Possible MS diagnosis to come? - My MSAA Community

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Possible MS diagnosis to come?

Siash
Siash

This may be a bit long but I’m terrified and just would like some words of wisdom if someone would take the time to read?

I was diagnosed with some pretty serious nerve damage when I was 17 (now 24) it’s thought that my immune system attacked my spinal cord and no one knows why. Anyway this causes a ridiculous amount of horrible symptoms that I won’t go through with you.

When first diagnosed it came to my attention when the whole left side of my body went numb. I was sent in for MRI and blood tests and upon getting the results was told that should this reoccur it would be diagnosed officially as MS and that there was a 50-80% chance of reoccurrence. Gradually through the day numbness/burning has worked its way from my toes up and is now covering the left side of my body completely. I’ve been in and out of hospital the last three years with symptoms the doctor cannot or will not explain or diagnose.

Could I hear about things similar you have or do experience? Maybe some other symptoms just so I can compare before I go to the docs Monday to see if I am experiencing the same?

I know it’s a very unique condition and appreciate that it’s different for everyone and has different levels of severity

21 Replies
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I could tell you about similar symptoms but there are numerous illnesses that show the same symptoms. MS isn’t easy to diagnose, sometimes it can take years and numerous medical test before you finally are diagnosed. My suggestion is to stay on top of all symptoms you might show or feel and talk and tell the neurologist everything. I think communication is very important. Good luck and I hope I helped a little.

Start keeping a journal to track all of your symptoms and how you're feeling both physically as well as mentally and emotionally. Then discuss it with your doctor. Also do research on the national MS, MSAA, webMD, CDC, and National Institute of Health websites to search your symptoms and what has already been found and ruled out. Write down what you find in the journal and ask the doctor about your findings and concerns. Make sure to bring a list of questions and don't let the doctors skirt around the question or try to blow it off. While I was still getting wishy washy answers about what was wrong with me one doctor tried patronizing me and tried to treat me like a 5 year old that didn't understand anything. I really hate it when people try talking to me like that and I especially feel insulted when doctors try doing that. I went off on him and reported his behavior towards me to the hospital commander. I was assigned a different primary care doctor.

I hope you get better and that what you're experiencing is fixable.

greaterexp
greaterexpCommunityAmbassador

I’m not sure exactly where you are in the diagnosis process, but we understand how it feels to be waiting for a clear diagnosis. I’m sorry you’re having these symptoms and hope get answers quickly. It’s not a diagnosis we want to hear, but when you can put a name to all these strange symptoms, you can begin treatment.

Please let us know how you’re doing. This is a great place to find answers and vent.

Hi I am ssdw1958 I was diagnosed with MS in 2004 but I know I had it at least 5 years before or longer. But

Welcome to our crazy group of MSers😜. Not sure what you have had done 🤷🏼‍♂️ I know they do MRI’s without and with contrast of your brain, neck, and spine for signs of MS lesions 🤷🏼‍♂️ Along with a spinal tap to help confirm. I hope you are lined up with a neurologist that specializes in MS🤷🏼‍♂️. Mine started in my right eye 👁 and was diagnosed within a week after all tests above were performed 👍. If you don’t have a journal 📓 go to “my ms manager “ and it is a great place to document your symptoms to share with doctor 👍 Good luck and hope it works out for you 👍🙏🐾😉 Ken

Hi my name is saw1958 I was diagnosed in 2004 but I know I had it at least 5 years prior to that. I can't say I have the same issues as you do. But don't we all have our own issues. I do agree with Royjr you need to make a list of everything that is going on with you and make sure you write everything down.. Because I don't know if you are like me but I for get things. I also have had my husband come with me well he has been driving me around and I figured if he is going to be with me he should now what I want to talk to my doctor with so he speaks up if I forgotten anything.. Good luck and have a good weekend

I totally know what ya mean, about terrifying, & I'm w/ya! I was undiagnosed for almost 11yrs. & dismissed by quack doc's clinics. & denied SSI! Havingto go back to wrk. Sick w/R.R.M.S.. Until I got fially sent to a N.P. neuro. In 2017! Now, I'm Progressed. 😭💔If only would have caught it earlier. That's what you need is a true neurologist that specializes in M.S. my burnings are inmy left side too...along w/my weiro cramps, & numbness, & pins+needles...you name it! Find a good neuro in M.S. & we in this precious, caring family are here for you.😻💜💙💛❤

Hi Siash please don’t be terrified. I know it looks scary, but stress is the worst thing for making ms worse, and for that matter, any illness is made worse with stress. We are all here for you, we have been there, so if we can help in any way, go ahead and vent, laugh, ask questions. There are a great bunch of peoples on here, no doctors, so remember, ask your doctor and as the others have said, make a list of your symptoms and questions. Let us know how you get on, blessings Jimeka 🦋 🍫

Siash , there's no point in troubling trouble until trouble troubles you. You don't want to rush into an MS diagnosis. And this very well may not be MS. There need to be other symptoms and signs at other times affecting other parts of the body. It isn't just "sclerosis" in one place (your left side, for instance). It's multiple sclerosis--has to show up in more than one place and at more than one time. Someone with MS might be numb in one side for a few months or even just a few days, and years later might develop some eye symptoms or bladder symptoms or gait problems or tremor or... There's quite a long list of possible symptoms and signs of MS.

