CAN YOU REMEMBER WHEN YOU WERE DIAGNOSED - My MSAA Community

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CAN YOU REMEMBER WHEN YOU WERE DIAGNOSED

ssdw1958
ssdw1958

I can remember when I was diagnosed with MS. I remember when it was 2004.

I remember because yesterday the Boston Red Sox are playing for the Penet.

That was the year the Red Sox won the penet.

But also my father in law passed away after a surgery

And my sister in law passed away from Cancer she was only 36 years old.

Let me tell you that was a very very BAD year.

It had been 14 years since I was diagnosed but we all know that we all had MS for at least 5 to 10 years before that.

Maybe that’s why I’ve been in a sad 😢 mood the passed couple of weeks.

Don’t worry I’m not going to do anything stupid, who would be around to give my husband a hard time haha.

Sandra

40 Replies
oldestnewest

It was 7/2013. I went to a neurologist at the suggestion of RA doctor because I would walk sideways the longer I walked something my sister noticed.

😀

ssdw1958
ssdw1958 in reply to Royjr

I am so sorry 😐 you have MS but I am glad you are here we do, a lot of discussions of our medical issues but we do talk about what is going on in our lives the good things and bad. You have read my MS comings but I also have a great husband who has been with me since 1984 and we have been together since1978 we are old folks oh my i used that word OLD 😆 LOL I have 2 sons and a granddaughter and a daughter in law, oh you know when you write it out I am old haha.

Just remember we are not doctors here but we can let you know what we have done with our challenges

I hope you have a good weekend.

ssdw1958

That was a rough year for you. 😢

I remember where I was sitting when I got the phone call but I can’t recall the exact year or day of the month. It was around 2009. I could look for my hospital records to confirm but...

My symptoms started around 20 yrs prior. I actually saw a neurologist who never even considered MS. But then again there were no DMTs available so I’m not sure it would have made much difference.

I had a premonition for years that I had MS. It wasn’t based on any symptoms or facts. I had even mentioned it to family members.

I got my diagnosis in October of 1999. I did NOT do the spinal tap for my secondary test, but rather did evoked potentials. I did have delayed responses in my visual field.

(The reason I choose not to ddo the spinal tap was because prior to my MS dx... I had a back injury from work and had done injections in my lumbar spine... Those were complete hell!!! )

When I went in and got the original dx, all the lesions were in my brain ONLY... I did not have any lesions in my spine until a couple of years ago. Next October, I will have had this damn illness for 20 years. I still have relapsing-remitting MS. I feel very grateful that I have an awesome Neurology clinic that specializes in ms here in Minnesota...

Sep 2009

Oh, I'm coming up on my "MSiversary" on 10/23. Yeah, I haven't forgot. All the negative stuff happened afterwards with the family members scurrying off in fear. I'm a better person with them gone. Haven't spoken to them in 5 years now.

May 2018; after trying to find the pinched nerve I thought was causing my issues. Was excited to finally get a DX at least until I was told there was no pill or surgery that would make it go away. I had never in my 53 years on earth, seen a Doctor and not been fixed. It was very disconcerting.

May 10, 2014. My neuro had kept saying “MS” since ii first saw him but i just dismissed it. Didnt look up what it was or anything. So when i went to his office with my God daughter and he said “you definitely have MS” my head started to spin and i thot my life was over. My God daughter thought they cud go in and do surgery to remove the lesions. Hahaha. We went to some place to eat and i got a Pina Colada.

And like others - it started a rift in my family. Some thought i was making it up. How do u fake an MRI and spinal tap?

I had a family member tell me I should file for disability after getting my diagnosis! Had to set them straight that I can work as long as I can do my job!

Jessie

Totally a personal decision. I had to file for disability - so didnt want to but i cudnt do my job any longer. Half my family said i was being “lazy”.

I ended up filing for disability just shy of 2 years of my diagnosis after a bad relapse from the flu that left me dizzy all the time and unable to drive or do my job :( None of my doctors told me I should get the flu shot because of my MS.

Bad doctors! Bad bad! I went around my doc - she wudnt give me a pneumonia shot cuz i was too young - but i found a pharmacist that gave me of those too. Cuz of r compromised immune system we can get those as well.

Sandy,

July 2006 for me. While I have had similar unfortunate events like you, not all of them happen in one particular year. And like you, I believe that I have 'ms' for much longer. I remember going to see a doctor for things 'not so okay' as far back as 1996.

My family and my husband help me get through this 'ms'. I am blessed.

Good post.

Stay Strong and Keep Smiling, or like they say here 'Boston Strong'!

Carole :-D

ssdw1958
ssdw1958 in reply to carolek572

They do say Boston strong but for everyone else we can say MS STRONG because if you, me and everyone else that has MS WE ARE STRONG look what we go thru every day. Here I am now using a ROLLATOR and a wheelchair IF you asked me what a ROLLATOR was 14 years ago I would have say with a strange look 👀 on my face and say let me Googel that haha.

