After advice I received here I sought a second opinion which I had with a neuro yesterday. It went ok. She asked me three or four times was I worried about something so I guess straight away she was on board with the first neuro and his fnd dx. I sought this appointment because what people here had said about ruling things out being far easier when, for instance, there has been some imaging. And she said she would send me for head and neck mri (I’m assuming she meant mri, she said scan). I know because of all my previous experiences that I was cagey. Lots of things I didn’t mention. Not helpful of me but last time when I told the dr pretty much every little thing (just in case because what the heck do I know what may or may not be important) he was very dismissive. But from her repetitive questions she had her stance also. she said all my symptoms were very subtle which I would agree with. Invisible. She said gp thinks ms but I’m too old (I’m 48). She mentioned a positive Hoffman’s sign. Also that I don’t have a serious neurological condition, (which is good), and that what I obviously needed was a jolly good night’s sleep...
First I want to thank people here for their input previously. Secondly I’d like to ask, so many of you went undiagnosed or were so dismissed, for years, in some cases, how did you keep going? I guess if you’re here you persevered. I’m just wondering if this is worth it. It’s so exhausting. I keep telling myself to ignore what I’m experiencing. I wish it’d work!!
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artmom
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Thank you for replying. I do find it problematic when hearing other people’s experiences re. dx and especially coupled with age - when the dr says that, which does not seem true, but I then need to trust what else she has to say. Tricky.
kept going to prove that there was something going on i wasn't nuts like they tried to make me out to be ...if you can find one that is specialized in MS..you will get better results for they know more about it...good luck ...
Too old? I find it disturbing that a doctor would dismiss any condition because one is "too old." I wasn't diagnosed until my late 50's, and some others here were not diagnosed until 60's or even 70's.
I am not saying you have MS or any other disease, but I think I would try to get to an MS center, if that is an option. I was fortunate enough to go to one recently and see a doctor who started from scratch with the diagnosis; he didn't repeat tests, but reviewed my previous test results and my history, as well as a thorough clinical exam. He did this without any preconceived ideas or bias, not wanting to just assume that the other doctors I had seen were correct or wrong, either way. He confirmed my diagnosis and evaluated how active my disease it.
No doctor has all the answers, but surely someone will have better answers for you. I'm glad you went for the second opinion, but it may take a few more before you get a clear diagnosis. You can't get treatment, if there is one, for any condition until you know what you have.
I hope you keep in touch and let us know how you're doing. We understand your frustration.
I agree completely go to a neuro is specialist in MS if you can. They have the ability to deal with the invisible and visible systems you're having. Don't be afraid to tell everything that is going on with you. If a dr dismisses you ask why and demand an explanation
Thank you so much greaterexp, what you say is very supportive. My husband said, if they don’t really know why/what, why don’t they refer you to a colleague? He’s a scientist and he said if someone came to him and it wasn’t his specialty, he’d try and send them to someone more suitable not make it up or dismiss them! It’s the untruths that’s make trusting hard. I absolutely probably don’t have ms. But help me sort this out and help me with my symptoms!
Artmom. Age ? Nowt is set in concrete, apart from which, medicine is an inexact science ! Older persons can show up with MS - was only reading a paper on that very aspect a few days ago. Can be found in those over 60. For myself, I am 82 !
Just checked out the Hoffman's sign. Interesting, as a couple of the patients did not have much of a Hoffman's sign - though the MD said in each case, 'there, a Hoffman's sign'. Hmmmm. Though he did go on to state that a in a Dx os MS it was not necessary to have the Hoffman's sign, that it just helped with a Dx. Only one patient had a wozee of a reaction.
I would go along with the suggestion that you check in to a well regarded MS centre. Just 'seeing' a neurologue aint going to necessarily hack it. Can't treat unless and until one has the diagnosis to treat.
