think I might be loosing my mind

I hope you all don't mind me posting in this forum. I also joined the migraine forum, which I've had since I was a teenager but I've been pretty lucky in that they weren't terrible except around my period or if I was out in the sun, which has always made me ill.

My body has been betraying me for the last year and I feel like at this point they may be writing "stress, anxiety, hypochondriac" on my chart. I'm a 44 year old female. I have always been rock solid in the mental health department, being a hypochondriac was always sort of my worst nightmare, being "that middle aged woman", yet here I am, living large over here, wallowing in it. I went on anti-depressants two months ago and my doctor advised to increase them this week, which I did.

Last year I woke up one morning with vertigo. I went back to bed and woke up ok, I thought it passed but basically have had vertigo or dizziness since then. At first I went in immediately. They thought I had a sinus infection or maybe the crystals in the ears. Neither. I bought all sorts of things for my ears, to drain them, thinking it must be my ears. I then thought maybe winter would help. No. I lived with it for awhile since I can sort of control it by resting and I'm more dizzy then actual vertigo (if I have vertigo it generally passes quickly). Right before this I started having tinnitus in my left ear, so I sort of assumed it was my ears too.

During this time my feet started going numb, and my right arm had I guess the feeling would be more tingling/pins needles, not numb. I also developed a numb spot on my back. I also had horrible spasms in both my calves. I told my doctor some of it but sort of downplayed it. He did send me to a neurologist and I had a MRI that was clear and I thought that was the end of it. I did get better besides my feet which have never really bounced back. The neurologist put me on Topomax for the dizziness which I thought was helping. He diagnosed me with Basilar migraines.

Then about 6-8 weeks ago I started getting dizzy again, I had my normal check up with my neurologist, I told him I was getting dizzy more and he wanted me to up my Topomax if I could (I couldn't, it's a hard drug to take). But then one night I was sitting there, I was really tired and had a long day and lost site in my right eye, it looked like if you were driving a car on a really rainy night without the windshield wipers on. It was ok the next morning but I did have another episode a few days later of basically the same eye loosing focus for the day, it just unfocused, I wasn't as freaked out this time and looked in the mirror, and my right eye was obviously more dilated (no idea why). So I go back. I'm now being tested for all sorts of other things, TIA's, heart problems, auto-immune, all negative.

I asked when I went back in, for the first time ever in the last year, what about MS? He said I'm too old and my MRI in March of this year was clear so I don't have MS. He is the top neurologist here. Meanwhile this week, the numb spot in my back is again numb again and my left hand has developed a shake when I hold things but not all the time, only several time a week. So if I call and go in, he'll test me and it will probably just hold steady and I'll again look like a hypochondriac (or at least that's what I feel like this morning). I feel like my body is messing with me. My legs have also started shaking when I'm sitting, I can't really tell if it's the right or left or both, I can get them to stop by shifting around but they usually start again. I can't tell if it's because I'm clenching them or what, it feels like I'm clenching them because I have to manually unclench them to stop them from shaking.

Thank you for making it all the way through my post. I feel better for writing it. I told my primary care this week I had to hire a house keeper and arrange my day so I can get things done that needs done, like driving my young daughter to classes and doing other things and that the only way I can combat the horrible fatigue and dizziness is to rest in the afternoon. Like I said, he promptly upped my anti-depressant.

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  • I think, if it were me, I'd get a second opinion. I don't care if everybody else thinks the doc is awesome. If I did not feel he understood my concerns and simply wanted to increase doses of drugs, I would not like that. Topamax, as great a drug as it can be for many people (myself included for many years until recently), can have lots of side effects...including numbness and tingling and dizziness just to name a few. I wish you much luck in your pursuit of answers.

  • With my eye I requested a new doctor when I called but my insurance required me to get a new referral and start all over and my pcp wanted me in to see the neurologist that week. My problem I have with him, although he's very smart and probably the best neurologist, is that he's not very friendly for lack of a better word. Not sure what to do.

    All the tingling and numbness started before the Topomax. I've thought about trying to wean off of it to see if it would help but between the migraines and dizziness I'm a little worried, I made it 3 days last time I tried going down. The neurologist took me off any rescue migraine meds for now.

