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Nerves and Tests...MS

Mar 23, 2015 10:51 PM

So I don't know if any of you have MS but recently my doctor decided she was going to test me for it.
I'm horrified that this might actually be what my body has had for years. It's relieving that she is actually working with me since my past PCP didn't listen to any of my concerns.
My tremors and muscle spasms have been insane and unpredictable recently and that's one reason why she is so focused on finding out my condition and treating it.
I have so much anxiety and have been wigging myself out since treatment for it includes me getting a picc line, injections and maybe even going through chemo once a month. I'm terrified to go through these treatments. I know it's just an in progress thing right now so I shouldn't be freaking out.
What treatments have you gone through with MS? What meds do you take? What were your original symptoms? Did your doc suggest monthly chemo?
Ahhhh! *twithes and spasms into the darkness*

Mar 24, 2015 4:31 AM

Wow that's a lot to gulp. I've never heard of chemo for MS. Though I'm not an expert. Www.nationalmssiciety.org is a fantastic easy to browse website with information on ms diagnosis, treatments and explanations. If you are facing testing for MS, I highly recommend reading the website.

Mar 24, 2015 5:34 AM

Have you had a brain MRI? Testing for diagnosing MS is extremely difficult.

I am glad you have a doctor who is invested in you and to finding answers! Let's hope it is something other than MS amd these assessments will reveal which.

I personally have not heard of chemo for MS but don't know all that much about it other than treatment is typically mostly about monitoring amd controlling the symptoms as there is no "cure".

Relax sweetie, breathe...meditate, something! Anxiety will only further exacerbate your symptoms. I would definitely recommend a therapist to help guide you through this and some relaxation techniques. That can help always (in my opinion but I am a wee bit biased lol) regardless of what you're facing.

Mar 24, 2015 9:13 AM

Chemo for ms? That's a new approach. Why would that be the choice? I'm mostly curious as I work in the field of cancer and am always interested in chemo uses. I'm gonna google this but would love you I post any info or links you're comfortable sharing here

Mar 24, 2015 1:03 PM

I'm very confused about chemo & picc lines with MS. I've never heard of that. I too am undergoing testing for MS, and I won't take chemo. I know it helps a lot of people but it scares the crap out of me.

Life is life and death is death, and I'm ok with either one. I've always said there's several things I won't do to extend my life; cancer treatment, kidney dialysis, organ transplant, or botox injections to look younger (lol I'm just fine with my gray hairs and wrinkles 👵😉). I'm ok with comfort treatments, natural treatments, lifestyle changes. When I was younger and less knowledgeable I might have. But I know much more about side effects & consequences & how my body reacts strangely to many things.

Kashiiguren, I hope your doctor is mistaken in the method of treatment. I know the waiting to know is stressful because I'm going through it too. I'll be praying for you. 🙏🌼

Mar 24, 2015 10:33 PM

My friend has MS and tecfidera has been a lifesaver for her. She works out every day and is pretty physically active, tecfidera has basically kept her in remission. Wishing you all the best, it's such a scary disease to diagnose and understand.

Mar 25, 2015 3:49 PM

Thanks Libedon! I'll look into the tecfidera. I'm scheduled for my MS lumbar puncture next week. I hated the epidurals when I had my babies. I get sedation for my ESIs. I've had several Myelograms and hate them. I'm literally freaking out about the lumbar puncture! They said there's no sedation. Keep me in your prayers please. 🙏🌼

Mar 25, 2015 5:28 PM

I have a friend with ms and I have fybromyalgia which has some of the same symtoms. Even though I don't have ms I do understand major mutlipul pain throughout my body Ialso have diabetes with millitus and nueropathy which causes nerve damage then major aarthritis, and have to have hip replacement but cannot right now because I am morbidly obese, so need to have bareactic surgery first before hip replacement can be done, my friend with ms takes shots and sees doctor a lot or doctors I'll ask her whether that's normal or not OK?

Mar 26, 2015 4:34 PM

Because ms is an autoimmune disease one way of treating it is to suppress the immune system. If othe things don't work chemo can be used for this.

Mar 26, 2015 5:56 PM

Understandingroses, I'll keep you in my prayers for the surgeries you need, and that you'll recover from all quickly. My neurologist doesn't think it's my fibromyalgia; he says there's too many neurological symptoms & signs of weakness & damage. He suspected MS back in November.

Obione, I still don't understand how suppressing the immune system helps fight MS (or even cancer for that matter). Maybe its the fibro-fog but some things I just can't get. But thanks for the info.

Kashiiguren, I am praying for you. May God give you the courage & strength to get through this. 🙏🌼

Mar 26, 2015 7:34 PM

Suppressing the immune system helps with auto immune diseases because it is the over active immune system causing problems.

Mar 26, 2015 7:49 PM

Thanks Aliya. I don't know why, when I know I should know something, I just draw a blank. I worked in medical records for nearly 8 years, and the last place was long term hospital care. I use to code too, but I can't remember half of it. Names, faces, directions, you name it and I'm like "duh, what?". Thanks again. Hope everyone sleeps well tonight. 🙏🌼

Mar 05, 2016 7:48 AM

Hi there. Not everyone with MS uses chemotherapeutic drugs. Some just use drugs like copaxone to help stop the progression. Some people also use steroids at times. Steroids can be harsh on you as it may cause bone issues. Read the wheelchair kamikaze blog. He has been blogging about MS for years.

Mar 05, 2016 10:02 AM

Flappy , Kashii, you are both in my prayers. My sister-in-law has had MS since she was in her early 40's she is now in her 60's. She maintained employment until she could retire. Now that she has retired it seems her illness has made it difficult to function as she once did. She sleeps 14 hours a day minimum. Did you know MS is hereditary? Now my 30 year old niece (her daughter) has it. She lost her sight initially. But it has come back ALMOST 100%.

Mar 06, 2016 1:02 PM

Don't forget that there are various types of MS. I have two friends who have differing types and their symptoms are totally different.

Mar 06, 2016 2:34 PM

I do not have MS (that I know of) and I have not been tested for it but ar the suggestion of my therapist did a small amount of research on it and she wants me to prod my doctors to try and rule it out. My aunt has progressive MS, but she is not a blood relative.

Definitely do some research to relieve some of your concerns and help you digest this possiblity. Bear in mind some types of MS are only temporary or don't develop every symptom.

Good luck to you

Mar 07, 2016 7:18 PM

Mysisterskeeper, The lumbar puncture was negative on the MS. My neurologist hasn't totally rules it out though because as he put it, "MS can take years of progression before the body begins to display positive test results." But he told me not to keep stressing over it, but concern and focus on what we do know are diagnosed problems; fibro, sjogrens, hypothyroidism, migraines, DDD/TMJD, OA, etc.

Mar 07, 2016 9:36 PM

Hi, I'm sorry you're dealing with so many life altering illnesses. What do you do with your time --when you are able to do anything? I feel like the most boring person on the planet because MS makes me unable to read except in small chunks, and we can't afford tv, plus I'm mostly in bed so I never know what's going on in the world.

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