So I was diagnosed with MS last week after a spinal puncture failed to give enough fluid to test for it. My neurologist said that he would work around that but he is most positively sure I have MS due to all the symptoms I presented him with. I was having long daily migraines two of them lasting for almost a month occurred last year and one the prior year. Then I experienced pressure on the right eye and vision loss after he put me on Diamox to treat what he thought was fluid on the brain or what is defined as Pseudo-tumor Cerebra. I was suffering with right sided facial paralysis with pressure on the right eye to where either I had total vision loss or just vision disturbance like I was trying to see with crossed eyes since middle of last year. Then in November, I had the vision disturbance, facial paralysis and I kept pushing to get things done thus becoming paralyzed from the waist down. It was very scary. My speech was even slurred and then it was like my eyes were cramped into looking upward. Strangest feeling I ever felt in my face. And because I was always by myself I didn’t realize my face was drooping on the right side until this episode landed me in the hospital. Another neurologist saw me in the hospital and couldn’t figure out the paralysis from the waist down. The feeling came back into my legs within about two hours. They had done the regular CT scans and MRI’s all regular and then with dye. Was not a stroke. No signs of a stroke on the scans. Was still considered fluid on the brain. So I got sent home. I followed up with my neurologist last Tuesday and he said after looking at the scans and he showed them to me, all the lesions on my brain, and all my symptoms, he was calling it MS. Looked like about 15 to 20 lesions. These also looked a lot bigger than the ones on the scans done two years ago for the migraines. That neurologist told me to get in his office the minute I left the er. He told me to come straight to his office. That this was too many lesions for my age. I was 49 at the time. But I had already had a neurologist. He thought I was too old to be diagnosed with MS. But he finally said it was after seeing the new scans. I told him what that dr said in the er. And he wasn’t concerned about the lesions. And the medicine did work and is still working. Apparently I’m on a low dose too. What are your thoughts with this diagnosis? I’ve also very very fatigued. And my feet hurt so bad. By time I lay down to rest them which only takes about two hours on them before it starts to really hurt to walk, I put them up and cannot walk on them until I have rested them for three hours and no less than that. I’ve tried and tested them out on two hours of rest and I still can’t walk on them. The facial symptoms occur about once every two weeks and now when it comes on I stop what I’m doing and go home and rest. It usually takes an over night sleep for it to disappear. After reading these posts on here, I couldn’t believe how familiar all of it was. Thank you for your help. And I’m sorry this my post is so long. -Ang
Newly Diagnosed: So I was diagnosed with... - My MSAA Community
Newly Diagnosed
Welcome to the group
You will learn a lot hear as well to be able to ask aa y kind of questions.
Thank you for your reply. I guess I should ask as my neurologist said he will treat my symptoms as they come on. That you don’t necessarily need the spinal puncture to say I have MS when I have all of these symptoms, is that true? He said what cinched it for him was all the lesions. He was surprised at my age.
I am so sorry you are going through such a difficult time. For me, as many others, the first couple of years dealing with MS were the most scary until I learned my boundaries and limits, keeping me from having further exacerbations - so wishes of strength to you for that.
As far as diagnosing, everything I've read is that a spinal puncture is not necessary (I didn't have one) given that the MRIs are so much better 'today' and given that you haveMRIs2 in 2 different points in time that show the increase in # of lesions.
As far as your meds, you mention that you are on a 'low' dose. As a patient, not a practitioner, the volume, extent, and duration of your symptoms seems to warrant that you'd be on a strong dose rather than a 'low' - I'd follow up with your practitioner on that. There are so many meds available now, there must be something that would work with your body to stem the symptoms you are experiencing.
Wishing you a 'welcome' to our community.