    I would like to be proven not completely "nuts" but on the other hand I suppose psychologically induced would be my best outcome. I don't like the feeling though. It feels like my body is playing tricks on me. Maybe I need to increase my yoga/meditation and just try to ignore it the best I can for now. I started seeing a therapist. The one thing I've always been able to count on was my mind/brain. It's disturbing to feel like your body is no longer playing by the rules.

  • Hi cheshcat sounds like your having a h*** of a time. I agree with Tinker-Belle about having the second opinion,or even a third. You are definitely not to old.. l was dx last yr and l will be 51 next month. And there are even older ppl than me that just got dx'ed. I also suggest that you start keeping a journal of all that's going on and showing it to your Dr. You should push for another MRI of your head and spinal cord. Sometimes Dr's don't see the whole picture of what your going through until you spell it out for them. I wish you the best of luck :)

  • Thank you Jesmcd2, until he told me I was too old I didn't know there was an age limit to diagnosis (I was 43 when I first had symptoms but had just turned 44 when I had my first MRI that was clear). Until loosing site in my right eye, I've honestly been trying to ignore it and not keep track. Because I kept hoping it would all go away and I feel like if I start going in there with a dairy I start really looking like a I need a psychiatrist not a neurologist. I mean I know what's happening in my own body, I live inside it, but to "prove" it, how do you prove things like randomly knocking things over or setting your cups down wrong or your left hand shaking randomly. I have another follow up next month and I am going to mention my shaking that's started in my left hand and my legs that have started to shake when I sit, mostly because both are increasing. A month ago it was "did that just happen", now it's several times a week for my left hand or my legs it's anytime I sit for awhile, mostly when I cross them though, I'm trying to figure out how to sit so they won't shake like that, it looks like I'm fidgeting and I'm not.

  • MS is a sneaky monster and everyone's systems are different. Pray you don't have this horrible thing they call MS. Your doctor is not that good if he told you that you were to old. But that being said for some ppl it can take yrs to get a dx. I was fortunate, my second doctor caught it and sent my to an MS Clinic at the hospital right away. But you should really write everything down to show him.

  • Thank you Jesmcd2 I really appreciate your input (and age :). My doctor doesn't "share" a lot with me, he doesn't really tell me what he's testing me for, he may have been more worried about TIA's and when this is all negative he'll be ordering another MRI, I don't know. If he doesn't, I guess I'll cross that bridge then. I can't keep living like this though. I told my PCP (who I think is starting to wonder about a psychiatrist for me at this point) it's not that I wouldn't welcome a psychological reason "stress/anxiety" over MS or some of neurological disease, I'm not completely insane. I want my normal life back. I just would like an answer. Thank you both for taking the time to help me this morning. It feels lonely some days <3.

  • Yeh, for sure. My body no longer plays by the rules, either. Best wishes getting some answers. I'm no doctor or nurse but I truly don't believe you are completely "nuts." You want answers and that is understandable. Don't give up!

  • Hi Chescat, it is not nice when you think no one is listening to you. I was 8 years of going to the docs, saw numerous surgeons, even paid privately only to be told to come back when I have been through the menopause. Finally my doc thought I had motor neurone so he sent me for a full spinal MRI and that same night rang me at home to say I had ms and he had arranged an emergency head MRI the next day, they couldn't move quick enough. I found having acupuncture really helped my migraines, I used to lie down in a dark, quiet room with my sick bucket, and my right eye would hurt so much, and my vision in that eye was blurred. Anyway I was 54 when dx with ms and now 6 years on they are gradually sorting me out. I hope you get sorted, keep in touch with us all and let us know how you are doing. Cheers Jimeka

  • Thank you Jimeka. I hope they can get me sorted. 8 years, I hope it doesn't take me that long to get a better answer. I'm sorry it took you so long. I didn't realize MS could be in your spine as well as your brain. I will update once I see my neurologist again in October, he may just tell me "migraines" and then I'll have to see what I'll do from there. It could be ocular migraines. I've never had them before but who knows. If I felt like a regular human I wouldn't worry so much about it and just deal with my issues as they come but feeling as I do, especially in the afternoons, for the last year is really wearing on me. I've given up alcohol, caffeine, lost 30 lbs, eat mostly just vegetarian with lots of vegetables/fruit, exercise regularly - not much since my eye indecent though, I've really haven't felt well at all this last 6 weeks, it's hard to get much done, although I know I would benefit greatly if I walked for 30 minutes a day, I have to balance that against everything else I need to get done in a day, with my dizziness if I do too much it basically is a road block in the afternoons if I expend too much at the start of the day. I've taken up meditation and yoga, gotten workbooks for anxiety and depression. I feel like I'm doing everything I can but I keep getting worse instead of better. I just don't understand.