Thanks for your thoughts Ruadh. I’m 48. I think Hoffman’s can indicate something...and of course nothing. At least she might think I’m not making it all up or just ‘worried’ about something. My gp did try and refer me to what I think was a specialist unit but they denied the referral due to being ‘inappropriate’. I think it was because I’ve not been dx. That’s what I inferred. I’m not sure here in the UK that I can get a specialist at the start before being dx. The two previous neuros were specialist in dementia and epilepsy. I know I can rule the second out. Not so sure about the first right now😳
I’m in the UK and I was diagnosed when I was 49 I’m now 51 and I have RRMS and also have Tysabri every 4 weeks at Royal Preston xxxxx I’m also an early retired ward sister xxxxxx
Hi artmom ! I was diagnosed 20 years ago and have never been tested for Hoffman’s sign. The gold standard for diagnosing MS is the revised McDonald’s criteria:
Were either of your neuro’s MS specialists? It’s important that you see one since they keep up on the latest and have a better understanding of the diagnostic criteria. And you aren’t too old for a diagnosis! There have been more people being diagnosed at a later age than in previous times. Good luck!!
Sorry, I'm a little responding. Even with the support of all of us who have experienced this journey; you still have to decide "what is best for you." Have you gone to a Neuro who has an extensive practice treating MS patients? Misdiagnosed is not good, and no treatment at all is frustrating: irrogant dismissive doctors you don't need!!!! I saw seven and was diagnosed at 49 probably didn't pay attention to early fatigue prior. Praying for you my dear, stay encouraged!
Thanks for responding NeeC. I’m not sure I can request a specialist in ms but I can look into that depending on what happens with this neuro. I think working out what is best for me (and my family, importantly) is key. I thought seeing a dr would be it. That may change. I keep thinking I’ll just deal with symptoms they’re not that bad. But they kinda can be - I’ve not adjusted yet I think. I’m fighting not accepting. And I’ve spent several years chalking rubbish cognition and tiredness down to being a mother because that is the obvious thing. Balance to age? Fifty percent of people should be weaving the streets then!! I know this is not normal, I’d just like some help, not judgement!
The benefits of early/earlier diagnosis are many: a variety of DMTs are available to slow the progression. Without treatment, MS will progress slowly or rapidly, with or without classic exacerbations but it will progress.
Well that is the only reason I started this process really. I was thinking it wasn’t too much of an issue. But I have children so need to be responsible (in this at least🤪). Rule bad stuff out then deal. But not finding the first part so easy. Thank you.
I empathize with your struggle. Like others, for decades, I knew something was wrong, but every time I tried to explain, some doctor would be dismissive or disinterested. And I cannot help but think that IF someone had listened, or been curious, I might not be where I am now, aware of my slow slide into disability.
I just knew something was wrong. Too many signs along the way. My doctor just kept telling me I was overweight once I started to press issue. True I was, but foot drop. Not being able to wear heels any more. Walking sideways. Legs feeling extremely heavy. I couldn’t run. Not being able to dress myself without sitting down. Not being able to raise out of tub. The list goes on....And this went on for a long time until it couldn’t no more!
Hi! I was diagnosed in 1992.. my sister about 10 years ago a. Her husband probably within a year of my sister being diagnosed... we are all at different stages, and very different ppl.. lol. It took them 7 months to figure it out.....and unfortunately it's hard to find a good dr anymore never mind. A neurologist... lol.. one thing that I would recommend is if u have children An ur community offers the ms camp for kids.. to take advantage of it for your kids ... my son enjoyed it..
Just for the record, you are not too old at 48 to be diagnosed with MS. After seeking answers for years, I was finally diagnosed at 70. All it took was someone to order MRIs, lumbar puncture and blood work. All were positive for MS. I'm sure others will chime in who were diagnosed at your age or older as well.
