I can't remember if I wrote but my neurologist has basically decided to wait to see if I have another flare. I'm fine with that for now. Since I don't have a MS diagnosis, my official diagnosis right now is that my central nervous system is mis-firing and it's neurological based. Have no idea what that means but ok.
So my question is I've actually been feeling better for a little while now, just dealing with the lingering stuff (basically my left side as always, my calf cramps badly and my foot curls in, and I get - I don't know how to describe it, heavy left limbs I guess, I have my freezer burnt spot feeling, and I have myoclonic jerks but besides that a lot of the other stuff has calmed down).
But I came down with a cold. It's nothing exciting, just a cold. But all those remaining lingering symptoms are worse now. They are actually mostly ok to deal with, I just ignore them and take my medication but since I got the cold, they have just been more constant then not.
I should probably try to find a general neurology forum since I haven't been diagnosed with MS but I figure if there's anybody that has knows about central nervous system diseases, it's you all
Hope everyone is doing well!!!
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cheshcat
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Thanks Jimeka! I asked and he said it's myoclonic jerks that are neorologic based. I had one when I was hooked up to the test they test your brain for epilepsy (the test they cover your head in electrodes). He wants me to try another anti-seizure, even though I don't have epilepsy. Just the CNS stuff and the myoclonic jerks. I think it caused my test to be abnormal.
I keep track of my sleep through an app and just realized I've slept really poorly the last few nights. So that is probably the problem. Lack of sleep really effects me!
cheshcat you are certainly welcome to stick around and chat with us. I believe there are quite a few in the process of being diagnosed or on in limbo as a diagnosis is being sought.
cheshcat you know your always welcome here! I'm curious on what kind of Neurologists you had, and whether you feel as though you need a second opinion?
I hope you feel better soon!
Jes🌠
ps please don't wait for symptoms to get to bad before going to the hospital!
I switched neurologists on the recommendation of this board. Unfortunately, by the time I got in to the new one I was on the upswing of feeling better (well I mean fortunately too! It's not like I enjoy all the symptoms). And he didn't have as much to work with, just my lingering symptoms that won't go away. He's very young and just moved here from back East (I'm in Oregon). He keeps up to date on all the newest information and research, which I like. And most importantly I can talk to him and feel like he hears me when I speak. He explained my TAC migraines (trigeminal autonomic cephalgias) to me and the first one never even did that, even though he knew that's what I had.
I would like to ask my primary care to send me to the MS clinic in Portland, OR. But I'm not sure he would, I haven't asked. I've been attempting to not sound like I need a psychiatrist versus a neurologist but I think that ship sailed anyways lol. Oh, well.
cheshcat did this Neurologists want to test you for MS? MRI's and such? I'm curious ☺ and what is that saying? The only answer you get when you don't ask is no? There is no harm in it.☺
We haven't talked about it yet. I should have asked him outright, this entire thing I feel like I really fell down on the job on the patient part, I've just never needed doctors before or I just ignored things, I always hated to be a complainer. My Mom was an RN at the hospital for 40 years and she really has a "your doctor knows best" attitude, so it's always felt weird to try and tell them what the problem was. I got the feeling he wanted to see if another anti-seizure med would calm down my central nervous system and myoclonic jerks before moving forward with more testing.
There in lies part of the problem, I have been doing better, outside of my lingering stuff that it seems I'm stuck with (for now?). Which is why I think he wanted to wait, to see if I got worse again.
I think he will order all the testing for MS, so I was just going to see how I feel and go in if/when it gets worse. For some reason, I didn't realize there would be continued damage if I was stable for now. I figure I will just ask about a referral to see the MS clinic and see what he says? Worse case he says no.
cheshcat l don't wish this on anyone! And l pray you don't have it!
As you know from reading these posts, there are so many things that seem to mimic MS that what your Neuro is doing is ruling everything else out 1st.
It never hurts to ask that's for sure, but ask your Neuro that you have now? Although, seems like maybe your not getting the answers you need. Are you keeping a journal?
I'm alot like you, l never go to the docs unless l absolutely had to! Then my mother would be mad at me 😅 Cause l wouldn't be just sick, l would be deathly sick😁😅😅😅 Such is life. I had stuff to do! ☺ Seriously l don't have time or the energy to be sick.! My mother used to be an RN also, and she thought she always new best, which meant l wasn't sick anyway, til l was in the hospital 😅
I hope the meds are working for you!!! Keep track of when you started taking them and how you think they are working for you
I plan on asking the neurologist both about ms and the university ms clinic.
My new neurologist wants me to keep a diary. So I have been keeping track for him. I really notice a big difference when I miss sleep, have a lot of stress, or apparently get sick. Many of my problems have resolved from my bad flare last fall but what's left is here now and it only depends on severity. I have an app I keep track of and you can print it for your doctor.