Stay strong carolek572!

carolek572
carolek572 in reply to ssdw1958

Yep, and I understand you so well. I am using one crutch every where that I go. When I go grocery shopping, I use that cart like my life depends on it! So, a rollator is in my not so distant future. And FINALLY, after years of complaining about living in a two story house, and yes, bedroom on the second floor, my husband mentioned that we should move to a single level home! So, here I go!

Stay Strong as well, Sandy,

Carole :-D

ssdw1958
ssdw1958 in reply to carolek572

Well if and when you need a ROLLATOR the one I have has a seat and a basket, I believe the wheels are 6 or 8 inches big and the wheels are at least 1 1/2 wide. Mine has breaks and they lock. Look into it and try it out in a medical supply store. My where covered by my insurance you will need a prescription from your doctor. Oh and with my wheelchair you also needs prescription the funny thing about that they gave me the wheelchair and said if I used it for more than 10 months it was mine maybe they thought I would be cured I wanted to LOL but at the end of 10 months I knew it was going to be mine. Don’t do as I did and wait and get your equipment before it’s too late you don’t want to fall.

You were saying that you have a second floor in your home I said to my husband when I decided stairs should be out lawed I am so glad we didn’t buy that house that had two floors because it’s stairs had a curve to them that chair lift would never have worked. We don’t need any thing like that. But if you are thinking about buying another home think about the bathroom being Handicap accessible the toilet and shower. That’s one of our issues right now. Sorry to say all this but it is something to think about

One other thing have you ever used the motorized carts in the stores that is the only way to get around.

Keep on trucking 🚛🚚😊👍

carolek572
carolek572 in reply to ssdw1958

Sandy,

Thank you for all this wonderful information!

The handicap accessible bathroom will be a must! I am putting together a list of the 'must have' in my next home ~ hc accessible bathrooms, wide doorways, no carpets, stuff like that. BTW ~ my stairs have a curve in them, so chair lift wouldn't fit here! LOL but not for me!

Stay Strong,

Carole :-D

ssdw1958
ssdw1958 in reply to carolek572

Good thinking I forgot about the wider doors which is good I got for nothing from the Nights of Columbus, when and if you get one ok you will get one. Make sure that it’s on the right angle because one part of mine is not easy to go up but I do have railings to hold onto. You know I think if you call the MS Society they may have a punch list on buying a house a things to have list.

Good luck.

carolek572
carolek572 in reply to ssdw1958

I will look into getting that list. TY for mentioning that :-D

ssdw1958
ssdw1958 in reply to carolek572

👌😊

ssdw1958
ssdw1958 in reply to carolek572

Oh I for got to mention about tub chairs make sure it has a back and check the legs on mine my husband and son take it out of the shower and one of the caps came off of one of the legs and I sat on it and when I lifted up my second led I fell out of the tub I am alright now the paramedics and fire department can oh yes I forgot to let you know I have a lock box that’s how they got into my house. Well unbelievable thing. Just check the legs to your tub chair. I hope I’m not coming off bossy I am not trying too I just want people to learn from my mistakes.

ssdw1958
ssdw1958 in reply to carolek572

You know carolek572 when I write these things I really need to read them the Knights of Colubus gave me an out door ramp to get into my house door. Oh my goodness I can’t blame that on MS that’s on me. LOL

rjoneslaw
rjoneslaw in reply to ssdw1958

Do you have the U-step?

ssdw1958
ssdw1958 in reply to rjoneslaw

Ok I have to ask what is a U-step?

rjoneslaw
rjoneslaw in reply to ssdw1958

You have have an RX for it. It was specifically designed for people with multiple sclerosis and Parkinson disease. It has breaks and a seat I posted a pic a while back of it.

August 1999. I was relieved to get an MS diagnosis believe it or not. I was scared it was something terminal and as a single Mom was worried about who would raise my little girl. (My imagination was working overtime!) So finding out it was MS and treatable was a relief! It took me 9 months and a series of doctors to finally get the correct diagnosis. Some of the doctors were real jerks too. One said to me “Of course you are tired all the time...you are a middle-aged single Mom working full time at a demanding job. You are just experiencing a lot of stress.” I’ll never forget that.

ssdw1958
ssdw1958 in reply to Raingrrl

I think I can one up you on the STUPID DOCTORS my doctor said that I was having women’s problems but then again I was so stupid to listen to him. I have a big believer in you have to be your own advocate about your own health I said that to a woman when I was at the ER A Couple of weeks a go because her mother in law had something wrong with her foot when I said that to her I could see a light 💡 go on when she said to me you are so right. I know we can’t say anything to anyone because of the hipa laws but we can say a little something so that it will make them think about what is going on in there lives.

