Hello, I'm Ana. I don't know for sure that I have MS, but I have had three different doctors suggest it over the years.
I have had symptoms for about ten years, now. They did an MRI at the beginning, but they haven't done any sort of tests that would show MS since then. ERs mostly just give me fluids and check my appendix and send me home.
Yesterday, I was sitting on my couch and the right half of my right eye started to blur. That was scary. IvI' had vision changes, but it's usually both eyes, and not as intense.
My eyes started to hurt when I moved them, and it was hard to keep them open.
When I went to lie down, my legs started to do their heavy tingly thing that tells me I'll be crawling to maybe make it to the bathroom. And when I tried to roll over to get more comfortable, I was hit with really bad vertigo, and had to crawl to the kitchen for a mixing bowl.
I'm terrified that either I'll never get a diagnosis, or that by the time I get one, I'll be too far to really improve much.
It's pretty obvious to me that something neurological is going on, and several doctors have agreed with me that MS fits the best, it's just so frustrating that no one has tried to find out what it is even when I directly request referrals.
I just want a doctor who will take my health seriously.
I feel you!
I was diagnosed with sensory processing disorder a few years ago. Then migraines (based on visual symptoms, not headaches). Had an orthopedic doctor order brain MRI to rule out MS. MRI showed several white lesions but the neurologist said worng pattern for MS. Second neurologist also said no MS. All symptoms are attributed to migraine, SPD and "we don't know."
Hit my head this year and went to a neuropsych. Based on her testing, she wanted me to get checked for MS. When I told her I'd already been checked, she wanted me to get another opinion. So I saw MS specialist. He did not look at my MRI but said I did not have MS.
I'm not clear on what basis he ruled it out. I was relieved until the past week when my chin went numb. Then the lower part of my face.
I read all the accounts on here of people that were misdiagnosed or undiagnosed for years, and I worry that if I do end up having it, it'll have progressed too far for treatment to help.
What is with these doctors?
I have heard of people going undiagnosed for 20 years, and some who were put on treatments as soon as they noticed a symptom.
I feel like we need a real Dr. House just to sort us. Even the cases he rejects, he gives his opinion on. Why can't real doctors try to find things, even of it's hard or a long process?
anxietyridden - I am sorry you are going through this. I went undiagnosed and misdiagnosed for many decades. It's upsetting to know that something is wrong. I finally got a diagnosis when I was 61 years old and I had started having symptoms when I was in my 20s. My newest neurologist had spotted something the first time he saw me and then asked me to walk. He ordered MRIs immediately. Finally, I had a diagnosis, Secondary Progressive MS. I eventually was put on Tysabri infusions to slow down the progression of MS. I hope that you will be able to find a neurologist that will take an interest in you and try to find out exactly what is wrong with you - if you have MS or some other condition.
airmid - Ana, I'm sorry that you can't find a doctor that will take the time to help you and diagnosis you. A lot of the doctors just don't have the time to spend with patients like they used to be able to do. Then, I think a lot of doctors don't want to make a diagnosis and have it proven wrong and then might be liable for a malpractice lawsuit. I sure hope that you can find the right doctor/neurologist that will be able to definitely diagnosis you with MS and you can start treatment.
Your cat is so beautiful.
Have you asked for a referral to a neurologist? Why not call the national ms society and ask for the name of a board certified neurologist in your area.
How about you google neurologists in your area and check out their qualifications and also call the national ms society for a board certified(that means they go to class every year to follow up on what is new in the industry) neurologist, then pick one and call for an appointment and if they specifically want a referral call or see one of the doctors to give you a referral. If you make a lot of noise they will have to do something to shut you up, just dont give up, it is your health. You know something is wrong keep working on getting answers. You will find someone even if you have to go to the bottom of the barrel. I know for sure, it is frustrating finding answers, fight for answers until you are satisfied.
I have been asking for three years for a referral. I just asked again yesterday from my newest doctor.
