I am really torn between freaking out or going to bed and never getting up again. My neuro for the last 3 yrs specializes in MS....and she accepted my old Anthem HMO insurance. Last yr she seemed overworked or something because two appts in a row she didnt believe that she had done or said something only to look it up and see that she did. My Mom goes to all of my appts with me and she insisted I find a new dr. I had wanted to go to the MS Center but they didnt accept my ins....at the time. I now have a PPO and yesterday was my 1st appt. YAAAY!....Nope. After looking over all of my MRIs, and giving me a thorough exam AND having me "tell my story" from the last 10 yrs of symptoms, specialist visits and tests, he seemed confused as to how I was diagnosed (even tho I also had a relapse, optic neuritis last yr too). He was confused because all my bloodwork from 2016 that my old neuro took to rule out other auto Immune diseases seem to have disappeared from my records. The order is there in my visit summary from 3 yrs ago and the test result tab is there but it states "information is no longer available". And even with my mountains of symptoms, over a decade worth, & relapses and the MRI readings from the Radiologist, and my dr's notes, he isnt convinced I have MS. Let that sink in! So I have to start from scratch. On top of the ANA, ACE and Lyme, all of which I had done which helped narrow my dx to MS. He's also testing me for Sjogrens Syndrome. He talked about it quite a bit. Like wtf. And so I got a gallon of blood drawn for all the lost tests and a few extra. Now, over the next 3 wks I go for another set of MRIs on brain, neck & lower back, and I have to have another round of eye exams and tests, a 5 hour adventure, and a follow up with neuro on the 24th. For the 1st yr and a half of my Dx I asked my old neuro (who also gives MS lectures) multiple times if she was still sure its MS. I had been searching for an answer for so long I just had this feeling that one day I'd walk into my appt and she'd say "I'm so sorry, we've made a mistake. Upu dont have MS". My mom insisted it's because I was in denial. But I still couldnt shake it. Even tho i take my meds, my 3 weekly Copaxone shots, and and feel like ass almost everyday.
, i was still worried i was going to have my Dx taken away and I'd be back in the land of the unknown. I switch Neuros and son of a gun if my worst fear didnt sort of come true! Now I'm totally floored! I wear foot/leg braces to keep me upright, I've done physical therapy, I've missed out on so much due to fatigue & heat intolerance "from my MS" I've raised donations for MS causes from co workers, friends & family in "support of my MS"... Am I going to have to tell everyone, "Oops, sorry, I dont really have MS...Yes, I know I wear foot braces....yes, you sponsored me for the MS walks...Yes, I've been cancelling engagements and missing special occassions from my MS fatigue...." How do I explain all of that if i dont in fact have MS?
The new neuro also said I may have a couple different auto immune issues going on even, that when combined behave very similar MS. Like Lupus & Sjogrens. Oh and he prepared me that he may want to do a lumbar puncture as well. My old neuro didnt do it because she didn't think it to be neccessary. And said that it's not that reliable regardless???
So as the new neuro is wrapping up our appt yesterday, he said to stay on my Copaxone shots and other meds for now but that he may want to switch me to Aubagio later. Wait....what? What happened to not being convinced its MS? Why are we already talking abt switching MS meds before we even get the test results? My head is spinning now (more than the norm) and I spent almost all day on the computer doing research.....just as I did before my original, long sought after Dx. I've been in fear for 3 yrs that yesterday would happen and then it sorta did!
Anyway, thanks for being here for me to vent to.....sorry for the mini novel....l
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cassielynn71
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Yikes! It sounds like you have a Dr talker and they were thinking out loud a little too much. The repeat tests are a huge hurdle! Maybe the old doc didn’t get the LP on you then because the other autoimmune issues were negative on the labs that are now missing 🤷♀️
I hope all this hassle results in some kind of help where you don’t have to feel so bad every single day. Please post back and let us know what happens.
I will for sure. He had his PA in with him. She made a comment to us that I didnt like hearing, nor does it sound accurate. But who knows...She said that 50% of patients that come to them end up being misdiagnosed with MS. 50%? Doesnt that sound awful high?