We are very similar with moms and hospital visits 😊
I know when i am sick or have a fever, i have a pseudo-flare. I havent MS long, but i have learned that heat - even heat from a fever- while make ur symptoms flare
The way they used to test for MS was to put a person in a hot bath. If that made them have symptoms then hey - its MS!
Now it is gotten so complicated that people have to wait forever to get a diagnoses. Which means more time without DMD's.
Thank you! Yes, I've had a low fever. I always wonder about the hotness test. I've always joked I'm just allergic to the heat. For me, that has been with me since I was about 14-15 years old. I remember feeling so sick laying out in the sun with friends and didn't understand how they could lay in the sun like that. Eventually I just avoided being hot, as I got older. My only real flare though before these last few years was when I was 20 years old. Then it went away after a few months and I spent my 20's and 30's pregnant and/or nursing kids. And had some problems that started again when I was about 24 but it really only got worse around my period but no one knew what it was so I stopped asking a long time ago (I kept asking my OB/GYN's because it happened during my period, I assumed it was cycle related, maybe it was/is, some of these answers I guess I'll never have).
That's a long way of saying lol, I never have understood the heat problem with myself since I've had that the longest, so I have no idea if it's related to possibly MS or not.
cheshcat , you sound lot like me years ago. Fatigue in the heat/summer, random feelings of numbness, klutzy episodes. I even went to the doctor who prescribed valium. I went on lovely trips but the meds weren't compatible with my job. Then, I had kids. I felt great, but after our family was complete, I started getting episodes of strange symptoms again. Numbness, extreme heat intolerance, dragging my right foot when I walked.
I finally went back to the doctor, was directly referred to a neurologist, and he sent me for an MRI right away. I was either MS or a stroke. By the end of the week I had a diagnosis, and confirmation LP set for the following Monday.
I credit my quick diagnosis to several factors, one being fairly precise record of when and how long I'd had various symptoms. I'd never go to the doctor because they'd eventually go away. However, I found out that pregnancy tends to make MS symptoms go away (mostly) but then they return and can get worse.
Short story lengthened try to recall as many episodes of numbness, myoclonic jerking, abnormal heat/fever related incidents, problems walking, etc. How long did they last etc. Ask for an MRI. Definitely find a neurologist who specializes in MS if possible, and one who listens to you.
Wow. That is so similar to mine. I spent most of my 20's and 30's in a state of pregnant or prolonged breastfeeding (I had 9 pregnancies and only 3 live births). I breastfed my kids 3 years each. They looked for bleeding disorders first because of my pregnancy losses.
I blame myself for lack of diagnosis, I've had to work through my own issues of trying to be assertive. Honestly, I didn't tell my own husband for a long time. After a year of therapy I realize how many of my actions are just an attempt to not get myself hurt (physically). I've been safe all my adult life but I think the trauma from my childhood left me with some very weird coping mechanisms. It worked pretty well, you know, until it didn't!
Neurologist #1 diagnosed me with TIA's last August when I had a relapse but he never ordered more testing. I should have went to ER several times late summer/early fall but I kept waiting around for neuro #1. This board has been extremely helpful to me! I keep trying to walk the line between being assertive, not looking like a psychiatric case, and getting appropriate care! My regular doctor that took care of me for years died of cancer a few years ago, so basically all my doctors are new to me. It's hard when no one really knows you.
So true. You know yourself better than any doctor ever could, so you need to educate each new one. Perhaps you could write a sort of personal health introduction for your doctors. I know we all fill out lot of forms when we first see a doctor, but I don't recall much if any space for the 'story' behind the symptoms.
I had 7 kids over the space of 14 years and I started experiencing more definite symptoms within three years of the birth of the last one other than numbness in my hands and feet and heat intolerance. I didn't bother going to the doctor until I began having trouble walking and muscle spasms.
It kind of sounds like MS. Have you had a brain and spine MRI and lumbar puncture? That should be enough to tell if you have MS. If you do, treat it early to minimize damage. Good luck!
I finally changed neurologists on the recommendation of this board.
I had one brain MRI last March that was clear. When I lost my vision and had a bad flare I asked about MS but he said I was too old for MS to start (I'm 44) and it would have turned up on the brain MRI, so tested me for everything else but never did order the full MRI's or puncture. I'm with a new neurologist now and I've seen him 2 times. He wants to wait to see if I have another flare. It seemed reasonable. But I'm going to ER next time I have a bad flare. If I would have gone last August instead of waiting around for neuro #1, I probably would have a better diagnosis now. Live and learn I guess.
p.s. I forgot, I did have a thoracic MRI last fall that was clear too. But the MRI tech was confused because neuro #1 just put on to look for bulged disks and it was a short MRI, they only took a few pictures. My brain MRI was to look for tumors because of my vertigo. Both were done on the older machine my medical group has. If I have a relapse, I plan to ask for all the MRI's to be done to look for MS and to be referred to the new machine, outside my clinic.
