Share your experience with possible MS diagnosis. Get the conversation started.
Share your experience with possible MS diagnosis. Get the conversation started.
I am in limbo…and that’s where I have been for the last 17 months. I was initially diagnosed with CIS in February 2012 at 33 about one week after I woke up and couldn’t see well out of my left eye. I initially thought it was exhaustion – maybe it was the late nights while writing my dissertation? Maybe it was an eye infection from those eyelash extensions I had over the holidays – they looked so good! Maybe it was something else?
I went to work and school and tried to ignore it. But having reduced vision made me feel dizzy and disoriented. I just didn’t feel “right” and it was really distracting. As a student in a healthcare profession, I knew the importance of preventative healthcare – but it took me until day 7 to finally see my doctor. The thought of it being unilateral crossed my mind as a concern. I worried of what it might be. At the appointment, I told my doctor that I couldn’t afford an MRI, which of course I had to have. I was really scared.
I went for so many appointments that week, including the MRI. A resident called me on a Saturday night with the news that I had two brain lesions and optic neuritis. I felt like the floor fell out from under me. But she was very reassuring and took the time to talk me through the diagnosis.
I spent the rest of the weekend researching as much as I could online – in between crying spells with my roommate and my boyfriend (now husband). I tried to ignore regular websites (since they were scary!). In my training I was told to tell patients to be cautious of what they might see online about their diagnosis. It was hard for me to follow my own advice and not rely on the internet too much. I found research studies describing the effectiveness of the use of DMTs. I learned about options from the research, and through numerous appointments and phone calls with my doctor and neurologist. Everyone was so helpful in answering my questions. It felt weird to be on the other side of the healthcare system.
As a student, I applied for financial aid through the hospital – which was extremely helpful in allowing me to pay for the earlier bills. I found that a combination of learning about MS and advocating for my own care helped me to come to terms with having CIS. Talking to my close friends and family about it also made me feel better. I’d like to think that maybe having this experience has made me a better healthcare provider too, since now I have a slight understanding of what some of my patients experience.
Currently, I am on Avonex, hoping that the disease doesn’t progress too soon. The side effects of Avonex are not so nice, but every time I do an injection I tell myself that I’m doing this to stay well and be strong. I feel lucky to be able to have this medication as (perhaps) a “preventative” measure. I have learned a lot this year, and I think it has made me a stronger and more understanding person. I think for now I am happy with being in limbo.
I am not sure what is wrong with me. I have numbness in my hands feet and face. I have severe lower to middle back pain that is constant and double vision. My doctor is befuddled and does not know what to do next to identify what is causing it. I stubmled upon this site and I have a lot of the symptoms of MS. My wife notices more that I do, she says I am having a harder time concentrating on things and my speech is different. She also noticed I am stumbling more often. I saw a neurologist and had a full body EMG. He said the EMG was normal. What do I do next?
I can only imagine how hard it must be to not know what is happening. It sounds like you are dealing with a lot right now. Is there a way you can do more testing and/or see a different neurologist for a second opinion? I think the only thing you can do is keep seeing your doctor and continue to describe what you are experiencing (even if you think different symptoms might not be related) and keep asking questions until you get some definite answers. Good luck and hang in there!
Thank you for replying. what sort of tests should I ask for and what questions should I ask?
I can’t really offer “medical” advice, but what I have learned through my own experience is that establishing a diagnosis of MS requires time. I think a lot of patients are referred for an MRI so their doctor can examine patterns of demyelination in the brain. Sometimes patients might undergo a couple of MRIs spaced over months (as was the case with me) or years. It seems to me that if you have numbness or tingling then I would be asking questions to figure out what is causing it. Have you had a back injury? Have you taken any new medications? Do you have a history of stroke in your family? I’m gathering that MS is a diagnosis of exclusion and doctors have to rule out what else it might be before they can tell it’s MS.
Do you have access to a large hospital with an MS team? If so, I might go there since they have expertise in MS and they might be able to point you in the direction of someone who can help. These are just ideas….I’m sure that others who participate in this forum might have other advice. I’m new to this area but I am slowly learning! I think it just helps to know you’re not alone.
