I have been battling health issues since I was about 13. I am 38 now. When I was 13 they found one white spot on an mri on my brain. From what I remember they just said to monitor it with mri every year. I always had a tremor and some balance issues but nothing major. I have always also had headaches. I have had periods of total exhaustion with muscle pain worsening headaches and foggy thinking but they always went away. I never followed thru with the yearly mri as I should have.
In 2017 my gp sent me to a rheumatologist and he did blood work and said I had fibromyalgia. I told him all my symptoms including the tremor balance problems and a new issue of burning and numbness. He didn’t recommend any kind of mri and I also told him about my previous diagnosis with a white spot.
About 7 months ago my brain just kinda started going out on me. My thinking is so foggy. I don’t make sense well. My attention span is nothing. My balance is terrible my shaking is so much worse and it’s difficult to walk. My gp finally ordered an mri and it shows several white spots. They referred me to a neurologist who completely wrote me off today. As if I was wasting her time. She said these spots were just the original spot. Now she did not have the original mri to look at and confirm this. I kept telling her no my original mri showed one spot this is several. She kept saying well they are in the same area so it’s the same thing. But the radiology report showed left and right hyper intense areas and all she would focus on was the one
Her neuro exam was done in about 5 min with me in a chair with a few reflexes and a short walk in her small office. I didn’t feel I did them well but she just rushed me thru it. Then she said oh if u have trouble walking it’s your tremor and that’s from stress. I tried to explain it to her how my legs lock up and don’t work she would only talk to my husband then. At one point I was trying to explain my symptoms and she looked at my husband and asked “is she always like this” like I was being dramatic when I was simply looking for the words like I told her I had trouble doing.
She asked to send me to neuropsychologist and I asked how that would address my physical problems she said I didn’t have any and that she had spent enough time with me.
I am fighting to keep my job while having half a brain and no energy and constant tremor. She kept noticing how the tremor would change I said yes when I am nervous it is worse but it’s always there and sometimes I jerk with spasms and she looked at me like I was lying !! I am so beside myself. She prescribed me lexapro which what I understand is for anxiety which makes no sense. Can someone please give me some hope. I don’t know what to do here.
Run don't walk out of that office. Find a new neurologist i believe this website has some links to some pretty good dr's. Ask for a spinal tap and cervical MRI as lesions happen in both areas
Don't give up on you, but do give up on that doctor. There is hope, and there are many wonderful neurologists who have the drive to help, as well as treat you with compassion and professionalism.
That doctor is a quack!
go to another neurologist and get another opinion. The first neurologist I went to I was not impressed with at all, the let's wait and see approach was not a path I wanted to have anything to do with. If the second doctor doesn't help, go to a third or fourth or fifth. You know you and you know something is wrong. Dont give up until you find one who will help. Once you find a doctor who truly cares you will know it.
I sinsearly hope you find one soon and find some relief
Sounds like she was trying to hit on your husband, lol, there are jerks in every profession! Consider her a blessing, you are not as bad off as she is, ha ha.
While you are working on getting a compentent physician try some alpha lipoic acid, 600 mg a day, they are doing research studies on its benefits for persons with ms and the neuro I was seeing added it to my package of non drug therapies.
Also, Mediquest makes a hemp oil gummie bear, as well as hemp oil for under the tongue or gel caps, I am on 100 mg a day and find it works for my hands and arms (depending on my mood, gel caps, liquid or bears or a combo.) Vitamin D a minimum of 5,000 units daily or as your gp for a shot of 50,000 a week, also as to have your thyroid checked, some of us have thyroid issues.
Begin deep breathing exercises, and muscle relaxing exercises, you can find them on Take Charge of My MS post. Think of things as helpful or unhelpful thoughts, and work hard on quieting your mind (you know who you are, dont let anyone sell you a bill of goods contrary - you know who you are and you know there is something wrong, dont give up on you).
So far we are four who support you and agree with you, we stand beside you. We have had practice with charlitans, and sometimes we still get taken too, but we keep fighting, the heck with them or any other adjectives you like, giggle.
Brainwashing is the same as a sales pitch we are here to lend a voice to logical thinking, only you know you, keep looking for the words to describe what you are feeling mentally physically and emotionally, and keep sharing, that is the best way to find the CORRECT answers.
I think I’m still in shock of the way she treated me. My husband was trying to help and explain some symptoms and she kept giving him the “really??” Expression.
When she turned to my husband and asked rudely “is she always like this” I just about broke down and cried.
Yes I know something is not right. I don’t want to go on some big anxiety medicine because I don’t feel I need it. And from what I know of myself I know when I’m anxious vs when I’m sick. I’m not dramatic and I’m not looking for a specific diagnosis. I’m simply looking for an answer. She came in with her mind made up of what I was before she even met me ? She didn’t ask for symptoms or history or anything.
