(s), THAT put my diagnosis in perspective forever. "It could be worse." " Much worse." M.S., yeah I heard of it, did I know what it was? No. Something to do with muscles and nerves??? (Only semi right) But I would get more info shortly thereafter at my next office visit. This was prior to the days of, "okay google...." I remember a few years later taking a class not even computer related. They explained there was this thing called a browser. Though primative and hard to use, it may be able to help you to find things via this thing called the internet using a computer? This was groundbreaking? Tried it..... That was the beginning! Yeah...it was almost useless back then.

So...at the office visit, post my hospital stay, already with an appointment with a second neurologist because "M.S. was a serious thing" I heard from family & others.

I took it as well because it can't be as bad as my hospital roommate's situation! And the last person I knew who had a quadruple bypass in Mexico, only lasted a few years. Always kept that It Can Be Worse Attitude! Walking right into a wall in public, banging my forehead onto the brick wall..."It could be worse!?!" Optic neuritis again and again and again...."It could be worse". Relapse item #103, or was it 1xx? Need to check the list?

(P.S. He walked out of the hospital with me. If he could do that, I could do this M.S. thing?) Now,...everything you ever wanted to know, at your fingertips! This forum too! One thing to read this is this, another to hear from people who lived through that, or are living with it now. Besides, it feels good to help someone with what you struggled through before.

TheWallBumper profile image

I had many wrong diagnoses before finding the correct. First diagnosis was just plain post pregnancy hormones. Well 3 years later and I was thinking these dang hormones... so I went to my PCP. She sent me to a rheumatologist where he believed it to be sjogrens syndrome. Again problems worsened again so they added on fibromyalgia (So far the only diagnosis I still have). Two years after that I had an episode where I thought I had a stroke. ER neurologist diagnosed me as having a TIA stroke and put me on plavix and anyone who has taken this drug before knows the issues with bruising. I was only in my early 30s and I had to explain that my husband was not hurting me. Finally my PCP took me off it upon my request. Eleven months after that ER visit was my diagnosis for MS after 8 days of tests. Yes...... it took 8 days to confirm it. With the symptoms I was having I had 4 different type doctors getting in on the money. I had a neurologist (which it took the neurologist 4 pokes to get spinal fluid....ouch), rheumatologist, cardiologist, and infectious disease doctor. Every day I was there each doctor wanted their own lab work, scans, and even nurses. I had so much lab work I looked like a pin cushion and so many scans I was glowing. Finally I was able to get home knowing MS was the winner in that raffle. Win... Lose... I'm not sure which one describes it. Unfortunately where I lived at the time didn't have a neurologist that specialized in MS unless i wanted to drive an hour so i just saw the neurologist that was walking distance from my work and his answer was always steroids. I do love steroids cause that is the only time i feel great but over time it has made my teeth weak and they dont seem to work anymore. Thankfully I moved after my divorce and live 20 minutes away from a neurologist that only works with MS patients. I love everyone in the office. I still don't feel great but I have a lot of bad years to get them back up to being good again.

BeckyAnn1966 profile image

I was put in the hospital because they thought I had had a stroke. I kept telling them No my left arm quit working . After 2 days of tests and needles the Neurologist walked in said Hi Good News.. No Stroke but you have MS. Do you have any questions for me?

Lol ..No ..Boy the questions I have now 6 years later.

Plus every DMT meds they have tried me on I have had very BAD reactions too.

So I am without a DMT and wondering where I go from here.

Thank you for letting me blow here.

TheWallBumper profile image

Now "misinformation" has been used in these conversations. Now I have something to say about that and it doesn't have anything to do with MS but it still makes you think. I had a lot of stomach issues when i was in my late teens and early 20s. I had several testing before i finally had a doctor take me serious and diagnosed it being my gall bladder was the issue but before I found that wonderful doctor I was in a gastrointestinal doctors office and there was a flyer with the title "So, your dying of colon cancer" I can never forget that flyer. First someone wrote that and thought it was a good title and then someone else approved to get it printed. My to my next story that makes me wonder. I was having a lot of sinus problems so I had the sinus surgery to help it. During the surgery they found a mass in my left cheek and sent out to biopsy. I had a follow up appointment one week later on a Monday. I received a phone call the Friday before and they said they had an opening right after lunch and was seeing if I wanted to come in earlier than Monday. Well I was free and Monday was tight so I agreed. I had no idea that I would be diagnosed with maxillary sinus cancer and directly down stairs to start radiation right away. I was alone and in shock and didnt know what was really happening till I started driving home. I had to pull over and cry. That phone call I received could of been done differently. I would of had someone else with me if I knew the doctor wanted to talk to me.

jorrell profile image

I'll do everyone a favor and kind of bullet list it.

1: First symptoms in 1998, family Dr. kept saying that my balance was off and I was exhausted because I was under too much stress and not getting enough sleep. That included off and on double vision. For 10 years he kept telling me too much stress, not enough sleep.