Thank you for your help. It is comforting to know you are out there and are willing to help. I did not injure my back. When I read the MS Hug article it sounded exactly like what I feel except mine is in my back not my abbs.
I am comfortable with recieving a diagnosis of any kind because I can not start dealing with whatever is wrong with me until I have a name for it. My wife is fearing ALS and other life threatening diseases. I just want validation that I am not crazy and there is a real “thing” wrong with me.
Thank you again
Hi, I came upon this site while researching MS (since 3 of my dr.’s recently suggested that I may “possibly” have MS). Although about 6 mo. ago one of my dr.’s said “looks like RSD”. I have been suffering “flare ups at about a monthly rate since 2006. Recently (the past 2 yrs.)about 4-5 times a month I suddenly lose the use of my arms and legs (abnormal reflexes, Extreme weakness, severe tremors) It is absolutely awful. The main theme that seems to have played out throughout this whole thing though is that it has continued to change and I have developed new or different symptoms. In 2006 it started as what I thought to be sciatica (Severe) down my right leg. You know the intense burning (feels like the skin is burnt)over the yrs. it moved into my left leg, then right arm, rt. face and scalp, then left arm, left face and scalp. Then I developed what I refer to as ice joints..sooo very cold and extremely painful. Ice cold extremities and extreme sensitivity to cold. Now it’s burning of the soles of my feet and burning of the palms of my hands (usually starts at night). I am just seeking some support and as always trying to dig for answers. So tired of seeing dr’s. I have 5 children who I also have to make time for and have been putting off going back to my neuro. I plan to make another appt. around next week. I have had MRI’s done in 2009 w/o contrast that showed no lesions. Not brave enough for spinal tap Yet…(I’ve had bad experiences with spinals, while having C-sections).I appreciate any insight or support. 🙂
I just need a answer,I am sure I have MS the Doctors have said different things and One is MD-CMT the other is carpal tunnel and something like that in feet too,in my neck it is genitive Arthritis. Everything is something different! I am tried of feeling like a yo yo All of the things i go through are symptoms of MS,one Doctor said to me it doesn’t matter if it is MD or MS cause I am on the same Meds that he would give! to me that is wrong Please Help
I can’t imagine what you are going through. I hope that you have have been able to get some information from your most recent doctor’s appointment. I can only imagine the number of appointments you have had to go through. They can be exhausting too!
I just wanted to send a quick note to let you know that you have support! Wishing you well.
I can completely identify feeling like a yo-yo….one day is good, the next, not so much. Sometimes it’s shooting pain in a limb, and sometimes extreme fatigue….the lack of predictability is difficult and challenging. Just try and stay strong and keep asking questions! I hope they figure it out soon. Good luck!
By Terri Heyne
I, too, have been diagnosed with CIS, or “some sort of demylienating disease”, end quote. My first neurologist, an MS specialist, put me on Betaseron in 2009 after almost every test you can think of including a PET scan. My disease started out with a lesion at the T2 level in my spinal cord, along with ALL of the classic MS symptoms, including the MS hug. As a result of the lesion, which has since disappeared, I was left with numbness on the left side of my body, and extreme sensitivity from my left hip to my left foot. My current neurologist, who is more of a sleep doctor, is sending me to a specialist in Omaha, NE because she does not think that I have MS. My original neuro told me I would never be able to work again and was instrumental in helping me obtain my disability. Lately I have been dealing with more fatigue, more cognitive dysfunction, more trouble with my balance (I broke my ankle in three places back in November; had to have surgery}. My Betaseron does not seem to be helping much lately. I’m wondering if anyone diagnosed with CIS developed MS later on? I feel like I probably have the progressive form because it manifested later in life.