I am concerned because I know I always (or since 13 or so) had one spot on my brain and it was in the area called medial anterior left parietal lobe. My newest mri says t2 intensities in left posterior frontal vertex , more t2 intensities in right lateral frontal lobe and more nonspecific periventrical whitematter intensities. The description at the end says the most prominent are on the left posterior frontal vertex.
Now please could someone help me understand if this is the same spot as before and I’m just not understanding it right ? Maybe these are all different words for the same area?? I don’t know. She just kept showing me the one spot I knew I had. But it had other little spots with it now and to me it looked bigger. I told her that she acted again like I was making it up. All I have is my old report cause the hospital purges the images after 7 yrs.
if anyone could help me understand if these really are the same little area or not I would so appreciate it. Maybe I am crazy.
I'm in a similar situation. Getting a diagnosis has been so incredibly difficult, and I hate that you're going through it. I agree with others, get a different neurologist. Find one you can trust. Only then do I think you'd find the answers you need.
My current local neurologist believes I have a conversion disorder caused by stress, but I'm sitting here typing this with extreme difficulty, because everything is blurry. Yesterday, my legs were so weak, I couldn't move. I can't even carry on in conversation in the moment, because my brain is so foggy.
Don't be scared to take an antidepressant. Even if it doesn't help your symptoms, it may help with the stress you're dealing with. But, again, get that prescription from a doctor you trust. I'm currently on Cymbalta, which I love, and Gabapentin, which is causing a lot of side effects that I'm not sure I can handle. Boh have helped with pain, but the Cymbalta has dramatically reduced my anxiety.
Please don't give up. I know how hard this must be. When I get overwhelmed by it all, I find some quiet time to do something I love. I step away from everything medical-related, and come back when I'm reay to fight some more. I really hope you get your answer soon. ❤️
May I suggest Wikipaedia as a tool to look up the phrases in the report, it will explain well what you are reading. Or just google one phrase at a time. We are not professionals here, though maybe some of us are. These are the kinds of questions we pay professionals to answer, too bad you cant ask for your money back with that person you saw, but we dont always get what we pay for. You are not going crazy or not getting answers is making you crazy BUT ms is a very strange animal unique to each individual with symptoms common to some of us. Besides that, there are other ailments that share similar symptoms. A spinal tap is even not a perfect test for ms. I had my first symptoms at 16 but wasnt diagnosed until I was 43! or if i was they never told me because there were no treatments way back when.
You may also go to nmss.org and at the bottom of the page there is a link for the glossary to also look up the terms in your report.
Thank you for sharing your journey with us- how frustrated you must be. We're here to talk, you can always call for support, 1 800 344 4867. If you're interested in meeting with a neurologist with MS experience, you can find one here:
I am so sorry you're going through this. You're never alone here, this site is a great source of support. You definately need a different neurologist. My diagnosis came quick, symptoms for me were in mid May 2017 I awoke with significant speech slurring & my right lower jaw was stiff (smile downturned). Speech issues dragged on, in early June 2017 I had an MRI of my brain, neurologist said the results showed lots of lesions. Next came a round of blood work to rule out Ms mimics (such as Lymes disease), then an MRI of my cervical spine (which led to a diganosis of Cervical Spinal Stenosis) then finally a spinal tap. The spinal tap confirmed to my neurologist I indeed have Ms & likely have had it for sometime. I am on Tecfidera as my Ms medication and also I am on Lexapro for depression/anxiety. I would suggest having your next MRI of your brain with contrast & perhaps blood work to rule out lymes. Also document any & all symptoms you have experienced in the past & currently to bring to your next appointment. Being very detailed is important. Also perhaps seeing an actual MS specialist neurologist may benefit you. I hope you find the answers you seek, I am here if you wanna connect & message me directly.
Not in the shouts and plaudits of the throng, but in ourselves, are triumph and defeat. - Henry Wadsworth Longfellow
vsweeten - I'm so sorry that you went through such a terrible experience. That is so frustrating, not to have the neurologist listen to you and also to be treated like crap. Please see another neurologist as soon as you can. If the second opinion doesn't work out, get another neurologist, and another one, until you can find the right neurologist that will help you.
There is nothing more hurtful than a doctor who won’t listen to your concerns. That doctor is wrong— if they knew what they were doing, they would have taken the time to properly address your concerns. I know how hard it can be to follow up after an appointment like that, but you have to know it’s okay for you to fight for yourself. I would log on to my insurance website or even just google to find neurologists near you, make a list with phone numbers, then go through that list and make MULTIPLE appointments.
If you were looking for a new car, you’d shop around and test drive different types, why not do the same when looking for a doctor who will value you? Doing it like this helps me push through the weariness that comes with trying to do one doctor at a time, and you can always cancel the appointments once you find someone you like.
Good luck. Remember, it’s okay to trust your instincts. You know best what is happening to you and you’re allowed to demand the care you deserve.