Had my neurologist appt

[lovelygirl91]

All these symptoms and the doctor thinks it’s stress. She isn’t gonna order any exams unless my symptoms get worse then she said in two weeks if it doesn’t improve my hand tremors she will give me a medication to calm them down and then if that doesn’t work then she will order mri. What a waste of my life. She did a few physical tests on me and then said because my tremor improved when I did a hand game that it was stress. I feel so discouraged I don’t even want to go to the follow up appointment in two weeks.

I made a post a couple days ago about my symptoms but if you missed it here they are :

Started feeling run down on 11/3 then at 6pm had Numbness in entire right side of body including face left leg to knee, since 11/3 have experienced numbness in both arms including hands and fingers, hips, vagina, butt, both legs feet and toes

Sometimes pins and needles

Deep aches in both upper arms forearms right hand thighs right foot

Migraine auras and pain behind the eyes

Right side of chest squeezing and aches under ribs

Jaw aches and feeling uncomfortable after the aches

Varying levels of fatigue including days where it’s hard to walk and move/ hands feeling weak

Tingling/itching of face

Muscle spasms in thighs and arms face and anus

Hands shakier than usual

Body tremors/shaking

Hard to walk feel clumsy movements

Under right rib stitch

Slight incontinence

Felt an electric shock go through my body while I was walking felt like it jolted me lost vision for a moment

Thought it was stress but for a few weeks tried to eat but couldn’t swallow the food lost 20 pounds in a 30 day period sept to oct

Had a day where spasms were like every 3-4 minutes then got exposed to cold air after opening patio door and spasms became constant

[NorasMom]

OK; I do not want you to have MS, but I could have written that post. If it's at all possible, between your insurance and your income, find another neurologist! And keeping going until you find one who is willing to run tests.

I've heard it all. Mine was "just stress" for years. I was "too young", "too fat", "a smoker". The only one on my side was a wonderful GP who recognized all of it as being neurological but wasn't able to diagnose me.

I won't discourage you by telling you how many years I spent waiting for acknowledgement, but do not give up! Maybe it's not MS, but there are too many consistencies for it to be "stress".

[starlight5 in reply to NorasMom]

I too had a great PC who said she thought I had MS and then sent me to a neuro who brushed me off. I went back to her and over several months she ran every test she could to rule out other possibilities. When she was out of tests to run, I saw a different neuro who at first thought transverse myelitis, ordered a new mri and then diagnosed MS.

[BettysMom in reply to NorasMom]

I believe the doctor was using the word "stress" in place of telling the patient that her symptoms were "functional," which she would not have understood.

[BettysMom in reply to NorasMom]

Actually, her plethora of symptoms are extremely INCONSISTENT. The only realistic assessment is that she is having a conversion reaction, probably due to stress.

[CatsandCars]

Oh, wow, I really feel for you. There's nothing like being basically told "It's in your head." Ugh. I know you must be so discouraged, but don't give up. There are official criteria (called the McDonald criteria) for diagnosing MS; I don't think a peg test is one of them. I think those are normally used later on to see if your dexterity has suffered.

Where are you located? Do you live in the US? If so, you can find the contact number for MSAA at MSAA.org. Call them. They might be able to point you to other resources.

Kudos for coming back for support. One of the most important lessons to learn as a patient is, unfortunately, how to advocate for yourself when doctors or insurance companies let you down. Good luck!

[BettysMom in reply to CatsandCars]

I do not think that this doctor "let her down." ylstacy was disappointed that she could not get the diagnosis of MS, but that does not mean the doctor is incorrect in her assessment.

[CatsandCars in reply to BettysMom]

Bettysmom, I respect you, but I personally feel that an MRI was warranted based on my experience as a patient. It's also not very nice to dismiss symptoms as bad as these as "stress" and not offer any help, advice, or guidance. Instead, it was all dismissed as stress. What did you, as a physician, think of the doctor's assertion that the patient's performance on a "hand game" (peg test?) conclusively ruled out MS?