I think there is a recent trend in the medical world that pushes the idea that many cases of MS have been misdiagnosed. I hope the pendulum swings back to the middle, so patients who have MS are not told they don’t have it, when they actually do. I’m sure there are some misdiagnoses, but 50% seems quite high. Keep pushing for answers!
So true. I’m fortunate to go to the UCSF. MS CLINIC. Often there is a group graduate student or student sitting here on the appointments and one time one of the students assisted the doctor and pulling up additional information on my MRIs that evidently my doctor was having difficulty doing so and really he really appreciated the help. I did too!
I don’t believe any medical professional who is quick to throw shade or give themselves props during a patient focused conversation where such a comment, whether true or largely inflated, is useless and distracting 🙄
I think in your case, it’s just baking your noodle more over the possibility that your diagnosis, treatment, and journey thus far have been wrong. That’s a terrible thing to have to sit with for the next few weeks 😵🥊
Wow! What a whirlwind you must be in! I’m so sorry about this.
I have frankly worried just a little that I may be told the same thing when I get up to OHSU. I can’t imagine what you describe as being something else, but maybe this will firmly confirm your diagnosis and lead to a better treatment. It’s just hard enough to accept the diagnosis in the first place, only to be told it may be something else. I guess that if you don’t have MS, you can find out what is really is and get the correct treatment.
I will. And thank you. I dont post often. I'm more of a voyuer here. But other than my poor mom, I didnt know who better to vent to since yall could probably empathize a bit better than a perfectly healthy person (is there such a thing?)....
This is the perfect place to vent. Even if we may not be in exactly the same situation, we can truly empathize. I wish we could fix one another's problems, but it's so good to have people who understand to help share the load a bit.
Hi, it’s good to hear from you but I am sorry that you are going through such a medical upheaval. I hope and pray that this new guy knows what he is doing, what I don’t understand is why he would mess with your ms meds when he doesn’t even think you have ms. I can see and understand why you are in turmoil. I hope that he does find out what ails you please don’t be a stranger, take care, blessings Jimeka 🤗
Thank you. Yes, I already confuse easily, lolol! And then to give mixed messages. The thing is, this dr is THE guy around here. So I was so excited to be able to switch to him. My husband said maybe hes just covering all the bases. But SAY that then....no? Sigh....I'll be sure to post the outcome.
I am so sorry you have gone through all of that. My MS Neuro continues to tell me also how difficult it is to diagnose MS. And he has been practicing over 25 years, I guess that’s why they call it practicing! With the new testing and techniques, hopefully you will get a definitive answer.
I am sorry to hear that you are going through this. I had a similar experience. My first neurologist (30 years ago) kept increasing my Klonopin (clonazepam) to dangerous levels for muscle spasms in my back. Then every time I had the slightest flareup, she would admit me to the hospital for ACTH treatments for my relapses). I couldn’t take another one; I loss significant weight and almost had adrenal shutdown from this type of treatment.
So I decided to go to another neurologist in my area and he started to doubt that I had MS because I was African American and didn’t understand why I was in so much pain from the muscle spasms in my back. This was a nightmare, and even after I repeated my MRI tests for Brain, Cervical and Thoraxcic spine where the results stated I have Multiple Scelerosis. He wouldn’t even refill my original baclofen prescription for the painful spasms.
I finally found a neurologist at the University of Pennsylvania, and she had been my neurologist for the last 25 years. She looked at all of my records and made me take maybe one test to update in my record. I thank God for leading me to her. Yes, I have MS. Yes those paraspinal muscle are painful. Yes she increased my baclofen. And at that time she put me on Avonex. I felt wonderful!!! I am grateful for her care. Now I am still on Copaxone. I have had several surgeries with her, and tried different DMTs.
I pray you find the right neurologist for you! Hang in there! You are not crazy. Do not let your physicians patronize you. You have already have enough data to say you have MS. You may collect some more with this neurologist and if after all of this and there is more doubt. Go somewhere else that isn’t doing so much research. Find the neurologist you like based on what you read about him or her. And if possible, go to that neurologist. That is what I did. I read about my current neurologist before I made any appointment. And I prayed. With love, Tonyia
And Cassielynn, since 30 years with MS I have developed other auto immune problems, like Lichen Simplex Chronicus. I had such dry mouth/eye that we ruled out Sjörgen’s disease but still say something is wrong. I have been retested for Lupus because of my skin problems. I have been retested for “Stiff Man’s Syndrome” because my spasticity and rigidity has gotten worse. I have tried Botox Injections. With all these DMTs and better health care. I think physician are learning more about these auto immune diseases. They wish it was simple, it is more complex.