2: We moved and shortly after that my right eye was off by 28 degrees, so went to the eye Dr. He assumed 6th cranial nerve palsy and watched me over 6 months during which time the DV got a little better.

3: In 2010 I got a new family doc. During the first appt, he asked me if I had any concerns, I told him about the double vision, exhaustion, and not being able to walk straight. He immediately had his nurse start calling neurologists trying to find one ASAP. Next day, I saw the Neuro, standard motion evaluation and a blood draw to rule out syphilis. Then sent me out for an MRI, had that a week later. She said you might have MS but we need to do a spinal tap. After that, she wasn't sure I had MS but started me on Copaxone and set up an appt. with a true MS specialis.

4:I meet the specialist, she did the standard neuro checks, saw the problems. Then she told me that the MRI showed lesions in the right brain places and in my C spine. She followed that with your spinal tap showed all four markers for MS. Then she came out and told me 100% that I had MS, I cried of joy! Now I knew what was causing the problems!

5: Went back to the original neurologist and an MRI showed lesion growths active, so she switched me to Tecfidera and a week later she was off to a new job. So the Dr. who was her boss took over my care, a superb MS neurologist. He had a stroke and was no longer able to practice.

6:After another 6 mos or so I got back in to see the MS specialist that originally confirmed MS. I was with her for 3 years until she changed hospitals after a 6 month hiatus due to non compete. So I switched to her replacement, he is working out okay and put me on Ocrevus.

So, for now I will stay with him but am getting into the cue to see the MS specialist that diagnonsed me in the first place.

7:Please note that I have been in remission for a full 9 years. With that in my hat, the nightmare to diagnosis was okay.

bxrmom profile image

After my opthamologist couldn't figure out why I had sudden blurred vision and I had to argue with him that it was not the antidepressant that I had been taking for years, he sent me for an mri. When results came back, I never received info on what MS was. I was told to pick a neurologist that I wanted to see. After more testing and results came back, I was told that I had ms and that there were different medications to treat it. I was given info on the various treatments and 2 weeks to decide which treatment I wanted to start on. I went home in tears and had to read what I could on ms and the various injections and had finally chosen copaxone. It was a big whirl wind that I wish could have been more educational.


Midnight-Blue profile image

when I was I was “informed” I had MS I basically told my Neurologist that he was wrong! (Has both a MRI & Spinal Tap.) (No way in hell! (Considering that I had gone there for a sharp pain in my neck & my legs that my PC said needed support hose because I was having difficulty walking!) Did I know anything about MS then? Nope! Did that Neurologist explain anything to me about MS then? Nope! Then 8/2017 I made an appointment with him (He’s on my Insurance.) and ask him “What the hell is wrong with my legs?” He said that he told me in 2015! I also had to do my own research as he said very little about it! And, as I’ve said before now I care very little about it!

ahrogers profile image

I had an MRI 6 days after my neurology consult with a follow scheduled the following day. The afternoon on the day of my MRI I got a message through my medical record portal that there was an update to my record. When I logged in my PCP had added MS to my diagnosis list.

My first reaction was relief since I knew MS was the best possibility based on my symptoms and neuro exam. Later I started thinking it wasn't good practice for a doctor to add a diagnosis to someone's chart before telling them.

Thankfully I was already meeting with the neurologist the next day to discuss next steps and treatment option. Had an LP, visual evoked potential and steroids the following week. Started Gilenya soon thereafter.

Having read others stories I feel blessed I was diagnosed within a week of seeing the neurologist. My neuro spent a good amount of time going over all of the treatment options too.

hairbrain4 profile image

I originally went to my PCP for a hormone check. I felt as if I was losing my mind. I had brain fog and couldn't remember things or recall a person's name etc. That morning I woke up with half of my face and tongue numb. I thought I just had a pinched nerve in my neck. I didn't know at the time that facial nerves were cranial nerves ( I skipped anatomy in school). He sent me for an MRI. It came back consistent with MS and showed 9 active leisons. I was thankful it wasn't a brain tumor. No one in my family has ever been diagnosed with MS. Looking back I have probably had it since I was a teen. I had a lot of fatigue especially in the summer after spending the day at the beach. In my early 20's I had numb spots on the balls of my feet. The doctor said it was probably a bruise since he couldn't find anything wrong. In my early 40's I was diagnosed with Chronic Fatigue Syndrome. I was starting to have cog fog then but didn't know what it was. From my teens until I was diagnosed I suffered from depression. I never really had any symptoms that stood out all at once until my face was numb.

