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Multiple Sclerosis (MS) - please introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Oct 20, 2016

Let's talk about living with multiple sclerosis.
As Community Director of Connect and moderator of the Brain & Nervous System group, I noticed that several people were talking about MS, but those discussions were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

smilton | @smilton | Apr 21, 2023
In reply to @tonyiarobinson "Hi, my name is Tonyia and I have been diagnosed with MS for 37 years. Symptoms..." + (show)
@tonyiarobinson

Hi, my name is Tonyia and I have been diagnosed with MS for 37 years. Symptoms started in college but I was diagnosed with mono-like syndrome. I was diagnosed with relapsing- remitting MS and became worse after birth of 2nd child. I was employed as an engineer for 24 years until I had horrible spine pain (paraspinal muscle spasms only relieved by Botox injections). I mostly suffered from pain, muscle spasms, rigidity, neuropathy. I had an episode of blurred vision. Most relapses I experienced numbness, weakness, neuropathy (right, left or both sides of my body, but worse in my hands). I was blessed to remit so I could play oboe, do gardening, ceramics, bike rides, short hikes unless it wasn’t too hot ( heat sensitive). Sometimes a cooling (ice) vest helped me stay out. But if too warm, I did indoor activities like movies, plays, concerts or visit museums/galleries. In last 5 years or so, I now have active secondary progressive MS. Which has slowed me down; loss stamina and fatigue easier; muscle spasms, pain and rigidity is much worse - some time’s debilitating. I had to get a knee replacement for damage in my knee and contracture (couldn’t straighten my right leg to walk). I tried various DMTs: Betaseron, Avonex, Copaxone and Gilenya. I stayed on Copaxone until now we assessing whether to start me on Ocrevus to help manage my MS. My recent relapse was after mother passed away 9/2020 and terrible business with settling her estate with 2 younger brothers. Now both parents and a older/younger sister are dead. I miss my mom and older sister; we talked about everything and shared same hobbies/interests. I had my worse relapse in 30 years after settling mom’s estate. Loss father-in-law one month after my mom; too much sorrow. I have remitted mostly, new lesion located in frontal lobes, worse muscle spasms and sciatica from piriformis syndrome. I feel I have progressed more during the Covid pandemic; more isolation and less physical exercise and activity. I did have a right bunionectomy and a right knee replacement (improved walking and climbing steps). I had eye surgery to cosmetically move my right eye; nerves causing it to drift to the right more. It made my children and their friends happier for me. (All boys - smile). My stamina and fatigue is worse which frustrates me. I can play oboe but very exhausting after 1 hour. Cognitive skills are a little slower: word recall. I do enjoy reading/listening to books and listening to music, and still garden but very slowly.

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Now listening to you describe years and stages and symptoms of Ms/ I see myself/I have denied this for years due to other health problems-but the terrible fatigue with little exertion and the awful stiffness has no other explanation at this point/ combined with everything else my life is totally different now/I am a different person/

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kgrainger | @kgrainger | May 10, 2023

I have all the symptoms of MS my spinal tap came back negative but my MRI showed that I do. I read that 10% of people have MS even though spinal tap is negative. Any one else know if this could be true? I also have graves and RA

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medmis | @medmis | May 19, 2023

Hello, my name is MedMis as in "Medical Mistery" because I never get a diagnosis yet I am dissipating :(. I wrote this on someone's post, but since this one is more recent/active, I thought I'd posted it here too. I have been feeling sick for the past 3 years, more than that, but in the last 3 yrs things started to get way worse. I have no answers yet. Whenever we hit a wall, doctors just stop searching. In 2017 I was diagnosed with Fibro at Mayo in MN. I can distinguish the pain between Fibro and something else. This is not the same pain! And there are no painful touch points like fibro. I was diagnosed with thinning of retina (not sure if it can be related to MS). I also have high positive ANA and a possible Sjogrens (biopsy came abnormal). I have two autoimmune diagnosis confirmed: Microscopic Colitis and Granuloma Annulare. GA is a skin condition, with painful lesions on hands. Now extended to my feet and toes. When I am in some flare up, GA goes nuts with the inflammation, and I can barely use my hands. I am trying to go back to Mayo again, and advocate for answers. I have a long list of other diagnosis, unfortunately. Btw, two of my friends had no lesions on their brains on MRI scans, here, locally (Iowa) and few surrounding areas. One of them went to Alabama to some neurologist and after one MRI he told her she has multiple lesions and confirmed MS. She's in a wheelchair now, can't speak much, etc. Very sad and scary to see your friend suffering like this :(. The other one is still looking for answers, and she also diminished A LOT. These are my symptoms, among others: Extreme fatigue, tremors in voice and hands. And the head sometimes. I have joint pain, swelling, stiffness. Feet, legs, hands and face swelling (around the eyes), balance issues, muscle weakness and spasms, involuntary movements, right side of the lips looks droopy, pins and needles in feet, legs, and hands (right side affected more than the left), heavy legs, like I'm carrying weights on them, hard to move them sometimes. Many cognitive issues. Lower back pain, pain in neck, shoulders and elbow, knees pain. I am sure I didn't list it all.... If anyone had similar or the same experience, please respond. I'd like to hear how you're doing, were you able to reach diagnosis, what was done and how the treatment is going (not in this order ;), just anything you feel could benefit me in searching for answers. Thank you all!!