I did not have the impression that the original poster wanted a particular diagnosis, that she just wanted to know what was causing all of these debilitating symptoms and was expecting that a neurologist would be able to provide some form of assistance.

[BettysMom in reply to CatsandCars]

I seriously doubt that the doctor said that the hand game, as you call it, conclusively ruled out MS. She did take the results of that in conjunction with everything else she found. But that fact that the OP did not have tremors with "intention" is VERY telling. Tremors caused by neurological disease persist or increase with intentional movements. You know that an MRI can be normal but the patient can still have MS, often diagnosed in the future. So if the OP had an MRI that was normal, persons on this forum, at least, would still be encouraging her to keep searching for more doctors and testing. And MRIs can be abnormal but not be consistent with MS, which the majority of lay people have difficulty accepting.

[BettysMom in reply to CatsandCars]

You and I were not present at the OP's consultation with the physician. We only have her takeaway. It's quite possible that the doctor tried to explain things to her but all she got from it was that it was caused by stress. I imagine that that is the likely scenario. Very few non physicians can accept the concept of conversion disorders or functional syndromes.

[lovelygirl91 in reply to BettysMom]

None of you were present at the consultation. I do not care that I was not diagnosed with MS in fact I hope it is not MS. To however disregard all of my other symptoms including the fact that I have a neck injury that did not improve with physical therapy and not order any imaging whatsoever to rule anything else out including a pinched nerve is just lazy diagnosing to me. Had she explained that there is such thing called conversion disorder and that stress is a major factor that would have been a different story. She told me to take cold showers and to take walks and to call her if my symptoms got worse. What qualifies as worse in this scenario? Who knows. With that being said I appreciate everyone chiming in with opinions and support.

[BettysMom in reply to lovelygirl91]

Cold showers? Now that's stressful!! Who would be helped by that? I certainly hope you do not ever have more or worse symptoms than you have described to us. Of course we should all hope that you can relax and get better very quickly. I hope you will talk to your therapist about the symptoms and how they may be caused by a conversion reaction.

[Mayzee12]

Hello ylstacy, I agree find another nuero that specializes in ms. I'm sorry you are going through this. Hope you find answers soon. Praying for you.🩷

[starlight5]

Your primary care might be willing to get things started by ordering bloodwork and MRIs. I would keep the appt with neuro but in the meantime go back to your primary care and ask. Then ask for a referral to a different neuro. That is what I had to do.

[BettysMom in reply to starlight5]

There is really no point in her PC ordering blood tests and an MRI. None of those things will rule MS in or out; they will just add fuel to a fire that is raging in the OP.

[Blanketttime1]

i'm not a docctor!!! BUT i read lhermitte's, spasticity, ms hug, incontinence, fatigue and tremor, with possible dystonia. do you know how i recognised all of that? i have all of these, plus ataxia. *sigh i hate doctors. i was recently dx'd with mcas. i remember looking up this one thing that kept happening to me and seeing mcas every time. i looked it up and it fit this pattern of symptoms i was having. i watched a youtube vid where a woman said it took her 10 months to get a dx. i remember thinking, how did it take so long? i kept seeing "specialists" who didn't actually diagnose or treat it, but had it listed under their specialities. i saw one doctor who told me it wasn't real!! this was an allergist, mind. ridiculous. my primary care doctor is a star. she asked what tests i needed, i told her and she went to look up ways to code it for my insurance to cover it. i got 3 positive mcas results...and only then did i get a diagnosis! and guess what? it took 10 months, lmao.

don't give up; 2nd opinions exist for a reason, too. i mean, how is all of what you described stress? i can't.

[BettysMom in reply to Blanketttime1]

Yes, all of the OP's symptoms can be caused by stress. Please google Functional Neurological Syndrome. Her symptoms are not are not consistent with MS.

[Brindisi1]

I hate that give a pill for symptoms thing when you don't know underlying diagnosis. Agree a 2nd opinion better since she want interested. Will your pcp order MRI sounds like you have enough symptoms to justify. My internist ordered for me when I had optic neuritis (6 wks later I went and no active symptoms) ? Stay strong and prayers for your journey

[BettysMom in reply to Brindisi1]

Actually, the OP has way too many symptoms to warrant a a workup for MS. Your situation is different. Optic neuritis that resolves in a couple of months is almost certainly MS or CIS (Clinically Isolated Syndrome.)