Thanks goatgal. Were your symptoms ’subtle’ as I’ve been told. Is that why it took so long? I figure if I had debilitating and/or obvious symptoms like optic neuritis/double vision, then sure, something’s really wrong. But a sore right eye (because my left eye is weaker apparently) is so tenuous. For instance. My balance isn’t good but I don’t fall. I do feel like I’m making a fuss sometimes.
I spent 10 years being misdiagnosed,and I was going to a gp that actually has ms!So I was 58 before I was diagnosed.he was convinced I had back problems so he sent me to a back surgeun.he is the one that found my ms.so many of us had to go all the way around the mountain to get the answer.your answer will come!hang in there
Thank you! I’ve had back pain over last few years that comes and goes and moves position so for ages I’d think how ridiculous, and, well back pain is so common. I couldn’t pin it down, it made no sense. Of course mentioning back pain to a gp is like saying ‘dr I can’t stop breathing’!!
It’s low down in my back and on one side (mainly the right). But then moved to the left at times! That’s why I didn’t do anything for ages because it sounded too bonkers that it moved. Seemed to me it couldn’t be anything definite if it was so fickle😏
Its around ur chest and can be in ur back as well. The lesion in ur spinal cord makes the muscles spasm. The hug just describes being “hugged” by those muscles. Thats y ms is the “snow flake” disease. No 2 people have the same problems. It all depends on where ur lesions are.
I do mean to be funny! 😁 What I meant was, back pain is so common. I did mention my on off back pain to gp again recently and they said ‘well I get back pain a couple times a year from sitting’ etc. Yeah, silly of me. One of the most common complaints from adult humans possible. So I understand that is not indicative of something particular
That's so frustrating. I hear ALL the time, "yeah, I get tired, too". I've stopped saying it at all. People should not discount your sore back because sometimes they have one. They cannot feel YOUR pain!
Nope that is absolutely true. And when I hear other mothers say how tired they are, or my husband, I think ‘sure, why should there be anything especially greater about my tiredness, I’m getting worked up over what everyone’s experiencing’. But then having the neuro say ‘get more sleep’, I did think, no that’s not it. It is more than that.
Exactly! My fiancé all the time complains how tired he is and i wanna punch him in the throat! He is like the energizer bunny on crack when he gets going. He has no idea what “tired” really is! Not in r world anyways
For reals. For 5 years now i wanna strangle him. He asks “how r feeling today?” If i say “tired” he responds with “ya me too.... blah blah blah”. Whatever
I should have been more clear. We sound a like, especially when said, about punching him in the throat.. I am also diagnosed with malice and fatigue. I use to be the enegized bunny . My medical records, state all effects of MS. Blessings to you Midgey_Midge06. 😚😚🙏💞 Cynthia '
1st you are not to old to be diagnosed with MS. I was diagnosed at the ripe old age of 65. Yes it is not normal but is does happen. Was first mis diagnosed with having a mild stroke because of my age. Continued problems and a 2nd Lumbar puncture and 25 blood test to rule out other issues.
I went almost 10 years before I got a definite diagnosis of MS. How ever I was still been treated by a neurologist for ms even though he wasn't sure. I had a lot of problems in that time. But when I finally got the definet diagnosis I was put on Copaxone and after 3 years on it I felt normal I still had and have my problems with spasms and other things but not like before. My prayers are with you. Take things slow and don't try to do everything all at once
All he had to go on in the beginning was the lesions seen on the mri. There wasn't a change in my spinal fluid till my 3rd lumbar puncher. Most of my symptoms where masked because of all the psychiatric meds I was on.
My advice is to make sure you get an MRI. I was not diagnosed until age 42 and it was because I was having vision problems where I went 75+ percent blind in one eye. The ophthalmologist who sent me for the MRI and other blood tests to rule out other things said I really don’t think you have ms. he was on vacation so he never called me back but my PCP had also gotten the results of the MRI which indicated optic neuritis. She said there’s a high probability that you have MS so you need to first and foremost go for steroid infusions. Then came appointment with a neurologist who said there is no doubt you have MS and you have had it for a very long time. She sent me for cervical & lumbar mris & gave me info on DMTs to take home. Those came back loaded w lesions too. She couldn’t believe I was doing as well as I was (which in actuality had taken quite the nosedive).Looking back, I probably had juvenile ms and spent my life making accommodations while being told “there is nothing wrong and/or you are just too sensitive or the padded blow off”.