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kgrainger | @kgrainger | May 24, 2023

Is it possible you have MS if your brain MRI shows signs, you have all the symptoms but your spinal fluid is negative?

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | May 24, 2023
In reply to @kgrainger "Is it possible you have MS if your brain MRI shows signs, you have all the..." + (show)
@kgrainger

Is it possible you have MS if your brain MRI shows signs, you have all the symptoms but your spinal fluid is negative?

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Hi @kgrainger, I moved your question about spinal fluid testing negative to this existing discussion where you can connect with other members living with MS.
- Multiple Sclerosis (MS) - please introduce yourself: https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/

I also found this information that might be helpful for you.
"MS can be present even with a normal MRI and spinal fluid test although it's uncommon to have a completely normal MRI. Sometimes the MRI of the brain may be normal, but the MRI of the spinal cord may be abnormal and consistent with MS, so this also needs to be considered." Read more in Symptoms & Complications of MS Diagnosis Using MRI Test: https://www.everydayhealth.com/specialists/neurology/complications-of-ms-diagnosis/

What are your next steps?

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1 reply
kgrainger | @kgrainger | May 24, 2023
In reply to @colleenyoung "Hi @kgrainger, I moved your question about spinal fluid testing negative to this existing discussion where..." + (show)
@colleenyoung

Hi @kgrainger, I moved your question about spinal fluid testing negative to this existing discussion where you can connect with other members living with MS.
- Multiple Sclerosis (MS) - please introduce yourself: https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/

I also found this information that might be helpful for you.
"MS can be present even with a normal MRI and spinal fluid test although it's uncommon to have a completely normal MRI. Sometimes the MRI of the brain may be normal, but the MRI of the spinal cord may be abnormal and consistent with MS, so this also needs to be considered." Read more in Symptoms & Complications of MS Diagnosis Using MRI Test: https://www.everydayhealth.com/specialists/neurology/complications-of-ms-diagnosis/

What are your next steps?

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Thank you

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kgrainger | @kgrainger | May 24, 2023

Hello my name is Kim Grainger

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Brandilyn430 | @brandilyn430 | May 26, 2023

Hi! I'm 46 years old and have been having worsening symptoms (of what I wasn't sure because I never put them all together) for about 5 years now. I am a mother of 4 and an RN and I work all the time. If anyone here works in healthcare, you know we never take care of ourselves appropriately. It started with tingling extremities. Weird electric shock type pains. Some urinary incontinence, but rare enough that I wasn't paying attention. And again, 4 kids. But then I was walking one day about a year and a half ago and my whole bladder just emptied randomly. On and off I have trouble finding words. I've gotten very forgetful. But I was able to find excuses for most of that. With the incontinence I finally saw a doctor. I had an mri and this was the impression...
Impression
IMPRESSION
A few nonspecific FLAIR hyperintensities are seen in the periventricular and subcortical white matter with mild interval progression. Included in the differential diagnosis is a demyelinating process, an ischemic process, a metabolic process, a vasculitis, an ischemic process, sequela of migraine headaches, and other etiologies.

My doctor wanted me to see a neurologist as soon as possible. That was over a year ago. First available to be seen was 10 months out. And then we moved. My appointment had been scheduled for last November. Where we are now I brought this info to my new doctor. He was also concerned and also wanted neuro. They, too, are many months out. I'm kind of frustrated not knowing if this is an MS situation or if I'm fine just going about my life at this point because I don't have the time or energy to advocate for myself. I'm sorry if this is not appropriate to this page since I do not have a diagnosis. I just wasn't sure where to talk about it

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1 reply
tedjones77494 | @tedjones77494 | Jun 3, 2023
In reply to @kgrainger "Is it possible you have MS if your brain MRI shows signs, you have all the..." + (show)
@kgrainger

Is it possible you have MS if your brain MRI shows signs, you have all the symptoms but your spinal fluid is negative?

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Have your Dr’s ruled out CIDP?

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1 reply
kgrainger | @kgrainger | Jun 3, 2023
In reply to @tedjones77494 "Have your Dr’s ruled out CIDP?" + (show)
@tedjones77494

Have your Dr’s ruled out CIDP?

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Basically he just tested for MS with MRI of the brain told me he thought I had MS then did the spinal tap said it was negative. Told me I don’t have it and come see him as needed. I have lower limb numbness some facial numbness tightness around chest and fatigue is horrible. I also have RA and graves. I have gone through so many doctors and test with no answers

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