[BettysMom]

I understand why the neurologist told you that. You have WAY too many symptoms which last varying short lengths of time, all during a very short time frame. This is not MS. Any of these symptoms could be MS, but not all at the same time. You almost undoubtedly have Functional Neurological Syndrome (FNS) which can be caused by stress.

[Greentime in reply to BettysMom]

Worth looking into ylstacy? mayoclinic.org/diseases-con...

[Dan_NY in reply to BettysMom]

In my experience this is exactly how some of the doctors think. .."I cant explain it so it must be in your head..." There are conditions that many doctors and non medical people alike have never heard of, some of which may be candidates for the OP. I lost count the number of doctors whom told me illness is in my head. New symptoms would show and I would be dismissed until finally both my elbows went on me. I had golf and tennis elbow in both arms at the same time. Unable to lift much more than a few lbs, pain at rest, weak arms, driving was extremely difficult, etc. Luckily elbow pain is not on the list of stress items and docs couldn't dismiss this.

I wont pretend to know what the OPs dx is but good advice is get a second opinion and dont look back. You really should know if you are stressed or not. If so dont look to the medical community for assistance. Good luck OP. I hope you find some relief.

[BettysMom in reply to Dan_NY]

You can't possibly know "how doctors think." I'm sure that the OP knows that she has stress. In fact, I'm sure she know that she has had some traumatic events that have her very upset, and she probably realizes that she is not handling her stress well.

[stepsforNeeC]

so sorry that happened. But unfortunately uninformed doctors do still get to wear a white coat!!!!! Don’t give up, try to schedule an appointment with a Neurologist who specializes in MS . Stay encouraged and don’t give up, even though it takes a lot and can be draining, most importantly there is a doctor who will listen to you with a compassionate ear! Just have to connect with him. Stay encouraged my friend ❤️🙏

[Robsmom]

I agree with everyone, ask your PC for an MRI and find an MS Specialist. I don't understand why they wouldn't just want to rule out MS.

[BettysMom in reply to Robsmom]

An MRI alone will not rule MS in or out. A second opinion may or may not help this OP. A limited number of therapy sessions with a psychologist would serve her better.

[felafelbowl]

I am in agreement with the others who already posted. You need to get a second opinion. I had a neurologist who actually did test which showed lesions but then refused to say I had Ms and I switched neurologist and he did some more tests and immediately diagnosed me. Keep on advocating for yourself

[stepsforNeeC in reply to felafelbowl]

Exactly ❤️

[kdali]

I wish she had checked vitamin levels considering the weight loss and several things in your list could be nutrition related. I don't think it's terrible because she has plans to move forward if she is wrong. I have been told it wasn't MS (with classic symptoms) and flat out denied the MRIs. Your MD is saying she will scan you if you don't improve soon. Be the best stress free person you can be while you wait and consider going to the follow up! It takes forever to get a second opinion, so you may as well go. GL and please let us know what you decide.

[BettysMom in reply to kdali]

Good advice. It is also possible that the OP has developed an eating disorder in an attempt to have something she can control in her life. She is apparently very conflicted about something or some things. Her life may be chaotic. The overabundance of her symptoms indicate this.

[CatsandCars in reply to BettysMom]

If I were having frightening neurological symptoms, and someone who had never met me started speculating that I may have trauma, an eating disorder, or a chaotic life, I personally would be devastated, then infuriated. If I wasn't aware of having stress before visiting this site, I sure would be now. I hope that ylstacy doesn't think that this is the way we always treat newcomers.

[BettysMom in reply to CatsandCars]

Fortunately for ylstacy, it appears that she is more open-minded about her problems than you are. It also appears that she is a more stoic individual than a lot of people on this forum.

[CatsandCars in reply to BettysMom]

So I am close-minded and what? Overly emotional? Do you think that's an acceptable way to address a fellow human? People come to the forum with a wide variety of experiences, and yes, they have feelings. You can educate and disagree with folks and still treat them with kindness and respect.