    Thank you again for writing. I wasn't sure MS is even the correct board since my neurologist told me specifically it wasn't MS, I just don't know what else it could be. All my autoimmune tests are negative.

  • Hi Chescat, it doesn't matter which board you have written on as long as you feel better for doing so. I have found everyone on here to be very helpful and understanding, so let's pray that you get sorted soon. I hope your doctor listens, if not find one that will. God bless Jimeka.

  • Thank you jimeka, I appreciate your words. I talked with my mom this afternoon, she's had rhematoid arthritis for 30 years, she feels that because my left hand is new and getting worse and my legs are new I should call and check in with my neurologist on Monday. I guess I will and at least see what he says.

    Thank you everyone! I was tired today, which always makes my symptoms so much worse and harder to deal with.

  • When I was 35 I developed horrific migraines on the right side. After a few years of living with them and being treated for them I started getting weakness on the left side whenever I got the migraines. The doctor diagnosed me with hemiplegic migraine. He gave me absolutely everything both on label and off-label to help treat them but nothing worked and I was on very serious opioids with numerous hospitalizations on Demerol drips. In 2008 the doctor put me on Lyrica and and I went 11 months without a migraine then got diagnosed with MS. Unfortunately it was common and still is in many cases to dismiss women's symptoms as nerves or psychiatric disorders. If I were you I would get a second opinion from aneurologist who is willing to take the time to listen 2 what you have to say and perform appropriate diagnostic tests. Although I was on anti-depressants for the migraines it is very common for migraine prevention medication to be similar to those for treating depression. Nevertheless if it's not helping you then I would definitely go to someone else and see what they have to say. Good luck

  • I really don't mind taking the anti-depressants, it's been a depressing year! And honestly, I'll try anything to get some energy back and sleep better. I appreciate your words. You all have helped me so much. I've had migraines since I was a teenager and they have gotten a lot worse as I've gotten older. I've put it down to hormone fluctuations and sleep problems, which is probably true on both accounts. Are yours under control now? Migraines are miserable, no one understands unless you've suffered with them, the worst part for me is once I have a migraine I'm looking at 2-3 days of pain and not much will help.

  • Welcome to MSAA! I'm so sorry you're having such a horrible time with all your symptoms and the disbelief of the doctors!

    I guess I was really lucky when I was diagnosed, as I only waited a week for the diagnosis and none of the doctors questioned it. I was almost 38 at the time - that was 26 years ago! At that time, treatments for MS were few.

    I'm stunned that your neurologist would say you were too old to have an MS diagnosis! I've heard/read of people being diagnosed in their 60's and 70's and also in their teens! Also, I don't understand why he would stop at an MRI of the brain - I've always read that plaques can show up in the spine as well.

    It seems these days that we have to be our own doctors and researchers! With that in mind, it would definitely be of benefit to record all your symptoms and their duration/severity. If you have a friend or relative that has witnessed these, maybe they would accompany you to the doctor's to 'back you up'? Armed with a journal and a witness, the doctor might be less inclined to dismiss the existence or severity of your symptoms!

    I hope you don't allow ANYONE'S doubt about what you're going through make you feel like a hypochondriac or 'invisible'! If your doctor prescribes tests, you have a right to ask for details (what they're for, what's involved, what outcome can be expected, etc.) and if he ups your medications, please ask about his reasons, his expectations and what side-effects you may experience. If he gets upset about your questions, it's definitely time to find another doctor!

    I've had 'excellent' neurologists that were virtually useless when it came to accepting reality and doing something about it! Remember - this is happening to YOU and you deserve to receive the care and attention you need!

    Good luck with all of this and please let us know how you get on!