Thank you for your reply and support. I really do appreciate it. And I will ask about medicine. Because he isn’t going to actually start treating any of it until I have one of those episodes with the pressure over the right eye and vision issues. He said when that happens call him and he will call in steroids and he wants me to take a burst of them for three days and see If that helps at all. Im on a low dose of the Diamox for fluid on my brain and I don’t want to stop that one for fear of the migraines coming back. I’m on methadone for pain management and since everyone really didn’t want to give any more meds or any at all until the issue starts again, I am going to up my methadone. My arthritis doctor was fine with that. Because I waited weeks to get this all done and talk to my doctors and since then, my pain has significantly gotten worse to where I can’t get any sleep or barely get in and out of bed. My feet hurt the worst. And it feels like I’m walking on shards of glass. I was tested for neuropathy and I don’t have that. There is no swelling. So I don’t know why they hurt so bad. And when I first start to test them, if I get up before the three hour mark, it is sheer pain, like the worst so I try to just walk on my tippy toes. After three to four hours, that seems to be enough rest to get back up on them again for a little bit. I don’t work but travel at least once a week for a doctor appointment. And just doing that, (wait up to one hour for the medical bus to pick me up and ride that for anywhere from 15 minutes to 30 minutes and then dropped off, go to the appointment for an hour, and then wait another hour for the bus to pick me up and take me home.) I get home and just lay down for three hours. It’s just exhausting too. And so I sleep a lot. Never used to sleep at all. Had so much trouble sleeping, that I used to cry about it. Now I’m over sleeping. Sorry for rambling on. I’m just newly diagnosed and I’m not looking forward to this mess at all. Thanks again for your reply and support. It’s definitely about boundaries and limits.
Does your neuro specialize in MS? If not, find one.
Yeah I don’t even know. I think that’s where I’m going to start. The doctor and then someone said an MS center where I live. So that’s what I’m going to look into tomorrow. Thank you, I appreciate your help.
I looked yesterday and he does specialize in it. So that made me feel a little better when I researched him. He also is the only doctor I have ever had to treat patients by phone or by video even, it’s under his description. Whenever I called in about my migraines getting worse and as I would lose vision and was falling all over, he called me back every time personally and had a really great bedside manner. I wouldn’t want to give that up. He did look so discouraged that I had MS. It was almost like he was diagnosed with it. He even called me when I was visiting my daughter in Florida and had me go straight to the ER. He asked me which one and I told him cause I lived down there for 8 years and familiar with the hospitals. He called them and made sure he worked with them as to how to treat me. It was really nice of him to do all that for me. I had my initial spinal tap down there but they didn’t test me for MS. He really thought it was fluid on the brain. Because as soon as they took out the fluid my migraine was gone in an instant. So this has been a very long, confusing and exhausting ride to come and settle on MS.
Wow. I would say your dr. is a keeper! I can 't even see mine anymore. I see his NP. I know I'm fairly stable so that's why and if there were changes I'm sure he would take over again. But I have questions about grey matter that the NP doesn't know. I'd like to ask him directly.
That is true. If u feel new symptoms or you feel they’ve stopped working contact the dr immediately don’t do the wait and see game. Good luck
Welcome to our little family. I'm sorry to hear about your issues and diagnosis and hope we can offer great support for you.
A couple of things popped out at me when reading your introduction. That a doctor would be surprised about MS at any age, with the exception of infancy, surprises me. MS does not respect age by any means!
CSF (cerebrospinal fluid) analysis is not always definitive for diagnosis. My oligoclonal bands were negative, but my numerous brain lesions and clinical presentation led to the diagnosis.
Is it at all possible for you to get to an MS center? Those working there are specialized in MS and may be better able to confirm or rule out MS for you.
Here is the link for myMSAA, which has numerous resources for you:
Please feel free to ask questions. We certainly aren't doctors, but have many, many years of experience to share.