My heart goes out to you in your struggle for an answer. Since it is very obvious that you are affected/afflicted by something serious, it doesn't much matter what name is given to it. What's important is this: no one here is going to say beat it, this is only for MS diagnosed folks,; MS is a weird disease and the more that is learned about it, the more mysteries it presents; we all know that no two cases of MS are the same; and fretting over a name for what is wrong will not make you feel better or help anything. Just because the new neuro spoke off the top of his head, doesn't mean he's correct. Remember that you are in charge of you. You are the ultimate authority on you. You may need to keep searching for answers to the question of what's wrong, but the important part is to find help to ease the symptoms and stop the progression of whatever has gone awry no matter what it is named.
Thank u so much. And ur right. As long as I'm at least continuing to receive meds that are helping many of my symptoms then I need to find comfort in that positive aspect of all this ❤
sorry for all of the bs ...they like to say they are doctors but again we wonder ...hopefully someone in your area knows of a good MS doctor that is up to date on it and helps get you going without all of the bs...have a great day with some laughter at this lame doctors...i am sorry but just can't believe all of the stuff and put you on the meds sure makes the doctors not look to smart ..again sorry for calling names but it is terrible what they can put a person threw and not be able to go on past tests ...love and happiness you can have on your own don't let them get you down ...your a better person ....
oh boy,You just confirmed what I have always suspected,dr's just guess,I always thought patent heal thyself.you know how you feel, don't let them talk you out of it.You have got to have tests repeated,sorry, that is the only way to know,including mri and spinal tap.I would absolutely load up on all the information I could get,and use it with them.don't throw in the towel yet,there will be an answer for you.let us know
Similar thing happened to me. I was diagnosed with MS b/c of a positive lumbar puncture, MRIs, bloodwork, symptoms. Changed docs and had to do everything (including the LP) all over again. Guess what- he diagnosed me, after all the stress of all those tests, with MS. I now have a new doc and luckily he isn’t putting me through all that. I’m not doing another lumbar puncture! Good luck to you! Don’t be surprised if you go through all the testing just to confirm your MS. Kinda of a “better to know the devil you know than the devil you don’t” theory.
I have had an unexplainable issue with accepting that I have MS. Yet, I use it to explain my lack of energy, headaches, nerve pain, muscle spasms, vertigo, tremors, etc..I do my shots & take my meds....but somehow I have always questioned my Dx. And NOW that it's being questioned by an expert I am totally panicking that I've been living a lie and and now I am no better off than I was 3 years ago. It's crazy really.......
My daughter was given a provisional diagnosis of CMT by her local neurologist. He referred her to a specialist who told her she did not have CMT, but who ordered genetic testing anyway. She had to wait months for the testing, after which the specialist said he guessed she did have CMT after all. She will never go back to that specialist again.
I suppose we have to learn, usually the hard way, whether any doctor, specialist or not, really knows his or her stuff.
So sorry that you're having to go through this runaround. I hope you can have a trusted relationship with your new neuro and move in the right direction with him/her. working with an MS specialist can help a lot.
I can't image the frustration of having to go through another round of tests and having tp wait. Maybe you'll get a clear cut answer. All the questions you have, I'll ask your neuro as well. You deserve answers.
I would also not give up on trying to get your old files. So that your new neuro can have the full picture.
Cassielynn, I too am very, very sorry you have to go thru all the Doc. B.S., 💉💊the only kind of B.S. I want in my life is A Bridle & Saddle!🐎🐎🐎 😂😄 Now, w/ all the major research we all do daily, kind of make us our Own Doc's in a way, Please go get Ann Boroch's books, " Healing Multiple Sclerosis, &" The Candida Cure", those two books are absolute life-savers, whenever we have Fungal or bacterial overgrowth in our small or large intestines, we get what is called Leaky-Gut Syndrome & it causes a plethora of auto-immune diseases!😜 & when we clean out our leaky-guts, our immune systems stop attacking our own bodies, & begin to heal. I ; My good friend on here Iwczs, & 1,000's of others have really, truly, Greatly benefited from these cleanses! I am in a full remission now after almost 1 year of being on it! Please do your precious body, & self a favor, try it! Your Brain + body will thank you big time! & you'll feel better! Much Better!💗👍😍😘😍 luv ya! Jazzy🌹💜
Whatever the answers are cassielynn71 know that your not living a lie! I can't imagine what your feeling right now, xcept confused. 🤗 Just think of it as starting all over again.