    Take care,

    Anne

  • Thank you so much Ashirva! Your words helped a lot this morning. It's hard. Last time I was at my PCP, I told him to look in the computer, I've been with the same medical group for 25 years and have never been in and complained more then once a year in all that time, usually even less then that because of being cared for by an ob/gyn. I feel like I'm standing on my head trying to prove I'm not a hypochondriac but my symptoms are so transient and I've ignored a lot of them the last year hoping they would go away, when I probably should have been recording them. I'll have to start now, only because it's been so much worse the last 6 weeks. This entire thing has made me realize how easy it is to be put down as a hysterical, hormonal, woman, who needs to calm down. I find it very easy to put myself in that same box and question it myself. But I live in my body. It's why we die of heart disease though more then men and why we die in ER when men live because even though we have the same rate of heart disease they don't even check to see if we are having a heart attack. I read something that medicines aren't even tested on us because we are too hard of subjects with our hormones and chances of getting pregnant, so all the medicine is tested on men, and we are probably being under and over medicated. We've come a long way but sometimes it's still hard (for me at least) to raise my hand and say, wait a minute, I really am not hysterical, I really am having problems over here.

  • I can't thank you all enough for your words to me. Whatever my outcome, you have helped me tremendously. I ended up taking a flexeril last night due to my leg muscles tightening and my left hand shaking so badly. This morning both are a lot better and I slept well. I'll see if at the end of the day either are back but I did start a notebook this morning and am backtracking with at least my legs and my left hand so when I go in to my neurologist I can tell him when and what's happening. He will listen to me, I just don't know if he'll dismiss MS again and not test further for it.

    I brought my mother to my last appointment and I'll bring her again. She helps me say what I need to say and I feel like brings some backup to what I'm saying. She's a very level headed intelligent person and I've never complained about anything before in my life, she knows me.

    Thank you all again, I feel a lot better this morning because of all your words! I will change neurologists if I have too. You have helped me realize that it isn't just "me".

  • I'm lalso

  • I'm also new to this site and in my opinion you need to get a second opinion right away. You are not too old to be diagnosed! I just got diagnosed in August 2016 and I'm 68yrs old! Do your research online here, Mayo clinic and Medline to educate yourself. Definitely get a new neurologist.. Best to you.. Lynn

  • Wow! Now I'm really wondering why he told me I was too old?? He is the top neurologist here or so I thought. He has a phd and a MD from Harvard. I will really have to rethink staying with him if he brushes off my MS concerns again.

  • Most are diagnosed between 20-50, I'm the oldest my neuro had ever diagnosed. I'm a little disappointed in my dr because he doesn't answer my questions thoroughly. I've learned more doing research on Internet. Have you started therapy? I should be starting Tysabri infusion the first week of October. Good idea to keep a journal of thoughts, symptoms, etc. Best to you, Lynn

  • I haven't started therapy, only for the migraines. I'm hoping once he rules out everything else we can talk again about MS. He told me the average age was 33 and I'm 44, over a decade older. Although I certainly have learned a lot on this post!

  • I was diagnosed with a brain & thoracic spine MRI. Just hope you can get some rest and peace of mind knowing there are kind, knowledgeable folks here..Lynn

  • I definitely suggest a second opinion! My doc was the director of autoimmune, and I think he is out of touch with MS disease specifics & current medical information. I'm in the process of transferring my care. Good luck to you.

  • Cheshcat, i'm Fancy1959 and I would like to welcome you to become a member in our chat room. I, personally, am glad that someone else here has lost her mind. I read a bumper sticker one time that summed up my life. It said "Of all the things I ever lost I miss my mind the most!"

    My, but you have had a time of it Cheshcat. Migraines, vertigo, severe vision problems, dizziness leg tremors, etc As far being to old at 44 for MS to hit, I was knocked down by MS at 53. My neurologist did say that he thought I had it for the past eight the 10 years. but you have had yours for a bit too.

    No doctor is infallible, not even the head neurologist. You need to be in charge of your health. You know your body better than anyone else. Many of the issues you are facing are issues that can be MS-related. What kind of MRI did your neurologist do. Did he do the head the neck and the spine? Or just the head. It is not complete unless he does all 3 because lesions can affect many things from your neck and different parts of your spine. I know I have many of them. To be extremely definitive on the issue whether or not you have MS your doctor could order a specific spinal tap. The enzyme or fluid in it show specifically whether you have MS or not.

    It seems that your symptoms are increasing and your health is declining with the current treatment your doctor / neurologist has you on. MS is truly a secretive little invader that can get in and do lots of damage before it is diagnosed and detected. If you truly doubt the care you are receiving you must demand better. Spinal tap's are never any fun, but request, and if that doesn't work, demand one be done to check for MS. Please keep me informed with your health issues. Again I invite you to join our chat room. From all the replies you have received I believe you have figured out we have a great group of individuals here that truly care. Please, please join us!