Thank you so much for your reply and the link. I will surely look into what you have provided for me and also look into an MS center. I really appreciate your help and support. I can’t thank you enough. Have a great day.
welcome to the family, spinal tape. You are much braver than me, Needles scare me. A phobia I guess,
Well when I want an answer instead of sounding crazy and for what it was worth, I put up with that last puncture. My neuro said it depends on who’s doing it. Some doctors are good and some are not. But yeah that last one was pretty bad. I have had a lot of injections for my back as well so I think he was bad at that craft. He needs to stick with surgeries. Lol
I must have excellent florotamists (vampire) because when it comes to needdles I am a coward.
Look into Disease Modifying Therapy immediately if not sooner. The oe that you want to take for Relapsing remmitting is Ocrevus. 2x annual infusion. Some side effects but from what I have been told they can be managed with benedryl
Hello and thank you. Yes someone else gave me that same name. I will definitely look into it. Thank you so much for the guidance. Well wishes to you.
Welcome to our family. I am so sorry that you have been dealing with all of this. Have you considered changing to the Neurologist who treated you in the hospital and gave you the MS diagnosis? I think he might be a good option to consider, and would be willing to discuss getting you on MS medication NOW! Please keep in touch, and let us know how you are doing. May the angels watch over you. Linda
Thank Linda. Sorry for the late reply. I’m not here on a daily basis and I just found these messages. Yes I looked into him. He does treatment by telephone or video too. So I did like that type of treatment as when I was in Florida and even now, if I call in and am having a health issue he calls back personally. I think he was just disappointed that MS has gotten to another client. If that makes sense. Like he was just as upset as I was. I’m on medicine for the fluid on the brain and right now I’m ok aside from the pain in my feet. I haven’t had an episode for almost two weeks. Thank you so much for responding to my post. And for your caring words. I wish you well. Ang
I'm not a doctor but was diagnosed 15 years ago when I turned 50. MS doesn't care what age you are when it rears its ugly head. I would probably check in with the neuro that you saw in the hospital as he seemed to be a little for familiar with MS than the one that said it seemed odd that you would have MS at this age. Its important to have a dr that is up to date with the latest info regarding MS. There are several other tests that the neuro can do that helps to diagnose MS. There isn't just one test because everyone is different and MS affects everyone differently. And the sooner you can get on a (DMT)Disease Modifying Treatment the better. Ocrevus is one of the lastest DMT with very little side effects and you only have to get an infusion 2x's a year vs. injections daily, weekly or montly. There are some DMT's that are pills and other Infusions depending on your degree of MS. I suggest you get on line and research MS as much as you can. Knowledge is Power. The more you know the beter you can manage your MS. Good luck to you.
Hello and thank you so much for all that information. I copied and pasted that info on my tablet. I will take every little bit I can to help me on this new journey. Thank you so much. Well wishes to you.
Wow! You have had a very scary time! Well now with diagnosis you can now be started on the correct medicine. That should help quite a bit. Don't be discouraged if the first medicine is not the correct one for you. There is a bit of trial and error going on to get it straight. My first two gave me bad reactions but my third is my golden ticket. No bad reactions, I have been pretty stable and it's easy for me to take.
Keep us informed and ask all the questions you want. Rant, whatever... This site has been my best friend. We laugh, cry and just "talk" to one another. Welcome.
Hello and thank you. And yes it has been very scary. And they are my worst fears for my elder years, going blind or paralyzed. And I’m sure that is going to be the likeliness of my future. And I’m used to the medication trials and the failures it brings forth because of my thyroid. But I will copy that information that you just shared with me and look into it. Some one else gave me some information about medication too. So thank you so much. I will take all the help I can get with this. As it is so complicated. Well wishes to you.
I don't have a thyroid anymore. I had 1/2 out when I was in 6th grade because of a goiter. Then 47 years later I had to have the other 1/2 removed because there were all kinds of tumors from it going down my neck. Both times the doctors thought cancer but neither one was, thank God.
OMG. Yes thank God it wasn’t.