Thanks! I have faith that the new doctor will order one for me. I didn't know they could tell that much from a puncture, I thought sometimes it was inconclusive but I've had everything else now, I think we can finally do the last of the MS tests at least!
Mine showed MS, Alzheimers and the protein associated with Mad cow disease in people. Thankfully i didnt have the last one but i am glad to have the heads up on alzheimers.
My advice is to not wait for another flare-up. Your MRI's may not be sensitive enough to see very small lesions. If you have MS and are not being treated, you're currently getting brain damage. Don't let them put you off, it may be years before you get diagnosed if you do it on their time scale.
For some reason I thought it wasn't continuing to cause damage right now, since I seem to have stabilized for now. That is a bummer to think about, I worry about my eyes a lot (that's how the last flare started, loosing vision).
Thank you for the advice, I will continue to harass them. I feel so much better having the young new neurologist that listens to me.
Would you ask your primary or your neurologist? I've thought about making an appointment with my primary for a referral up to the MS specialty clinic in the city but wasn't sure he'd rather I just keep seeing my neurologist that I have.
I would think that the MS clinic would be better than waiting for clinically noticeable damage. The current thinking is to treat early with a high efficacy drug, even after one clinical event, to slow the damage.
My choices for drugs would be rituximab (off-label) or its new version, ocrelizumab, which is soon to be approved, or cladribine (off-label). I took rituximab as part of a trial at the NIH MS clinic. It was cool to visit the MS clinic. They were more informed than any of the general neurologists I've had. If you can go to a specialty clinic they should be able to give you a good diagnosis.
I'm on injectable cladribine now. Oral cladribine may be approved soon for MS too. Both rituximab and cladribine are high efficacy, with minimal side effects.
If you're trying to convince your neurologist to treat you more aggressively, you'll need more info. Here's a good place to start, they've helped me and I have learned a lot there:
Thank you so much!! When you put it like that, it is not a good idea to wait. I'm not very good about the asking to be treated aggressively part. It's very odd to have so many symptoms only I can feel (I do have several they can see too but most is me telling them my problem). I've had a hard time telling family even about it. Let alone a stranger. I don't like being vulnerable or to be thought of as a psychiatric patient. I feel like I've only had the one thing, my brain (my sanity) and to have that in question. Well, I'm not a fan.
Thank you for the links! I will go over them so I am prepared when I ask for the referral.
Thank you all so much! I appreciate you letting me hang around and are so very welcoming. In some ways I feel better to know the new neuro at least has narrowed it down to my central nervous system. I guess I'll just see what that means for me. One of the reasons he wants to wait is he wants to make sure it doesn't have anything to do with my PTSD. I'm in therapy and started medication for that, just in case. I started over a year ago when my vertigo wouldn't go away no matter what I did and I was worried it was somehow psychological based (it wasn't, it comes and goes, it's better right now. When I started feeling better again over a month ago, it started going away again).
Wow, so many responses. Definitely keep coming back here.. I would suggest to find an MS Clinic associated with a university. You'd get docs with the most up to date knowledge, experience and the most up to date equipment.. when I was first DX last summer, got a referral to MS Clinic at UCSF. My new Neuro there said he wouldn't of diagnosed me from that first mri. I've had high tech mri's on Oct. And will have again in April to check for changes. I do have a confirmed lesion on my spine.. Best to you! Lynn
Thank you Lynn! There are two in the city in my state. OHSU, which is a university and Providence MS clinic.
You all always have such great advice. Do you think I should ask my neurologist or my primary care for the referral? I had thought to wait until I had a flare but hearing that the longer I go without a diagnosis the more possible damage it could do (if it is MS) has made me reconsider.
I sure would, there is a world of difference between a general Neuro and a Neuro that specializes in MS and neurological disorders. You will then have access to the best care possible.. we go about 100 miles to my doc but any distance is worth it for the best care..
Like CalfeeChick , I travel over 2 hours to see my neuro at an MS Center. I feel fortunate to be able to do so. I assume you need a referral (from your GP or present neuro) in order to have your insurance cover the MS Clinic? Sounds like you have a good rapport with your neuro and might even need to bring up the MS question with him.
Thank you tutu. I appreciate your experience! I do have a good rapport with my new neuro. I will ask him for a referral to the ms clinic 2 hours away. I've learned so much from this board! I didn't realize so many don't see general neurologists.
Still holding out hope it's not MS. I really don't know what other central nervous system disease it could be but maybe the MS clinic has ideas if there testing is negative.
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