Newbie…..having major issues. - My MSAA Community

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Newbie…..having major issues.

Mishella69 profile image
11 Replies

I have not been diagnosed but I have been having major issues. I have been having numbness and tingling a lot lately. Also I have been getting these episodes. My first was a week before thanksgiving then the 2nd one was on Thanksgiving. That is when my husband called 911 and I was sent to the hospital. They ruled out a brain tumor or a stroke. They sent me home and said that it was neurological. Then I had my 3rd 4 days ago and now my 4th today. I start getting the numbness & tingling all over. I feel very confused. My arms and hands feel tight and they lock up. My fingers twitch & move on their own. I feel tightness around my chest and throat. My head feels really strange. I feel very weak and tired. I feel a little shaky. I feel like I can’t walk or I walk very slow holding onto things. After I have an episode it takes a couple of days for me to feel normal. Any other time I have headaches, restless leg syndrome, numbness & tingling, shooting sharp pains everywhere in my body, a couple of times I woke up and I couldn’t use my index finger . It didn’t hurt or feel weird but when I tried to use it it just lied there. I couldn’t control it. My muscles twitch a lot here and there and hurt & feel sore. Vertigo and dizziness. My memory has gotten worse. I have a hard time finding the right words to say. When it is hot and humid outside I instantly get numbness and tingling in my face & nose and have a hard time breathing. I am itchy all over. I have a hard time walking anywhere. My hips & lower back start to hurt and I feel very weak. Sometimes I feel unbalanced. This is all I can think of right now. I know there is more. I do have diabetes 2.

I am on Medicaid so I need to see my primary doctor first and then get a referral for a neurologist which could take a long time. I am getting frustrated because this is affecting my work . I just want answers.

Has anyone gone through these episodes?? Thank you for your help!!

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Mishella69 profile image
Mishella69
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11 Replies
jorrell profile image
jorrell

I would definitely make an appointment with a Neurologist ASAP. Many of this symptoms are semi-common with MS, but there are other neurological issues that can bring the symptoms on. A neurologist with a specialty in MS is what I would suggest.

goatgal profile image
goatgal

Since you need to see a neurologist for diagnosis ASAP, see your primary care doctor first also ASAP. MS symptoms are varied; they differ in presentation and duration for each one of us because the damage occurs within the nervous system. All we can offer is our compassion, understanding and support as you go through the sometimes very long process of diagnosis. Please let us know the answers you find. We wish you well.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi Mishella69 Welcome! Im so sorry your going through all of this, and we all can relate on how scary it can be. Like the others have said, get to a Neuro ASAP. And let them figure this out for you! We are here for you🤗💕🌠

Sandydemop profile image
Sandydemop

if you want to talk more about it as you go through the process of ruling things out, do it here. we have all been through the pre-diagnosis period with symptoms that seem to come out of nowhere. wishing you well.

bxrmom profile image
bxrmom

So very sorry you are going through this. It is scary to be going through. Definately get a referral to Neurologist ASAP! Specialists can take awhile to get into, esp for new patients. I'm sorry the ER was unable to help you. Please keep us updated when you can.

Tazmanian profile image
Tazmanian

Good luck talk to an ms neurologist sooner rather than later

kdali profile image
kdali

I have not, but just wanted to say that I'm sorry you are going through this and that you shouldn't have to wait for a referral if you just went to the ER. You could call your primary and ask what neuro practice they refer to, that may narrow down your options.

Hi Mishella69 🙂I agree that you Definitely Need to see neurologist-it may or not be MS, but sounds like that to me... I wish you the best ❤🙏🙏🙏 please keep us informed.

Lisa

Fancy59 profile image
Fancy59CommunityAmbassador

Mishella69, it's Fançy59. Take a deep breath and as much as possible try to relax. Stress is the worst thing you can do to yourself right now. You have to get to your primary care doctor ASAP and Tell them to pull every string in the book to get you Into a neurologist yesterday instead of tomorrow. Anyone who has MS can tell you that everyone's symptoms are drastically different. It was 53 when my MS reared its ugly head and literally knocked me down as well too. Where are you located at? You could call the national MS society and find out some neurologist in your area that you might be able to talk to and work on getting an appointment set up before your referral comes to it. It's just a possibility but it's worth a try. Keep in touch and let me know how you're doing. Take care and try to relax. Fancy 59.

BlanketTime1 profile image
BlanketTime1

first, welcome. though it's taking time, i'm glad you're seeing a neurologist. some of what you describe (and i'm no doctor, just another patient, so don't take opinions as gospel and try to hold on to the fact you'll see a neuro relatively soon) reminds me of my dystonic episodes. at first they thought i had epilepsy b/c i could feel them coming.

when they used to hit, i'd feel tightening in my chest and pressure on the back of my neck. now i stop breathing and my neck is jerked back. sometimes the spasms go down to my hands and they curl. the worst also involve my feet. after i feel sort of giddy, not quite all there.

but again, the neuro is important b/c even if you have dystonia it doesn't account for all of your symptoms. while heat intolerance is common to ms, it's common to other illnesses as well.

i know the waiting is terrifying and it's hard not to spiral, but while you wait please get off dr. google and try to find things that relax you. i hope you get answers soon.🤗

Hest19 profile image
Hest19

Hi Mishella69. My best suggestion to you are to be as complete and honest as you possibly can. Take notes with you because if you’re anything like me you’ll forget half of what you wanted to say or ask. You might also ask him how many MS patients he has or has seen, (if it is MS you want to eventually at least end up with MS specialist). It would be great if you took your husband with you because sometimes those close to us can see things that we don’t in our actions/behaviors. I would present my case; and then let him say what he thinks. Chances are he’ll want to do tests to get more info before making a diagnoses. Go with the tests he suggests, and take notes on what he advises. There again, it’s helpful to have someone with you. If he does believe it’s MS he’s apt to suggest DMT’s. Get all the information you can, don’t jump into anything without doing your own research on the meds and talking to others. Knowledge is power; anything you can learn from this visit will help you! Doctor will not have a magic pill unfortunately but he will be able to help. Hugs and prayers to you. You’ll have options ❤️

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