Please don’t wait for the worst to happen to you. I grieve what may be now had SOMEONE taken me seriously years ago.
Get a 3rd or 4th or how ever many opinions from docs to find out what cud be wrong. Listen to ur husband! Someone shud be able to tell u what is wrong!
I had minor symptoms in my early 40s and had an MRI done. My beloved GP said it could not be MS, so I took him at his words and the symptoms went away. Fast forward 12 years to my mid-fifties when much worse symptoms put me in the hospital. After multiple MRIs and an LP, the hospital neurologist called in an MRI specialist who diagnosed me with MS. Later that year, when I saw my GP for my annual checkup, I told him I had been diagnosed with MS. He repeated to me that I DO NOT have MS, and when I told him the name of the neurologist (a state-wide known MS Specialist), he mumbled, “I guess you really do have MS”. All this to say that not all doctors know what they are talking about and you are NOT too old to be diagnosed with MS. Hang in there and don’t give up!
I went through 4 neurologists before I arrived at Cleveland Clinic Lou Ruvo Center for Brain Health here Las Vegas Nevada. They specialise in MS among other brain disorders. I got diagnosed at age 49. Had recent MRI and nothing new happy to say. Keep with your intuition, it's your body. Blessings Cynthia
Artmom, I had symptoms for 10 years of not being able to walk a straight line, double vision, and a family doctor that told me to get more sleep and reduce stress. We moved and my new family Dr. sent me to a neurologist. Once they figured out I didn't have Syphilis, they did the MRI. I was pseudo diagnosed at that point of having RRMS, after the spinal tap, it was 100% confirmed. I didn't really know at that point what MS meant, but I jumped for joy after finally having the mystery solved.
I didn't have a choice but continue to fight my disorders even after diagnosis so I could keep my job. In the morning I would wake up, fall on the floor, crawl to the shower, dry off, and crawl back to the bed to get my clothes. Not once for over two months was I able to stand up and put my pants on without a faceplant. The lack of balance and double vision were monsters for me that I fought against every day. Once diagnosed and properly medically treated for physical and mental issues, I once again felt human, no longer the pile of flesh that couldn't walk, or the mind that had zero tolerance for things going wrong. I was a monster that never hurt anyone, but after medications, I returned to who I really am.
It was a wonderful day (for me, not the carpet) when our Boxer Puppy Bailey pooped on the floor. I didn't start screaming or cursing, I said "I'll get it", went to the bathroom for TP, picked up the poo and flushed it. I sat back down and saw my wife crying with joy that I didn't lose it. My wife is my strength,, she has been my purpose in life for 36 years, and yes, we were married a week out of High school.
We have all had a hard time, but you, like many of us has fought through the challenges MS brings. And I can assure you that your efforts to fight the MS challenges will ultimately impress you and make you proud of your efforts. Be proud of each and every effort you succeed at, that provides so much power to your mind, even if it was nearly impossible to get it done. My prayers and experience are with you.
@artmom I was much older when I went numb. I had just turned 68! My first Neuro was a dud, diagnosed MS after a very poor quality MRI. Wanted to start me on Tedfidera even though I was JCV positive. He was very causal about the whole thing. Told me not to be upset, that I’d had a long life! Needless to say we left with all my records. It never hurts to seek a second opinion. All of that was over 3 & 1/2 years ago. I have a great Neuro now.
Thank you all so much for your stories and thoughts and support. I’m not sure, though, whether to be reassured or think that whether I get an mri or not, it won’t necessarily get me any answers! Ho hum. I hope everyone’s having a good day.
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