Seems to me that the important thing is to find out what is causing the entire left side of your body to be numb. There may be something going on that is fixable--maybe by physical therapy, maybe by surgery. Why not put the MS idea on a back burner for now and focus on getting rid of that left-side numbness?

--Unless, of course, you've noticed some strange vision problems or speech problems or bladder or bowel problems, and in that case you should mention them to the doctor. You mention symptoms that the doctor cannot or will not diagnose. Maybe those are the kinds of symptoms you should mention again and try to get some answers this time.

You could always change doctors, too, if you feel that your doctor isn't addressing your concerns adequately.

Sending hugs. Hope you get some resolution with the Monday visit. 🌈

Jesmcd2
Jesmcd2CommunityAmbassador

Hi Siash seriously you don' want this dx. And You DONT want to go googling.

1. Make a list of your questions. 5 most important at the top!

2. If they are saying MS, Get to a MS clinic or specialist.

And 3 know your never alone🤗

Jes🌠

We’re all pretty shocked and scared in the beginning (and with every relapse.) It took 7 years before a doc really listened to me and ordered the right tests. Best of luck Monday!

Hi Slash, I read through the comments here and I think they're all pretty apropos to Having MS. In my particular case, and you keep in mind that every MS patient is different with different symptoms, my diagnosis was pretty rapid after my first Real symptom that I knew was part of MS. I was diagnosed only withMRI of my spine MRI and of my brain. No blood test no LP. Based mostly on the fact that I had the same symptom my daughter had and she was diagnosed with MS three years before I was.

I had very little clue that I had a MS at all. When I look back to before I was diagnosed I think I had what are called MS hugs that started a few years for my diagnosis but even my doctor, PCP, said it was a muscle contraction thing, but now I know and I learned on the Internet(not from my neurologist) what it was. I have been living with this diagnosis since 2005. I went on medication and in my case Copaxone about three months later. I wanted to see an MS specialist to make sure that he agreed with the diagnosis which he and because of scheduling problems with him, I had to wait till three months later otherwise I started on medication right away.

I guess from my point of view in the scheme of things, MS is A diagnosis probably better than other diagnoses I could have had. Then again, if I had a more progressive form of MS I might not feel the same. And there's always the worry I have even at my advanced age of 70 now, things could but hopefully won't get worse.

Best of good wishes,Slash. As it has been written in these posts, MS has a lot of symptoms that also mimic other conditions, so it's good to have a good neurologist and to keep track of all those things that are bothering you and perhaps not rush into a diagnosis. Some people do get treated for MS anyway if there is a chance that they might have it but no other diagnoses have been found. I still believe that the number one way in most cases,although not all, to diagnosed MS is with MRI and a good history.

Hi there! My main symptoms have been numbness and nerve pain. I did have a relapse that caused my entire right side to go numb. It did go away. I know that it is scary right now but hopefully it goes away soon for you too. You might want to consider iv steroids to help kick this relapse.

It can be a long and frustrating road to a diagnosis for some. You should ask for a lumbar puncture-if that comes back abnormal it could be enough to get a diagnosis.

I also suggest getting in with an MS specialist instead of a regular neurologist. It can make a big difference.

Sorry you are terrified, I understand the feeling welll. I hope you start to feel better very soon.

Hi, Siash. I'm so sorry about your troubles. I was fortunate (?!) in that my diagnosis came pretty quickly after the first onset of symptoms. I had two MRIs...brain and lumber spine. Then a spinal tap confirmed the neurologist's suspicions. Have you had a spinal tap?

Hi everyone thank you so much for all your advise!

I’m just home from the docs and turns out what I experienced when I was 17 was transverse myelitis and it’s reoccurred. On my discharge letter from the neurologist way back then it states that because of the prior episode I am at increased risk of reoccurrence with MS. I have been referred urgently to a neurologist so should get an appointment within 2-4 weeks.

Everyone here gave you such good advice, I was going to give you more but I’m so happy you are going to see a neurologist! You should still keep a list of questions and concerns to ask the doctor. 😀

Greetings Siash! Some other common symptoms our lack of balance, optic neuritis which causes blurriness and dullness from that eye for eyes, urgency and frequency when it comes to going to the bathroom. In fact, I once read a story explaining how people with MS usually know where the bathrooms are from here to there and everywhere. Fatigue is also a common symptom that will make you feel extremely tired and out of energy to do anything during the day.

I was diagnosed with MS twenty years ago. I was shoeing the symptoms for at least 15 years prior that. For fifteen years I was dealing with deafness, pain, unexplained lost of vision etc. It really depends on you and your neurologist. I know people who waited for over twenty five years for diagnosis... Now, after being diagnosed with ms twenty years ago, I'm legally deaf, wheelchair bound, named few... Your spirit will count for most, if you adopt to your new situation or not. So far I think I'm a fighter. I don't give my MS a inch to breathe. I hope that you can do the same. Jack.

I think you are a fighter for sure Jack.

Jack you are a fighter! I was diagnosed on October 29, 2015 And was paralyzed on November 10, 2015. After 2 months and 2 days on January 12, 2016, I was able to walk and come home. (3 different hospitals and a nursing home rehabilitation center) What a ride.

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