I’m I in the clear: Hi I started about... - My MSAA Community

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I’m I in the clear

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Hi I started about last October get tingling and numbness down my whole right side. My lips and tongue were also having bouts of numbness like I had been to the dentist. Then came the tremors they would last a few weeks at a time and become worse if I tried to say hold my phone up to read something. Seen go who sent me to neurologist urgently after suspecting motor neurone. Neurologist examined me said def not motor neurone thank goodness and that she would check bloods and arrange MRI. Bloods came back fine except slight anemia. Mri is now back of head and spine with contrast and is clear except for slight degenerative changes in spine. She has stated this rules out MS compile and will be discharging me as she can’t see any of my symptoms are being caused by a neurological disease. I’m now very confused as symptoms have worsened affecting my cognitive ability and I’m jumbling up my words and my short term memory is all but gone. I don’t know where to turn or what is happening to me. Any advise or ideas welcome. I’m in Northern Ireland UK. TIA

23 Replies
greaterexp profile image
greaterexp

If there is any way to seek the opinion of another neurologist, especially one who specializes in MS, I would want to do so.

It’s so hard to know something is wrong, but be told that nothing specific can be diagnosed. I’m sorry you’re dealing with that. My tests, including an MRI over 20 years ago showed no reason for my symptoms, yet now my MRIs show multiple lesions.

I hope you get some answers soon.

Ruadh profile image
Ruadh

Here is your search criteria -

'clinical examination points to MS but MRI with contrast is clear'

As you will see from the headers to the many links, it is quite possible to have MS but yet be clear on the MRI.

You will also see pointers to check out other directions for a different diagnosis.

Suggest going through, making notes. Get back to your GP and ask for a second opinion.

"Can you have a clear MRI and still have MS?

An MRI result that says things are normal does not absolutely rule out multiple sclerosis. About 5% of people with multiple sclerosis don't have lesions in the brain that show up on the test."

Hope the digging can clear up the conundrum and lead to a quick resolution -

Take care .

in reply to Ruadh

Where do I search this I can’t see anywhere in this community to search it and when I do a general search I’m getting nothing about ms 😩😩

Ruadh profile image
Ruadh in reply to

Internet search : Can you have a clear MRI and still have MS ?

That is the search criteria to use. I don't know if this is permitted but, if not, then just use the search criteria = google :-

Web Results

- rafts of information - have fun digging :)

MS can be present even with a normal MRI and spinal fluid test although it's uncommon to have a completely normal MRI. ... Also, the symptoms typically associated with MS can occur with other problems in the brain or even blood. Other diagnoses may need to be considered if your MRI is normal.Mar 5, 2007

Symptoms Say Yes, Scan Says No - Multiple Sclerosis Center ...

everydayhealth.com › multiple-sclerosis › specialists › symptom...

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Does a normal MRI confirm that I do not have multiple sclerosis?

webmd.com › multiple-sclerosis › does-a-normal-mri-confirm...

an mri result that says things are normal does not absolutely rule out multiple sclerosis. about 5% of people with multiple sclerosis don't have lesions in the brain .

in reply to Ruadh

Thank you so much you have given me plenty to read through and wrap my head around. Hopefully this information will enable me to decide how to move forward with finding answers and give me other avenues to pursuers well. Again thank you for the information 😊

Ruadh profile image
Ruadh in reply to

Very glad to have helped - and hope you can soon find a resolution to the problems. I certainly agree with the recommendation to find a second opinion - not all doctors are equal, and it can be devilish difficult finding a good one. Take heart - go well :)

Thanks guys I was so shocked to read she was stopping test after MRI. I was under the impression the would at least do nerve conduction test and or lumbar puncture. We have a huge backlog for neurology as there are 100s of patients here given the wrong test results by a neurologist who is no longer working so I waited 4 months not knowing whether I had motor neurone or not and then 1 appointment with neurologist to get the bloods and mri ordered and it looks like that’s all I’m getting. I should also of added my mental health which has always been an issue is suddenly out of control. I’m constantly over emotional and my feeling and senses are completely exasperated which has never happened to me before

twooldcrows profile image
twooldcrows

with out getting the true help from the doctor would send me over in emotions and i bet it is all of us would say also just having MS is an emotional roller coaster but stay strong and yes go back to primary doctor and discuss with them and make new plans on what to check for next ...good luck for i know you will find an reason for your systems ...i know i can freak myself out if i think about it to much so i just go with the flow of knowing that this disease can do lots of different stuff to us ....mind blowing don't let it do this to you it is your body and you want answers for what is going on ....love and much happiness ...laugh and smile ...scream if that helps just warn people around you that you are okay just releasing some stress ...don't need that and could be some of the problems....so sorry to get a doctor that doesn't help but makes it worse for stress....

rjoneslaw profile image
rjoneslaw

can u see another neuro for a 2nd opinion?

mm1527mm profile image
mm1527mm

I agree with the other members. I would seek second and even third opinion if no answers. Sorry to hear

I will have to see GP this week but it looks like I may have to go for a private neurologist. There are 2500 on callback from botched results from 1 neurologist who is now struck off I think so I think they are trying to get people off the waiting and consulting lists as soon as they can. Thank you all for your help 🤗🤗🤗

Frances_B profile image
Frances_B

Not knowing what's wrong is a tough place to be - and many people here have been there, some for a very long time before finally finding out what's going on. You say "Bloods came back fine except slight anemia." What was your blood test result for Vitamin B12? If B12 wasn't tested then it should have been, as B12 deficiency is one of the "common" MS mimics and deficiency can produce neurological symptoms. Was your folate also tested?