After the MRI my PCP sent me to an MS specialist in our area. He told me it probably was MS but wanted to do other testing to make sure since there are other diseases that mimic MS. After an EVR, LP and EEG he sent me to the Opthomologist to look at the optic nerve. He then diagnosed MS on my 50th birthday. Everything went pretty smooth, it took less than 2 months to get the diagnosis. I feel I was lucky to have had a PCP that sent me for the MRI and to an MS specialist.

cookie12669 profile image

It was different for me. I had symptoms for 40 years with doctors PCP and neurologists telling me that I was just getting older. My sister had MS and I would tell these docs that. The answer was the same you are getting older. I finally went to Mayo Clinic Jacksonville FL with the latest MRIs. I saw for myself the MS lesions on my brain. I lived in a small town Springfield IL and the doc were stupid. Joke: what do they call a dooctor that finished at the bottom of his/her class? DR.

mrsmike9 profile image

I had fallen down stairs a couple times in 2014 and fell through a table at my mom's house when I was helping to bring in her groceries. That fall when I fell off my bike when suddenly my legs just stopped working and I broke my arm in 4 days, it was time to see what was up. The Monday after my fall I was at an orthopedic surgeon. Tuesday I just happened to have a check up with my GP. He ordered an MRI. He, not his nurse, called me and said it appears I MIGHT have MS and sent me to a neurologist. I saw a "regular" neurologist who had seen me several years earlier when I had 2 grand mal seizures back to back. I loved him. Such a nice man. He did a LP and the next week when I saw him he sat across the room from me with such a sad look on his face and told me gently that I have MS. He said he was going to refer me to a colleague of his who specialized in MS. Before he left the room he gave me a hug. I wish I still had him. My neuro is very knowledgeable but not very personable. Of course I haven't seen him for several years. I always see his NP. I'd like to see him to ask him some specific questions. When I ask the NP things about, for instance, grey matter, she has no clue. I'm sure I see her as I'm fairly stable. I feel badly for those who have had to struggle for answers as mine was pretty straightforward. When I was told I felt relief because I knew why I kept falling. Two days later I spent the day in bed crying. Got that out of my system and have gone on.

Boxofchocolates profile image

I began losing feeling in my left foot and leg; thought I had bad shoes...but each day I tried to wear a different pair and the pins & needles and numb feeling wouldn't go away. Eventually after weeks of feeling like I was walking on a vibrating floor I started seeing a chiropractor because I was sure I had just "pulled something." Anyway, after months in his care he told me that I needed to go to a doctor to discuss what else might be going on. That doctor actually listened and said my symptoms sounded "neurological" and sent me for a brain MRI. Shocked the heck out of me! He called a few days later to tell me about the lesions in the brain and to refer me to a neurologist. He told me over the phone that I had MS, and not to worry to much because I could "live with it."

The one thing I would have done differently is educate myself before letting them do certain tests. The spinal tap was a disaster and I ended up at the emergency room the next day needing a blood patch due to leaking spinal fluid. No one had told me to stay laying flat after the procedure and sadly the dumb-dumbs who did the spinal tap just came in 10 minutes later and told me to get up and get dressed and go home.

Overall I am thankful that the doctors were willing to take the time and listen and get to the bottom of what was going on.

twooldcrows profile image

my neurologist told me ...no big deal ...he had said he thought it was MS but would know for sure with an MRI done then was the sure ....

greaterexp profile image
greaterexp in reply to twooldcrows

We’re you given information about the disease and treatments?

twooldcrows profile image
twooldcrows in reply to greaterexp

yes i was ...he sent home three types of shots and said to pick which one i wan't to try that fit my life ...i hated shots but said that was all he knew of ...the main reason i didn't stay with him was he would compare anything i would ask about that was going on in my life with the MS he would compare it to his mom that had had it and would usually say that it wasn't the MS so i heard about the doctor that had did her training in MS so i traded doctors and have been with her ever since and i love her she agreed with me about what i had asked him about in the beginning and she said it was because of the MS the problems i was having ...she left his office and started her own office and it has really grown ...she listens and with answer the questions and if not sure looks it up right there and if can't find anything on it will get back to me ...her help in the office are just as good as she is ...one of the girls was at the other office and came with her...they both are so great ...have helped me so many times when i needed answers ...she also was the one that would offer things coming down the pipe line when i would ask about getting away from the shots that i hated so bad....great doctor all the way around...

greaterexp profile image
greaterexp in reply to twooldcrows

That is wonderful. I wish it weren't so rare!

twooldcrows profile image

every time i go to the office they have the new books about MS and some others that they treat ...

elaineinqueens profile image

My neurologist called me to tell me my brain MRI showed I had MS and he wanted me to see a specialist in the neurology group. At the moment he called, my husband, plumber and contractor were all in my bathroom talking about our upcoming bathroom remodel. I had been in there with them when I received the phone call. I had to go back into the bathroom and act like it was all fine and continue to talk about bathtubs, tiles and the remodel. When they finally left, my husband said he knew immediately that something was wrong when I had come back into the bathroom. I told him what the neurologist said and completely broke down.

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