Update on So sick and tired.: I saw my MS... - My MSAA Community

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Update on So sick and tired.

dar58 profile image
dar58
β€’17 Replies

I saw my MS Dr on Monday. I absolutely love my Dr. He is so kind and caring, honest and thorough. I just don't like the drive, 47 miles each way. I picked up all my MRI's I have had since the summer. He looked at all of them. He was totally shocked with how fast the progression is. Up until recently, most of my lesions have been in my spinal column and some scattered in my brain. Now they are very active in both hemispheres, temporal and parietal as well as minimally in the pons. For the past few months we have tried everything as far as meds including injections and 3 times solumedrol IV for 5 days each time, nothing has even slowed it down. Now its pretty much treating symptoms and rehab for as long as I can. I don't know if I can mention this, but thank you for all your replies, you all actually gave me the strength I needed to push on as I was so depressed and suicidal. My nurse and my medical social worker visited a few times last week. They knew something was wrong and they helped to quickly help me see what I miss if I was gone. I have been also having sudden dizzy spells, quite a few a day, and bladder and bowel incontinence. We agreed to.only get a Foley catheter when I am confined to the wheelchair. Also, he has given me lomotil so if I am going out, I can take one pill an hour before so I wont have an accident and be embarrassed. Thank the lord for depends..LOL. I, as well as he is so shocked with the pace of progression and nothing is slowing it down. I am also showing signs of cognitive decline, which scares me. I am no longer suicidal, I just hate how this disease is robbing so much of me. Thanks to all of you for the support you have given to myself and others. Sincerely, Darlene

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dar58
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17 Replies
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jimeka profile image
jimeka

Praying things will slow down, and you will get some quality of life. Good to see you back on the forum, I was alittle worried, blessings Jimeka

dar58 profile image
dar58β€’ in reply tojimeka

Thank you Jimeka, you are such a kind person. Blessings to you also my friend.

RobertCalifornia profile image
RobertCalifornia

You seem to have a very hard path to follow. Concentrate on the things you like and still can do. Don't give up on your neurologist if he or she is good. Bedside manneris not the most important, knowledge and skill are by far more important. Fortunately my neurologist has both bed side manner and knowledge and skill. She can be tough when she needs o be.

dar58 profile image
dar58β€’ in reply toRobertCalifornia

thank you Robert, luckily for me, mine is the same way. He was so kind and caring, but stern with me. He knows I can't walk more than a few feet now with my walker and he told me, in the house try and walk as much as I can, so as not to lose more muscle tone so fast. He has been my MS Dr for about ten years. I have seen him more this year then all the years combined. Wishing you peace and happiness.

CalfeeChick profile image
CalfeeChickCommunityAmbassador

Sounds like MS threw the book of symptoms at you. Hope you are able to find the joys and blessings in your life. Lynn

dar58 profile image
dar58β€’ in reply toCalfeeChick

Thank you Lynn, I am trying. This year has definitely been very hard. I have other autoimmune illnesses which together its relentless. I have been hospitalized this year more than I can count and in a nursing home -rehab 3 times. I probably shouldn't really complain though because for several years it hadn't been all that bad, we were able to keep them under control for the most part. Wishing you joy and Blessings also. Darlene

SueAB profile image
SueAB

Dar, I'm sorry that you have been hit so hard all at once. I like to say "DEGU" - Never Give Up. So much work is currently being done to find a way to stop and reverse MS, hopefully we will see it in our life time!

Michelednlp profile image
Michelednlp

Sending prayers and positivity your way.

erash profile image
erash

dar58 so glad you have been able to get beyond the thoughts of suicide. Sounds like you do have much to be πŸ™ About but also a very good support system in your health care team.

We are here for you. Please reach out when you need an ear.

Is there a plan to address the progression?

On a light r note, I should have stock in Depends πŸ˜…

positiveness profile image
positivenessβ€’ in reply toerash

True erash! Nature has it's own time to be ready to go, and we have a tough time holding it.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

dar58 so glad to see you back! And wonderful that you got to see you're Neuro. I can understand about the drive tho, mine is 2hrs awayπŸ˜‘

State of mind l feel is so important, especially for us. If we don't have a good one, MS will eat us alive. I'm really happy that your on the right path now *hugs*

Hang in there always!!

JesπŸŽ„

ps l should own poise by now ugh lol

Karen-x profile image
Karen-x

So sorry Darlene. I will be praying that the disease halts. It sounds like you have a great support system around you and thank God for that!

positiveness profile image
positiveness

Hi Dar58. It sure does look like you are having a tough time right now. I strongly hope and pray you start feeling better soon. I know this is a great place to get many different insights from many different people.

greaterexp profile image
greaterexp

Bless you for sharing what is going on with you. I so admire you for getting help with your depression and learning to deal with your diagnosis. I so wish I could wave a wand and cure us all, but I'm so glad we all share our difficulties here. You've overcome what may be the most difficult problem we face, which is of our attitudes. You're winning a battle we all hope to win.

You are in my prayers, and I hope I see you here often.

Amore55 profile image
Amore55

Dar, I am so sorry you are getting slammed with progression. I am proud of you for reaching out for the help you needed. The world needs strong women like you! I will keep you in my prayers. Keep in touch. Kelly xxx

jackiesj profile image
jackiesj

Dear Darlene, I see such a strong person who expresses so well...we all hate what disease does.I can tell YOU are still there.sometimes when I cant show up here I hold each person in the center of my heart...I am not alone God has said...see all these people..they get it....!sending a hug...

Lucyinthesky1 profile image
Lucyinthesky1

Darlene, hope improvements are around the corner. You are in my prayers.

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