I'm so sorry you are going through all of of this. Sometimes it takes a while for you to get a final diagnosis. I was diagnosed at 43 after the MRI showed lesions on my brain. I'm taking Tecfidera now but was on Avonex for the first 10 years. Fatigue comes and goes, it's so annoying trying to plan things around it.
Hello and thank you. Yes it is. I agree with you on planning things. Or I show up and have to leave sooner than I wanted to. I’m not sure about medications yet as he just wants to start me on a burst of steroids once I get another episode with the vision and facial paralysis. Thank you for sharing and helping me feel I’m not alone on this new voyage.
Welcome to the group sorry you had to join. This is the best group to join though.
Hello and thank you. That’s what a lot of folks are telling me.
Welcome! I was diagnosed finally at 55. I was misdiagnosed for 4 years before that. My Neuro didn't think I had MS because I had no eye issues and there weren't that many lesions in my brain MRI. The one of my neck is were he finally found lesions. That was months after the brain MRI. So he did a lumber puncture to make sure since he still wasn't sure. The advantage continues.
Hello and thank you. Wow I didn’t know the lesions could show up elsewhere. I’m learning a lot on here. Thank you for sharing and helping me understand. Well wishes to you.
They show up in your brain & your spinal chord. I had 5 on my spinal chord & 9 active leisons on my brain & my neuro still did several other tests to make sure.
Oh wow. I’m so sorry. He hasn’t done any tests on my spinal chord or scans. I don’t know about active or how they test for that? I’m scared to know that answer. 😱
Don't be afraid to know what's going on in your head or the rest of your body for that matter. The more you know the better you can take care of yourself. They test for active lesions when they do the MRI. They will give you and injection of a dye that will make the active lesions light up on the film. It doesn't hurt or make you feel wierd or any thing. They do a spinal tap to check for lesions in the spinal chord. That isn't bad if you don't get up right away afterward. Its important to let your body adjust to the different level/pressure of spinal fluid before you get up and start walking around. If you don't you can get a massive headache.
Oh yeah, he had me do the walk that the police make you do, the heel to toe? I couldn’t do it. I would fall right over. And so I don’t drink but do you know I would fail that test if I was pulled over? And I can’t walk with my eyes closed either. He had me shut my eyes and try to walk. I couldn’t do it, I immediately fell over. He had to catch me every time. So that was one weird test. 😂. Has anyone else had that test done?
The physical therapist had me do that. That's when I was finaally sent to a Neuro. He didn't do that tests though.
Sorry you are here but glad you have found this great group. I was diagnosed in july 2019 and this group helped me so much. Blessings
Hi Ang, and Welcome to our community aka family! Never apolozie for a long post, your feelings and expresstions help ALL of US! I was diagnosed at 49 and went through seven Neurologists before I found my gem of a doctor! So we share some commonalities in the struggle. The most important factor is now you can start getting the treatment you need to feel your best! Always feel free to ask any questions about medications, or whatever you feel comfortable with.
Blessings and Peace 
NeeC
Thank you so much NeeC! Everyone is making me feel so welcome here. I can’t express how much that helps me feel better especially when I feel like gum on the bottom of a shoe. Thanks for replying to me. And wow, that is a lot of Neuro’s! I’m going to try and stick this one out with the one I got. I’m going to ask him some questions by email to see how that goes. Just ask him about what you all raised with me. Those were and are very important questions and things for me to be looking for. So thank you for your guidance, support and the love. 🥰 Bless you and I wish you well.
Ang🙃
Okay, let me know how everything goes; and keep me updated. Hugs and sunshine your way Ang, praying for you, stay lifted up!
Blessings -
Neec
Welcome to this forum Hidden I look forward to reading more of you posts. Keep Smiling 
Thank you for your reply. I always try to stay positive. I hope I can share some helpful information myself and spread some love as well along the way as this is a rough journey for all of us. I wish you well. Ang🙃
Thank you and Keep Smiling, my friend
Visual evoked potentials test
Had difficulty with dianosis
MS and things to avoid for the newly diagnosed.