Also - you write "Where do I search this I can’t see anywhere in this community to search it and when I do a general search I’m getting nothing about ms". What Ruadh means is to put the phrase "clinical examination points to MS but MRI with contrast is clear" into Google or some other search engine - not to use it to search this forum. Pretty much any similar search phrase will bring up info on the diagnostic workup for MS, and you can also run a search on "MS mimics", however, I would VERY STRONGLY caution you about jumping to conclusions and self-diagnosing - especially if you already have some mental health issues, as you will just make those problems a whole heap worse. As several others have suggested, your best option is to seek another opinion from another neurologist.

in reply to Frances_B

Hi yes B12 was checked and is perfectly normal also folate normal. The bloods she ran were all the known mimics that basically could be found in blood tests. Everything clear apart from slightly low iron. Low iron is actually the norm for me so that was expected 😊😊

BettysMom profile image
BettysMom

I am a physician (M.D.) in the United States. I'm sorry that you are dealing with these frustrating symptoms and no answers. In my opinion your constellation of symptoms does not fit multiple sclerosis. In light of your negative MRI and your stated history of emotional/mental problems, I believe you have a "functional neurological symptom disorder" or "functional neurological disorder." You can search this disorder on the internet but here is an article to get you started.

en.wikipedia.org/wiki/Funct...

artmom profile image
artmom in reply to BettysMom

Please do not start dx people over a forum.

Also mental health histories are, I believe, no longer correct in dx functional neurological disorder. There are too many people being dx with fnd with no history of mental ill health to make it trustworthy. It is outdated opinion. Having said that, as a physician I am not surprised you are throwing that dx out carelessly. You should know better, but of course you are not alone in your behaviour - just read some of the stories on the HealthUnlocked fndhope forum.

Also anyone with unpleasant and unexplained symptoms will quite likely start to feel anxious or down, whether as a symptom or side effect, especially considering the easy dismissal of patients by drs in many cases (ESPECIALLY fnd).

Autismmumx2 - try and get a second opinion. You’d probably have to be patient anyway but especially so considering the current situation in your area. Good luck.

BettysMom profile image
BettysMom in reply to artmom

There was nothing careless about my response to the OP. It was well thought out and well intended. Your response to me, on the contrary, was uneducated, hateful, and intended to demean. You are incorrect; a person's mental health history is very important in the establishment of a functional diagnosis. The OP stated that she had mental health problems prior to this recent complication, not caused by it. She asked for help in understanding her present situation and for information she could access on-line. It is sad that so many on this forum clearly despise physicians yet expect physicians to help them.

in reply to BettysMom

If you could just clarify what you mean by constellation of symptoms not fitting MS as up until the MRI result I was told motor neurone then had that taken off the table by neurologist and replaced with MS like symptoms? I didn’t come up with all these symptoms and what they could be by myself. I only mentioned my mental health simply because it has exasperated in the last few weeks. The symptoms began last October. My mental health has been a problem for 23 years but has always been under control to the best extent it can be for the majority of those years. It just feels very much like “oh you have a mental health problem well there u go. That’s the cause of these other symptoms”. It doesn’t make sense that one clear MRI would put an end to investigations. That was why I initially asked the question to see if this occurred regularly with other people?

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to BettysMom

No one here is a Dr. (M.D.) Or Qualified to make a diagnosis here BettysMom

We ALL Clearly State That!

Jes 🌠

BettysMom profile image
BettysMom in reply to Jesmcd2

Now why would you say that? I am here and I am an M.D. I am qualified to give medical opinions. My response to the OP was a medical opinion--a possibility to be considered--not a diagnosis.

I hope that you do not have MS, although you obviously have something going on that they have not found the answer to yet. My first attack was in 1992. They ruled out everything that could be the cause of my symptoms then did an MRI looking for lesions and found none. I was told that it could still be MS but if so I'd most likely have a relapse within 2 or 3 years. Fifteen years later when I had my first relapse, they did another MRI and the lesions were their and that is when I received my diagnosis.

stepsforNeeC profile image
stepsforNeeC

Hello, This is the most frustrating process anyone can go through; I say this from the heart as I saw seven neurologists! That does'nt have to be your journey path; but plaease get more than one opinion even third if necessary; take ALL your CD's with you be patient as hard as it sounds. I had a Neuro at one of the most prestigious hospitals in the US delay putting me on any MS med's, with me begging reports in hand, his suggestion was for me "to wait" - seriouslly! I moved on and been with my doctor for 12 years. We are a caring group and are here for you. Keep me updated, praying for you.

Blessings -

NeeC

CraigS profile image
CraigS

With 15 years of misdiagnosis under my belt, all I can offer is to continue looking for the answer. Hopefully you can try different Neuro. docs to help you. The diagnosis (or lack there of) was the most frustrating part for me because it seemed as though they didn’t believe me.

Now that I know, I don’t feel any better. Great, huh?

Jozzi profile image
Jozzi

Oh I am sorry to hear of all of this! Being misdiagnosed at first, (given the all clear after an MRI) It turned out that I was diagnosed with MS. PLEASE get a second opinion or at least ask for someone else to review your MRI. Unfortunately, doctors are only practicing medicine and pending how long they’ve been doing it and how good they are...they can be wrong too! All God’s best to you and I hope you feel better real soon!

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