I'm really glad that your new neuro is taking a great interest in you! And keeping you on your Copaxon! Better to be safe than sorry!
When is the spinal tap? And tell them you want it done in x-ray? Or radiology? I can't remember but will find out!😂
I guess I'll find out abt the LP when I go back in 3 wks. It's crazy, I had a spinal 25 yrs ago for a c-section, after 28 hours hours of med free hard back labor. I had an epidural (that only numbed my right side) 23 yrs ago, and went thru two successful, med free natural deliveries 21 and 18 yrs ago. And multiple surgeries since then. You'd think I would be fine with this LP....but NOPE! I am really not looking fwd to it one bit, lolol. And yes, please do let me know which to request it to be done in. ❤
I am so sorry for the garbage you have to wallow through. Speak up! Tell the doctor his bedside manner could use some improvement! Ask him WHY doesn't he think it's MS? What information is he missing that would convince him? When you see him next have a list of questions written down so you don't forget. I have even gotten permission to tape doctors because sometimes it's so hard to process that you just need to hear it again to understand what they're saying. Good luck.
I hear ya. I bring my Mom with me to every appt. I have such anxiety for some reason when I go to the doctors. I don't think I've always been that way....? Anyway, I remember only about half of what is said so she is my back up brain, lol. We believe that the lack of evidence of lab work and what he didn't or couldn't see on the MRI's was why he was questioning the Dx. He and his assistant kept zooming in and out in multiple areas of 3 or 4 of my brain mri's and again on my neck ones kinda shaking thier heads. All the while he's asking me questions about my symptoms. It was hard for me to keep track of what I was babbling about and watch him study my mri's at the same time.
I've read the radiologist reports myself and the typed summaries were rather convincing but after seeing my brain mri's that he was studying I would wonder as well. I didn't see anything enhancing and it all looked rather healthy to me, lol. I am not a Neurologist or a Radiologist so I obviously don't have the trained eyes and knowledge.....Still.....I am super curious/on edge as to what this new lab work is going to say....
If you do have MS it's not the end of the world. You're already living with these symptoms and perhaps they can fine tune your meds. I take Aubagio and have been stable for several years. For most people this is quite do-able. For me I was just glad for an explanation of why I kept falling down!
That is exactly how I felt. I was relieved and happy to have an answer, to be able to stop researching....And at the same time (I wish I could explain it w/out sounding crazy, lolol) I've felt like I've been misdiagnosed. That fear that someone is going to catch the error and realize someone screwed up and they will then have to take my dx away and I'll be thrown back into the world of the "unknown" has hung over my head for 3 years. If they do in fact conclude that I do have MS, I think I'll be able to finally believe it 100%...If they conclude it's not MS...lord, I hope they have a good idea of what it actually is......
I feel so sorry that you are going through this mess. Your previous doctor's records should be available to you through the medical records department of the hospital they were associated with.
If you haven't had a spinal tap you need to. So much can be discovered on a spinal tap. It can confirm MS as well as other autoimmune diseases.
Hi, I'm going through very similar circumstances...was dxed 21 years ago. New neurologist looks at all my MRIs and because no new lesions ordered up all tests. I haven't been back since. Dr. kept on insisting on spinal puncture which I won't do. Dr. tried repeatedly trying to trick me into it. Dr. also told me there is no pain with ms! All my increasing symptoms made me pretty alarmed and now this? We have only 2 neurologist within several hrs travel...both have very bad reputations and Dr. was second try.
They work together and despise patients,which truly shows. In fact I felt completely intimidated by Dr.s scowl and could hardly stand being there.
Other medics in area say they are never pleasant. I'm just avoiding and have no other dr. Options at this point...not sure what ill do.
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