  • You all are fabulous!!! I had absolutely no idea I'd get so much help from my post!! I would love to join the chat, I didn't realize there was one, thanks for the invite :).

    He only ordered the head, not neck or spine. I'm assuming because of my vertigo he was only looking for a tumor but like I said, he doesn't always share a lot with me, and I'm sometimes lost what exactly he's ordering and for what.

    My legs and hand was better today overall, probably because I slept better. That one hand still shakes if I hold it too long, even if I'm rested. I'm going to keep calling and telling him what's going on, even if I start getting labeled, I really don't know what else to do at this point.

    We need shirts that say "of all the things that I've lost, the one I miss the most is my mind!". In some ways it feels like my body is playing tricks on me on purpose, like trying to drive me over the proverbial edge.

  • No Doctor has no right to keep test results or your records from you that he did specifically on you. You pay him diagnose you and share everything with you, The Good, The Bad, and The Ugly. (Ha,ha!) If you don't understand, do not let him leave the room until you do. He works for you, and it's his job to help you to understand. Of course, the nicer you can accomplish this, the easier it will become to build the relationship of respect and information sharing that you seek. I often notice an improvement in basic MS symptoms when I've gotten a good night's sleep. Oftentimes I don't sleep well. I typically sleep 3 to 5 hours a night. 6 hours is a good night for me.

    Don't bother calling your neurologist just make an appointment to go see him face to face. When you have to go through a nurse and there's a buffer between you and the doctor or even if it's the phone line that's the buffer between you and the doctor it's too easy to ignore problems or symptoms you have. Especially if he's not buying in. Have you ever done physical therapy? They can do a baseline study on you such as walking speed, dexterity of hands, etc. that compares you to average women your age. That might be something you think to ask your neurologist to go ahead and get you set up to go to Physical Therapy. Most insurance covers at least a certain number of visits a year. If their results show you score low in certain areas, it would give you more proof that you really haven't lost your mind!

    Good luck and touch base back to let us know what is going on with your health.

  • Great idea on the physical therapy!! I'll ask about that when I go in.

    He's just not friendly for lack of a better word. He doesn't always tell me what he's thinking. I'm sure he'd give me my records or explain things but sometimes I don't always understand and then he's gone before I really get my bearings, he doesn't wait for me to ask questions I guess. He spends a lot of time at the computer and dictating to himself and less time with me. That's why I started bringing my mom. I'm hoping after these last round of tests were negative for a blood clotting auto immune he was looking for, we can circle back to MS, since it sounds from you guys I am both not too old and haven't had the rest of the tests.

  • Love it!!! what size do you want

  • NOOOOO!!! Not over the edge! Don't go there! (I've been there and it's no fun! LOL!)

    It sounds like you're feeling a bit more confident about your situation and developing a stronger sense of self. It's great that you'll start writing down things that happen. I hope you keep getting some decent sleep and keep feeling better.

    Not sure about the bumper sticker... I may have lost my mind, but no one needs to know but ME! And you, of course. Oh yeah... and everyone on this site! ;-)

    Anne

  • I do feel better! Thanks to you all. I woke up after not a good night of sleep and my husband woke me up early. Causing my symptoms to be aggravated the entire day (when I wrote the post). And felt really down, not knowing what to do anymore.

    Last week after seeing my PCP and him telling me to try and ignore my neurological symptoms and upped my anti-depressants, then after that having my legs bothering me so much and my left hand, it puts me in a place I don't want to be in. I guess raising my hand again and saying I'm sorry but I can't ignore my symptoms.

    Whatever my outcome, you all have given me strength. I've always been rock solid, even through hardships, and I don't like how vulnerable this makes me feel.

  • Hi Anne I called my daughter the other day and told her that I was loosing my mind she had to remind me that I had an episode and that It would take sometime for me to regain my composer, i t took me four day to recoup-Ha thank Jesus for her keeping me on the right track loving the support.....I went to and eye doctor the other day she told me that the swelling of my right eye that I needed to go to my Nuero-opt so she can treat me as you know I can't do steroids because of having diabetes so she subscribed me prescription strength Advil to take for this pain, in my right eye so far so good......thanking JESUS always.

  • Katherine, you are NOT losing your mind! I know that a lot of the symptoms that hit us with MS can be 'crazy-making', but you sound pretty level-headed and intelligent to me, so MIND = STILL INTACT!