By Kim Dolce Moderator
Yes, a good number of CIS patients are diagnosed with MS later on. Clinically Isolated Syndrome (CIS) is often diagnosed when a patient meets most of the MS diagnostic criteria but have only had one attack. An MS diagnosis requires that a patient have at least two attacks or events and develop new lesions in another area of the brain or spinal cord. When MS is strongly suspected, the CIS diagnosis allows the neurologist to start treating the patient with MS disease-modifying drugs early on in the hopes of preventing the MS from progressing.
If your symptoms have worsened, it’s important that you contact your neuro for an exam. You might be in a flare and not realize it. If so, a course of steroids can stabilize you, cut short the duration of the flare and possibly return you to baseline.
Whether you have the progressive form is not easy for doctors to determine. They would have to follow your clinical symptoms over time and take a series of MRIs. Progressive forms generally have to do with a lack of inflammation (white matter lesions on the MRI) and a predominance of axonal death (black holes on the MRI) and a steady decline without flares. Moreover, developing MS later in life might up your chances of having a progressive course, but it isn’t a given. I had my first attack at age 41 and was dx’d with the relapsing form, which I still have at age 56.
If you feel that Betaseron is no longer protecting you, contact your neuro for a medication review. Our MS disease-modifying drugs do not keep us from having flares or progressing, they only slow down the process and decrease the number of flares. So, this change while on Betaseron does not discount an MS diagnosis.
The disappearance of a lesion also does not rule out MS. Your continuing symptoms and disabilities prove there is permanent damage to the Central Nervous System, damage that could be the result of MS, and MRIs are limited as to their ability to detect all the damage that is there.
I hope you have consulted your neurologist about your new issues. Best of luck.
Any women here had/have Mirena birth control?
Honestly, I am fed up. I can’t get a straight answer about the direction in which my testing is headed. My neurologist (which is fantastic, best in my area, great with epilepsy patients) has seen me in February this year for a consult and in March for nerve conduction study. After an MRI of my cervical spine w/o contrast as well as blood tests, I was scheduled for a F/U in August. A follow up appointment for what, I don’t know. Then last week I was told he is no longer accepting the insurance I carry, so my appointment was canceled. Meanwhile, my lovely symptoms march on…not having a care that I am slowly drowning in the pool of “undiagnosed” with symptoms of an illness that not one person can predict day to day, moment to moment. My employer thinks I’m being “difficult”, my coworkers treating me like I’m invisible, and my own mother telling me that she “won’t allow” me to have MS. What to do? I’ve read about every article on MS…. and let me say, (I’m not looking to self-diagnose or panick…it’s informational in searching for the cause of my symptoms) my description of health and symptoms (including the past) are almost identical to the way that so many “diagnosed with MS for years” describe their past and current issues. Even the post above talking about sensitivity to cold “ice joints”. That’s just one itty bitty commonality. My husband even jokes that someone cracked the password on my journal.
At this point, my MRI showed no lesions, my blood work suggests that I do not have another autoimmune disease, not lupus, not blood cancer, nor vitamin deficiency or diabetes. In the wake of being out of work for 3+ weeks (couldn’t use my hands and fatigue and electricity severe) my employer feels I’m a liability and need some “proper” restrictions. I feel uneasy about my career. I can’t tell them if I’ll be the same as I am now 2 hours from now.
I’m not sure what to do.
Oh, my peripheral nerves are ok. Neurologist said they are being affected from brain or spinal cord. He also did say he thinks it’s MS. (Even my history makes me at high risk).
I feel like I’m falling through the cracks!