Totally. We r a generation that was raised to trust the white coats like they never make mistakes. Ha! I learned in 2010 how to stand up to a white coat doing my hysterectomy! In hindsight i shuda thought twice about that cuz she took both my ovaries! 🤣🤣🤣

Good for you I am proud of you I think back at things then and know how I do things about my health and the health of others in my family

It was the summer of 2006 when I was in the process of looking for a house to purchase. 2 years before that I had got the job I had gone to school for. Woke up one morning and my vision was blurred and I thought my glasses prescription had changed. After my doctor sent me to an ophthalmologist who tried to say it was my antidepressant that I had been on for years that could be the culprit, I put up a little fight with him and he sent me for a brain MRI. The MRI showed signs of MS so I was referred to a neurologist of my choosing. After all the tests and an MRI of my spine, I was dx with MS. Still can't believe it has been 12 years already!

Jessie

ssdw1958
ssdw1958 in reply to bxrmom

WOW 😮 I am proud of you I went to a eye specialist they told blood test and couldn’t find anything wrong this was in 2001 now I basically had to diagnosed no I should say I Googeled and diagnosed my self in 2004 my new PC sent me to a new eye doctor and I wrote nothing down about being diagnosed with MS after he looked into my eyes 👀 he said to me you have MS and I said to him I didn’t write it down I just wanted to see if you would know if I had it with out letting you know. He looked at me curiously and I told him about the eye and PC doctors I went to and they didn’t diagnose me with MS he just couldn’t believe that. I also said to him where were you when I needed him. He just shock his head ( no )

When you find a good doctor keep them and if you think you don’t have a good doctor go for a second opinion.

bxrmom
bxrmom in reply to ssdw1958

I TOTALLY agree with you on that ssdw1958 "When you find a good doctor keep them and if you think you don’t have a good doctor go for a second opinion."

Jessie

ssdw1958
ssdw1958 in reply to bxrmom

These doctors think know everything news flash they don’t and it would have been nice if the jerk I had would have referred me to another doctor. Oh that would have been a wrong thing to do. Ok I’ll stop it just makes a person want to scream ok I won’t my husband is sleeping 💤 right now oh yea it is almost 5am I should try to get at least another hour of sleep bye for now.

Well, well & WOW! I still a newbie!😍 I was just Dx'd in May after 20 or so yrs. With on& off sicknesses! 11 yrs. Of mis & under-dx crazy-quack Fake white-coats saying it was all in my head!!! Bingo! Guess What jerks, it really was all in my head & immune system!! I received a x-ray & both me & my hub/cg saw lesions. On my c-spinal. & had to travel 11 yrs. Later; after a resident fell on me & my pelvis went out, almost 90 miles Away to a pc, then she referred me to a MS nurse, then thank YAH! I had a MS specialist Neuro. Move to my town, i really like her, she's great... So, there's my story, & yep Sandra, I too had to diagnose myself practically!!! 😕 with my nursing knowledge.. 💐👍😄Love Ya!---🌹💜Jazzy

Boy I wish I was wrong you know the straw that broke the camels back was after I was the last time I saw this doctor who didn’t diagnosed me I was having pains in my ribs I also had fallen so I got extras done I went back to him to find out if I broke anything but I didn’t and on the way out he said to me ( I can still see him calling to me ) and saying if you need anything let me know. I wanted to let him know &@%#

But I couldn’t you see I had my 4 year old with me. Come to find out I was having the hug pain sooooo bad after that in one day I got a neurologist and a new PC it was so nice to have doctors that listened to me. That’s why we all have to listen to our selves if we don’t like what a doctor is saying asl questions. My current PC has changed I think because she has another MS patient and she had asked me how I was feeling and I told her I don’t know how to say it. I was and always have pains in the mussel above my knees and I think she really got it that MS patients do have pains that are unbelievable to people that have know clue what they are feeling like.

Well I need to try and get some sleep 💤 it is now 5:19a.m. Bye for now.

Sandra I remember when I was diagnosed & I did not have all the things you did. I am so very sorry you had such a terrible year. be back soon Mary

It was 2016 but symptoms started 2002. I want to stay positive but i have learned about the health symptom and my body. God provide us,we need to trust and listen to experience, expert's and our instinct.

It was about ten years ago when a chiropractor suggested that might have MS.I slapped him and told him never to speak of such a thing again. I was going to him for a neck injury that had caused problems for me over the years.

Not too long after that,my symptoms got worse and I was officially diagnosed with MS by a neurologist after having MRIs and a spinal tap.

As much as I didn't want that diagnosis,I was very relieved to find out why I was feeling the way I was. Having an answer enabled me to to do something about it...and no,I didn't slap Dr. B. News. ;)

It has taken time to get back on but I appreciate your honesty and thoughts so very much.It made me realize some things ive been carrying and that we have a right, to feel the way we do....and sometimes we dont realize why..thank you for sharing and being here....

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