[starlight5 in reply to CatsandCars]

Well said CatsandCars thank you for saying what I wanted to

[CatsandCars in reply to starlight5]

😉

[mrsmike9]

They seem to always want to blame symptoms on things other than MS. I saw my neuro this morning and the additional things that I'm experiencing are stress from my surgery (things have been going on way before that) or things off in my blood. With all my blood draws someone should have noticed something before this! So they took a bunch more of it today...

[BettysMom in reply to mrsmike9]

What do you mean by your first sentence? Many people with MS complain that their doctors blame their complaints on MS when they (the patient) think something else is wrong with them.

[mrsmike9 in reply to BettysMom]

I didn't type, "first sentence." Not sure what you mean.

[BettysMom in reply to mrsmike9]

I was referring to the first sentence of you entry above which reads: "They seem to always want to blame symptoms on things other than MS." And then I was stating that the opposite is often what MS patients say about their doctors.

[mrsmike9 in reply to BettysMom]

Sorry. My brain fog has been acting up more than usual. My neuro today was blaming my latest symptoms on stress from my surgery, anemia, etc. I've always been a little anemic so that's not a new thing. But I do have things getting a bit worse, even though my MRI didn't show changes.

[BettysMom in reply to mrsmike9]

You have had so many health problems this year (chronic diarrhea, pneumonia, and a very invasive surgery, among other things, I'm sure). Perhaps all this is causing a pseudo-exacerbation. For me, just the aging process has me wondering if symptoms are worsening MS or just getting old.

[mrsmike9 in reply to BettysMom]

Aging is the pits for sure. I'm 65, going on 80. My mom died at 98. She was on vitamins and Warfarin. I'm on 13 things!

[stepsforNeeC]

? Semantics (you) - many of us are well informed, professionally/academically; lack of compassion or arrogance is never acceptable by any medical professional!

[BettysMom in reply to stepsforNeeC]

What about your arrogance when you berate a physician who is doing her job? What gives you the right to sit in judgement of this physician? You weren't there at the consultation. And what do semantics have to do with this?

[stepsforNeeC in reply to BettysMom]

🙏 for you.

[Scout4x4]

I agree with in finding a new neurologist but not all your symptoms match MS issues. Don't follow the recommendation to use DR Google which has brought you to this conclusion.

You need to realize that there are many of diagnosis that you may have not just MS your PC won't order an MRI for you with out a specialist being in volved. Based on your two post it is clear your suffering from anxiety which your PC can help you with. It's not that the first neurologist was blowing you off. If the neurologist done a correct physical there would be signs that stood out towards MS.

I know MS can be a scary diagnosis. It took me 7 years to accept it. every day is a new day, and you have to accept what comes along is your life that you have no control over.

[BettysMom in reply to Scout4x4]

Yes, you are correct. Thank you for understanding that the doctor did her job in concluding that the patient's symptoms, combined with her assessment of the OP's physical exam, ruled against MS .

[BettysMom]

I suggest that you consider having some sessions with a counselor to help you deal with your stress and anxiety. This can help you a lot more than chasing second opinions and medical testing.

[lovelygirl91 in reply to BettysMom]

I am not chasing anything, like I said I do not want it to be MS and if it is just stress then great that’s fixable but I wasn’t aware I was actively feeling stress so severe that it leaves me struggling to function normally and neither was the therapist that I’ve been seeing for the last few years. Surprise to the both of us but doctors know best so who am I to disagree.

[BettysMom in reply to lovelygirl91]

I was not meaning that you have been chasing anything up to now. You did a very reasonable thing by having a consultation with a neurologist. What I was doing was encouraging you NOT to take all the suggestions of other people on this forum who are telling you what to do, like getting a second opinion, having your PCP order this and that, changing doctors, etc. Have you talked with your therapist about all these very uncomfortable symptoms you have been having? Functional symptoms are usually a reaction to emotional trauma or to stress and anxiety that one is not able to resolve,