Any suggestions? Please? My fingertips on my left hand are numb and my left foot is fire….as we speak. Ugh
By Erin Rush Moderator
HI lolagraknowla! I am so sorry you are in this situation. It can be so frustrating to not have answers (as you well know)! You did mention that your physician had ruled out a variety of other possible diagnoses. I wanted to include some information about various conditions that can mimic MS. They may have already been ruled out, but I wanted to include them in case there is something there you can ask you physician about — https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions/. I know some of our members have mentioned conditions like Lyme disease or Fibromyalgia (an autoimmune condition for which you may have already been tested, since you mentioned autoimmune conditions) as conditions that can mimic MS symptoms. I am sorry you don’t have more support in your life. It sounds like your husband is there for you, which is great. As far as your employment situation, the best thing I can suggest is document, document, document. If you are in the U.S., you have workplace rights against discrimination. Please consider keeping every communication and appointment record from your physician’s office. For legal purposes, it may help you should you be wrongfully terminated or punished for something over which you have no control at this time (your health). Here is some information about the ADA (Americans with Disabilities Act) and your rights — https://multiplesclerosis.net/living-with-ms/workplace-discrimination-know-your-workplace-rights/. I hope this helps. Please don’t let anyone keep you from fighting for your health. I know it can be exhausting, but you have every right to get the diagnosis and then proper treatment to help you feel better. Know we are here for you! Best, Erin, MultipleSclerosis.net Team Member.
Erin, thank you for the links. I have done so much research about causes of my symptoms….it’s nice to have help. I am a strong believer in advocating for myself…(it’s actually what I do for developmentally disabled adults everyday!). This is harder, though, as I deal with my own frustration and pain.
Most of the ms lookalikes have been ruled out, but a few haven’t.
Looking for a new neurologist as mine is no longer accepting my insurance. There are only 3 other neurologists in my area, so this will mean travel. Oh well…. for the greater good!!!
By Meagan Heidelberg Moderator
Best of luck to you, Lola! Please feel free to keep us updated on your journey. Please know you’re never alone here, and like Erin said – we’re here for you!!
Meagan, MultipleSclerosis.net Team Member
I’ve never been diagnosed.
I’ve been looking for answers for two months now.
Some of my symptoms I’ve had for over five years I just learned to live with.
I haven’t been able to work in over a week.
Two months ago my pain became so severe I was left no choice but to get help
I’ve seen orthodontist
They said even though I have bulging discs and stuff it’s all normal for my age
Should not be in this much much pain
Back to symptoms
I am so weak I can barely walk
I mean lift my legs like weights are in them
My arms and legs get so weak when I’m up for a few minutes it’s ridiculous
My neck is stiff like knots in it
I’ve had balance problems for years being pulled to sides, running into doorways stumbling
Dizzy everytime I get up
Dizzy spells are worse in spells
Sometimes I feel like I have to pee but can’t tell if I’m going then get up and I’m still going
Or I can’t go
I’m supper emotional
It’s not that I want it to be ms, I hope it’s not. I just really need some answers and I feel like I will never get one.
I have appointments with different doctors but at this point I don’t believe I’ll get any answers anymore
By Kim Dolce Moderator
Hi Dawn, I hear your frustration.
Multiple sclerosis is very hard to diagnose. My own dx took six years even though MS presented in a pretty typical way. One difficulty is that so many other medical conditions have the same symptoms. It can take a long time to rule out all other possible causes. Part of the reason my own dx was delayed was that I also have a herniated cervical disc, and that could have caused like symptoms and the white matter signals that showed on an MRI. Time can help eliminate the differential diagnoses–not good news for people like you that have waited and suffered for a long time.
Your doc can prescribe symptom meds without a diagnosis. They can also refer you to a urologist for urinary problems. I see one of those myself. Until you get a dx, you could focus on getting some symptom relief.
I hope you can get some answers very soon. Please update us when you find out more. –Kim, moderator
Thank you, they have already ruled out it being my discs or any of my spine issues for now. Told me to find another doctor. So I am scrambling to find a doctor today.
I go in to see my primary physician tomorrow because my neurologist that handled my aneurysm 5 years apparently
Even though I’m supposed to be going on for on going check ups moved and they said I have to be referred to get a new one. So apparently I have no neurologist to go to.
I am not sure who to ask for. I had a good one.
Now I can only hope for a good one
I’m new to all this and am waiting on seeing a second neurologist for a second opinion. I have some white spots on my brain according to a recent MRI and numbness in face, constant dizziness, difficulty breathing at times. Does anyone else have an EPIC headache all the time. Mine hasn’t let up for a moment since feeling symptoms for the first time about a month ago. Do you take anything to treat it? It feels like a giant hand crushing me down.