    Keep on talking with your neurologist, keep talking with your daughter, keep taking whatever helps and keep finding out everything you can about MS. YOU are not MS... it's something you have.

    I didn't realize that people with diabetes couldn't take steroids. What is the reason for that? Might be a blessing in disguise - every time I've taken any steroids (intravenous, injected, oral) I've had side-effects (some pretty bad) and they've never helped much.

    Anne <3

  • Steroids causes spike in your blood sugar my runs about 110-120 , but when I was on the steroids, it was as high as 500 which is comatose state I would not go to sleep scared that I would not wake up so I ended up weening myself off of it, it also affect your mental health as well so it is not for me.

  • YIKES! Sounds awful! I'm glad you decided steroids aren't for you!

    Anne :-)

  • Yes they aren't for me....but this prescription strength Advil is helping me alright. My other Doctor, Tang is sending me to another Doctor that has worked up under her, she is also an Nuero-Opt... named Dr. Woon hope she is as good as Dr. Tang we will see. I have started my juicing and I do feel pretty good researching, foods that stop the swelling in the brain and in the body, plus the juicing detoxes the body, it will bring my A1c back to normal we will see in about 3 months. I will be laughing all the way to my PCP office.

  • Cheshcat, oh yes we do........We all went through similar yet individualized processes of trying to figure out what was making our bodies become strangers to us. Perhaps that is what makes this chat room so successful. We can listen and relate first-hand experiences you are having because we have had them too. Keep your chin up. Go into the neurologist with a list in hand of any questions and symptoms you are currently having. Do not let him leave until you are satisfied you understand what is going on.

  • Thank you! I do feel less alone and more confident that it isn't in my head or stress/anxiety. I have had a lot of stress in my life but my body has never refused to work correctly over it. I said to my mom I keep knocking things over and not setting my cup down right, so things spill but I don't know what's going on, she's like you mean you are blacking out, no no I mean you are going about your normal day and your body stops doing its normal function and I don't know understand what happened. I know I wanted to set my cup down correctly but it didn't happen and I have no idea why. It makes you feel like your brain and body have come unconnected and short circuited somewhere along the way. Only not every time, just little short circuit jolts. Like, psych! Thought I was going to pick that up, nope, knocking it over! This sounds like chat room material ;) - I'll work on finding it in the morning!

  • Chesscat,

    I was diagnosed at 44 after years of migraines and weird symptoms. At 41 my MRI was normal. After 3 years of intensifying migraines, the next MRI was a definite MS diagnosis. Although most neuros aren't relating migraines to MS episodes, the Mayo Clinic doc that diagnosed me said that the horrible migraines during those 3 years are probably what left the brain spots.

    I'm 55 now and glad I got the MS diagnosis, as now I have specific meds for each of the weird symptoms that I had all along.

  • I have read that migraines and MS can both leave the spots on your brain. I wonder how they tell them apart or if it's only symptoms they go by? I have read over the last few days how long some people have to wait for a definite MS diagnosis and that's a little daunting. I was hoping it wouldn't be such a long haul. I guess it is what it is but if there is medication to stop further progression I would like to know if I have it, which is the only reason I'm going to just push ahead and hope I don't come off as a hypochondriac. I've learned more just on this post then I did at my neurologists office!

  • Luckily, or unluckily, I had a major exacerbation where many symptoms came on at once: double vision, loss of balance, leg numbness and heaviness, major migraine, and a tightening around my girth. I went to the ER, and after a long, long MRI and a spinal tap, I was diagnosed within a few hours. They said that I was lucky as I "presented" with all of these symptoms and they could make a clear diagnosis. Prior to that episode, migraines were my only problem.

  • I'm not sure if that is lucky or unlucky. It is a bummer for it to drag out like this. On the other hand there is still hope that it isn't MS for me. And maybe because it isn't so clear cut, maybe that's good? I sure don't know. I'm sorry you had such a hard presentation. I guess then you were able to start meds right away? That's the only reason I keep pushing to know, I want to do whatever treatment is for whatever it is that is wrong with my body.

  • Yes. I was able to start meds right away. Maybe yours isn't MS. But, if it is, at least there are meds. I hope you can find a neuro that can get to the bottom of it quickly for you.