And my insurance has already said they won't pay for anything without a referral.
I'm so sorry to hear that you have been dealing with this! That is incredibly frustrating.
Have you tried seeing a neurologist that treats primarily MS? You can search for MS Care Providers at this link: Partners in MS Care
You may also want to consider other conditions with similar symptoms that you may want to rule out as well: Other Conditions to Rule Out
. Seeing specialists such as rheumatologists, endocrinologists, infectious disease specialists, as well as a neurologist may be beneficial. If you ever have any questions for an MS Navigator, please call 1-800-344-4867. Take care and best of luck to you!
MS Navigator Abigail
I have asked for referrals, and cannot see any specialists without one.
I was officially diagnosed late July 2017. Apparently unbeknownst to me, according to my brain MRI results & spinal tap results, the neurologist says not only do I have Ms, but I'd had it for sometime. I was the type to find a way to write off symptoms, even ones that may have allowed my Ms diagnosis to come sooner. Also no one in my family that I know of has Ms, so I had no reason to suspect it. I think diagnosis is tricky, I was lucky was I got tested I was diagnosed so quickly. My suggestion, is if you haven't already, would be to seek out an Ms specialist & request a brain MRI with contrast. Also bloodwork to rule out Lymes disease is a good suggestion. Lastly, if any Ms lesions arise from the brain MRI, go for the spinal tap as well to confirm if they'll approve it.
The road to a diagnosis can be long and painful. I understand your fear of not receiving a test that can say definitively whether you have the disease or not. Your symptoms sound very similar to what I went through. I used to be a commercial truck driver and I always thought I had a dirty lens, two years later I was diagnosed by MRI because I could not move and was seeing double. You also mention vertigo when you roll over I still suffer with this problem. I can only lay on my left side. You can buy over the counter medicine to help control the vertigo, I use Dramamine or Meclizine which helps me sleep and takes away the discomfort caused by the vertigo. The tingling that you describe in your legs is also something I have experienced, now it feels like all the muscles in my legs are active and I am sliding to the foot of my bed like a snake slithers across the ground. Don't lose hope, all of the medications aside what has helped me the most is going to the Gym and doing 30mins of cardio, if you have MS and you start yielding to irregular feelings you may be hurting yourself in the long run. I used to think I was just sick or having an off day and spent lots of time in bed this had a compounding effect.
Sometimes the vertigo is caused by the crystals in the ear being in the wrong position, there are exercises for vertigo and vertigo caused by ear problems on youtube.
Hi Ana— I’m so sorry you’re experiencing this frustration! I cannot agree with you more on the wishing that doctors would take our health seriously!
I was diagnosed April 2016 based on MRI and spinal tap results I received at the hospital. I finally decided to get more help by seeking an MS Specialist early 2017. To my disappointment, this Specialist was never fully convinced that I had MS. He said the pattern of the lesions in my brain weren’t consistent with MS. He had me go back to the hospital where I got diagnosed so that I could bring him all of my tests results (specifically those of my spinal fluid). Long story short, he was never fully convinced even after I provided him with all of the paperwork. He said that my spinal tap results didn’t list a specific item he was looking for..I was frustrated because it sent me back on the emotional roller coaster of uncertainty. Had I been injecting myself with MS medication for a year for no reason?!
I switched insurance and decided to see a different neurologist at the end of 2018. This Neurologist simply read the old notes of the Specialist and he too said he wasn’t convinced I had MS. I was so sick of this BS that I asked him to order an MRI. He tried discouraging me from doing so, since I’d had about 3 MRIs in the past and the “Specialist” was still doubting my diagnosis. I didn’t care and told him that I wanted him to see it for himself.
Weeks later, this new Neurologist calls me and tells me there were 4 areas that lit up with the MRI contrast of my brain. This is when he said that I definitely have MS.
My point in telling you this story is: don’t give up! We need to continue to advocate for ourselves. Its so sad to think we need to convince doctors of our struggles :(