By Kim Dolce Moderator
Hi doleatto, I’m sorry you’ve suffered so long. You might have a migraine. I have those on and off but I don’t take anything for them. Let’s hope others will see your post and respond with their own remedies. If you haven’t already, contact your regular doc for an evaluation and possible treatments, too. I hope you’ll get some answers about your neurological symptoms very soon. Waiting is so very stressful. Please do let us know what you find out.
Hello, first time here, I’ll try to keep it short. I’ve been suffering from back pain for over ten years, depression and alcohol my entire life. I really had hoped that some of life would get easier without alcohol, but over a year of sobriety has only given me clarity. I can look back at the past three years of my life without any emotional distress. One thing that I’ve been able to piece together is that my condition is not improving. I’ll back up just a bit. Two and a half years ago, started talking Prozac for what I thought were panic attacks. I even had one right in front of my doctor. I don’t know how effective Prozac was at the time, but I made it through most of the summer at my job without losing it. Until I lost it. I worked as a line cook at a very small but extremely busy cafe. I pride myself on my work ethic and respect for my co-workers, but I had to walk out on a Saturday night because my brain refused to let me go near the stove. I couldn’t think, I just needed to leave. Three months later I have to leave my new job because I was diagnosed with Pancreatitis. Six months after that I have to leave another job because my depression drove me to drinking at work. At this point I’m done drinking. I’d taken a year off of work to focus on my health and build a house for my family. I’m not able to go three months back at work before my health starts failing again. Every symptom I’ve ever had is now worse than ever. Especially the ones that never bothered me: painful eye movement, tingling in my fingers, chronic fatigue. But I also started seeing other more subtle problems. Trouble doing math in my head was pretty obvious. During conversation, I would forget what I was talking about mid-sentence. When I developed another numb spot on my back, I decided to call my doctor. I know I said I would keep it short, but this is the really important part. Six weeks ago, my wife gets back from a trip to see her family. A week later we decide it’s time to separate. It was a huge relief for both of us, really. One week later I get a minor work injury pinching my ulnar nerve, and I get the rest of the week off. I’m back for one shift, and I start getting a whole new set of symptoms in areas that had never been effected. I had to leave yet another job, and without any clear explanation. It’s been one month to the day that I started reading about MS. I’ve talked to my doctor about it. I’m getting an MRI of my head soon. I’m not holding onto any hope at this point. I’m okay with this. After everything I’ve been through, I can live with this.
By Erin Rush Moderator
HI J.Aaron and welcome! First I want to say congratulations on a year of sobriety! That is a huge accomplishment.
It does sound like you have been through some very tough times recently. I am so sorry your various symptoms affected your ability to work. But, I am glad you are being proactive about your own health. You may have already read about the diagnostic criteria used to reach an MS diagnosis, but I thought I would provide the link here, so you can see what tools a neurologist uses to diagnose MS — https://multiplesclerosis.net/diagnosis/.
Sometimes, getting answers can really answer a lot of questions and I hope that happens for you, whatever your diagnosis may be.
Since you mentioned cognitive/stress issues, I wanted to share a piece written by one of our contributors about his experience with cognitive issues (frequently called “cog fog” here) — https://multiplesclerosis.net/living-with-ms/my-cognitive-changes-because-of-multiple-sclerosis/comment-page-1/#comments. There are quite a few member comments following the piece that you may find interesting.
Please know you are not alone here. Whether you are diagnosed with MS or another condition, the members of this community get what it is like to live with a life changing health issue. Please don’t hesitate to reach out should you have any questions or concerns. And please do keep us posted on your diagnosis, should you feel comfortable doing so.
Thank you for taking the time to share a part of your story here and again, congratulations on your sobriety!
Best, Erin, MultipleSclerosis.net Team Member.