  • That's the reason I keep pushing, besides to obvious that I'm suffering and want to know why. I want to catch it as early as possible to hopefully prevent any more damage, if it is MS. I should have my spine MRI in the next few weeks and that should be really helpful. If it goes nowhere I am going to have to move and ask for a second opinion. If nothing else to put my own mind at ease. I stuck in my own symptoms for the first time today into 2 different symptom checkers (where you put in all your symptoms), a few that came up are obscure but my neurologist has one by one eliminated them and one of the only left is MS. I sort of wondered, since my neuro is so unchatty, if he's still just eliminating everything else first. I keep getting worse, which I am very unhappy about, and don't want to continue down this course, not something I'd want but in some ways I guess getting worse will at least figure out the damn problem! Thanks for listening <3 - on to more tests for me!!!!

  • Have they tried you on IV steroids yet? When my first really bad exacerbation kept snowballing and I ended up in the ER, IV steroids are what stopped the whole process. The MS meds help to prevent new attacks. The steroids stop attacks once they start.

  • I'm still stuck in testing hell/limbo. So no IV steroids yet for me. From last Friday to today I've lost probably 50% function of my left arm, guess at least it's not a leg and I'm right handed. It's too weak and heavy to do much anymore, apparently I used my left arm a lot. I called my neurologist this morning again. More tests ordered. He gave me flexxeral and told me to take it every night for my thigh and groin muscles that get locked clenched up, it does help but sometimes by the morning it's worn off. I'm obviously feeling sorry for myself this afternoon!!! I should get my spine MRI done within a week or two, sure hope that shows something useful. I have no idea what other blood tests he could have possibly ordered, I feel like I've taken every test available!

  • May I advise you to get another doctor. I pray it's not MS. I pray that whatever is ailing you can be cured. You know your body, so, no, your not crazy.

    Prayers and blessings

  • You all have made me realize I need too. I wanted to before loosing site in my right eye. I should have done it then. I think the only thing holding me back is the feeling I will start be marked down as a difficult patient. I don't know what else to do though. I have felt very unsteady today. It's not even necessarily my vertigo, I think it might be my left side in general. I don't know anymore, I don't understand what's happening anymore to my body. Not having your brain and body working together as one, 100% of the time, is a very odd feeling. Whatever my outcome, I very much appreciate everyone taking the time to make me feel better this weekend <3.

  • I'm only an RN, and I don't like to give direct advice. We each have to do what we can live with. You deserve answers. You deserve quality of life. I can only imagine.

    I want what's best for you and all of my fellow earth mates. Please, see some one else. I'm sorry you're suffering. Geez

    Blessings

  • Thank you :)

  • I do have weakness in my left hand and a small tremor (per my neurologist tests in his office this morning), my neurologist wants to test for carpal tunnel (EMG) and I have that scheduled for next month. I also have an MRI being done for my spine (image has to call me to schedule) but not yet one for my neck, he wants to rule out spine first. He still is not looking at MS. I guess I'll see if there is anything on this spine MRI and go from there. At least he's ordering stuff I suppose. He did give me Flexxeril for my thigh muscles that I can't unclench, it was terrible last night, I couldn't make them stop clenching, it was borderline painful, not really painful per se but it's hard to have those big muscles clenched up like that for that length of time, I guess now I have a bottle of flexxeril.

    Thank you all! I'll check the board but since my doctor isn't even looking at MS right now, I won't post again until I get some better answers. I will update if I ever get a diagnosis of course, whatever it may be. I hope it's not "we have no idea".

  • I'm curious as to why the neurologist wouldn't do an MRI of your neck AND spine at the same time. It seems he's taking 'baby steps'... meanwhile, you're in agony and wondering what you have! I've had MRI's of my head, neck and spine all at the same time and it's no big deal.

    Anne :-(

  • I think because he's still convinced it's not MS. I think hes looking for a reason in my spine for my leg tremors and clenching/locking of my thigh and groin muscles (he gave me flexxeral to take every night). I finally tracked down what other autoimmune he's testing me for (my mom loves this doctor because he's smart and always thinking, I just wish he communicated with ME). It's Myasthenia gravis. I go in today for those blood tests and it looks like the EMG tests he's scheduled me for also tests for it. In the meantime I've lost about 50% function now in my left arm, which I did call his office to tell him. It's just feels very heavy and weak at this point. I'm going to just keep calling and reporting new and worsening symptoms. I should have my MRI in the next week or two, I won't have to wait long for it.

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