I haven’t been diagnosed as of yet, my journey started in 2002 after I was involved in a terrible car accident. I had compressed discs and pinched nerves. 6mths of physical therapy. My balance has never been the same I just chalked it up as to being clumsy. Forward to 2012 uncermountable fatigue set in and I was always sick another round of antibiotics and steriods. Blood test to rule out obvious disease and MRI no answers. I left my job of 16 years on a disability retirement. About two year later I started to feel better gaining my life back, Maybe my illness was some how connected to my job? Didn’t think too much of it until recently October 2017 I had a taken a really bad fall going up stairs, ended up with a concussion. I am having so much difficulty with brain fog, dizziness, headaches, bp, numbness on left side of face, insomnia, and my legs feel so heavy hard to move at times. I had ct scan, and MRI. Dr says that the brain takes time to heal from a concussion. Ugh it’s been three long months. Did I mention feel like I’m going to pass out at times. Placed on meds for bp and muscle relaxant. When researching I started to see similarities in my symptoms of MS. I just want answers.
By Erin Rush Moderator
Hi Dragonfly7! I am sorry you are dealing with being undiagnosed. Don’t be afraid to keep advocating for yourself and your health. I know it can be draining and frustrating to keep pushing for answers. Your symptoms are serious enough that they should be properly treated. I do hope you are able to get some clear answers soon! Thank you for sharing! Best, Erin, MultipleSclerosis.net Team member.
Good morning going through the same thing. Have been having symptoms for a long time,but everytime i went to the doctor he said doesnt have to do with him see another doctor. I felt like i was gling around in circles, or maybe i waz imagining my symptoms. 2 yrs ago i had an mri of the brain, i had a previous one 2 yrs prior that came out clear but the one i had two yrs ago came back and it said tiny punctuate white lesion most likely representing ischemic demylation. My neurologist told me to leave it alone. Being i am not a doc and trusted this doctor i left it alone. However symptoms kept getting worse and constantly asked doctor if i should follow up with that lesion he said no. Now the weakness in my leg is all the way up to my hips. My gyn finally said maybe it was my englarged uterus sitting on my nerve, got a hysteroctomy. Thought it would help, nope got worse. I started leaning to the ride side even more. And my legs got even weaker Cant lift it when sitting or lying down at all. I sometimes miss stairs almost fell a frw times because i cant lift my Right leg as high as i should. I was supposed ti get mri of lumbar plexis but this one neurologist didnt feel like doing a peer to peer because insurance denied it twice. Finally i ditched the other neurologist and went to cornell. Pretty sure i have ms. I asked doctor if it was necessary to get lumbar plexis mri. She flat out said no. No reason too. Not coming from nerves. I kmow its a long message. Just goes to show you have to keep nagging the doctors until they listen. I probably couldve saved strength in my legs if i had. But ready to handle it and do what i have to do to feel good. Hope you feel good. 🙂
By Christine F Moderator
Hi Vivy! Thank you so much for sharing here! You are right – it is so important to advocate for yourself and seek second or even third opinions if necessary. I hope you are finally able to get some answers and get the treatment you need to help manage your symptoms. Thank you for being a part of the community. We are always here for you! Thinking of you, Christine, Multiplesclerosis.net Team Member
It was a long journey for me before I found out. Always had symptoms. Things got worst in 2014. I kept going to the doctor for headaches, foot drop, stiffness in legs, pain, etc. Wasn’t until 10/9/16 when I had mini stroke that things came to surface in terms of what was wrong. What was funny was that I diagnosed myself a week prior. My husband said I don’t think it’s MS. I said yeah I have all these signs. I had just been pushing through it. I’m paying for it now! I feel my MS would not be as bad had I been diagnose early. My balance is off. I cannot walk long. And not without assistance. My legs always feel heavy, pain, etc. So I always wonder if I would’ve been better off had I had medicine early. The medicine work to stop new lesions.
I’m looking for it to make me walk straight. And without the foot drop. I want my legs to feel normal. No numbness, tingling, etc. I want to wear my heels one day again. I wanna not be fatigue. Seems to be wishful thinking. But I like to keep hope alive!