Spinal Tap in February, Docs leaning towards MS diagnosis 23 years old

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Becca5766
New Member


Date Joined Jan 2015
Total Posts : 6
   Posted 1/15/2015 12:10 AM (GMT -6)   
Okay so I will introduce myself here. My name is Becca and I am 23 years old. I grew up with a mother with MS my whole life, and she raised me to be who I am today. Long story short my issues began at age 18 when I woke up one morning and couldn't see out of my right eye. The ER flushed it and I could still not see. Went to the eye doctors and got an optic neuritis diagnosis, when they did an MRI on me only one lesion was found at this time (they weren't keen on diagnosing me with MS because it was one lesion, come on the optic neuritis was a red flag) so I decided to keep living my life normally once my vision came back. I was doing well until an episode of vertigo where I couldn't stand up for three days when I was 21. This subsided, but I was too scared to go back to the doctor.


I am 23 now, and am currently on medical leave since November, because I was having vision changes and weird heavy/lightheaded head sensations. I almost passed out at work, and came to the conclusion that it was time for the doctor and ask for another MRI because something felt wrong. They found several white matter lesions in my brain so the doctors are leaning towards an ms diagnosis like my mother. They are doing a spinal tap in February, than figuring out my treatment once this is verified. In the past week I have had weakness on my right side, with a numb/heavy feeling in my right leg/right arm, especially after showering or being in the cold (even exercising) so things are difficult and scary right now, sometimes I feel like I am dragging my leg through mud as I walk. I'm so young and I am preparing for the diagnosis but mainly joined here for support through this new journey. I am terrified and can't get an appointment for these new symptoms sooner. Is there any advice you all have for me? In a matter of months I can't do half as much as I used to (I previously worked overtime, could carry heavy laundry, walk far without my head feeling funny) and I am anxious to get meds so I can somewhat have my life back.

How did you cope with your MS diagnosis? What medications are good to try at first? How do you exercise (what kind) without exhausting yourself? Do you recommend medical marijuana as an additional way to treat symptoms? What symptoms do steroids have? (If this keeps up I have a feeling I'll be on some if this is a flare up) Did you still choose to have children?

Thank you for reading.. a lot going through my mind

Post Edited (poisoneddoll) : 1/15/2015 11:47:03 AM (GMT-7)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 1/15/2015 11:09 AM (GMT -6)   
Hi Becca,

I just got to work and I found this. I want to spend more time responding, but I don't want you to think you are being ignored! Hang in there. I'll try to get back to you in a couple of hours.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Becca5766
New Member


Date Joined Jan 2015
Total Posts : 6
   Posted 1/15/2015 12:10 PM (GMT -6)   
Thank you so much! (: Every bit of input helps. I forgot to mention my mom has relapsing remitting, and my uncle had progressive before he died of the complications when I was 7. So this does run in my family, a lot of people have gotten MS around the area my mother grew up in.

My right side heavyness/numbness has eased today but is still noticeable. I am remorseful because I need to shower today and know it will worsen after (even with warm water)

I am angry, upset, and sad because I don't feel like the same person I used to be even though I know I am.

I cared for my mother for years and now I have this disease that I originally helped her with. She is helping me through it instead when I would have her lean on me to walk during relapses. Now its me she's bringing to doctors and watching over. Me....

I know it will get better and I pray I can function at work normally after treatment and gain full feeling in my right side again...

Post Edited (poisoneddoll) : 1/15/2015 11:23:35 AM (GMT-7)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 1/15/2015 7:59 PM (GMT -6)   
Hey Becca,

Sorry....long day. Ok so I'm thinking your diagnosis is iminent. I'm so sorry! I'm sure you're angry, upset, scared etc. I know I was! Take this one day at a time or even one hour at a time.

You might consider getting the book "MS and your feelings" by Allison Shadday. I found this helpful. Also, know that you are going to need lots of emotional support. A therapist, good friend(s), a shoulder to cry on is so necessary.

Have steroids been offered yet? Solumedrol? It's typically an IV infusion for 3-5 days. Some people find some symptom relief from that.

I can't really address the medical marijuana subject. I don't need anything that is going to mess with my memory! Haha.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Becca5766
New Member


Date Joined Jan 2015
Total Posts : 6
   Posted 1/15/2015 8:31 PM (GMT -6)   
This is my first appointment with the neurologist in this area coming up in February so steroids have not been offered yet My PCP is leaving it in their hands now. I appreciate the support and the book suggestion, it means more than you know. I do have a therapist and she is really nice so far. Did you ever get a spinal tap and if so how bad was it?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 1/15/2015 9:26 PM (GMT -6)   
I did have a spinal tap. To be honest, it wasn't much fun. You might ask for fluoroscopy to assist with finding the space right away. I didn't have that. It was a bit ouchy but it didn't last long.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Becca5766
New Member


Date Joined Jan 2015
Total Posts : 6
   Posted 1/15/2015 11:41 PM (GMT -6)   
Never heard of that but that sounds way better to ask for so they find the space quicker. I also just ordered the MS book you recommended on eBay for cheap, I should have it within the week (:

Bad Mojo
Regular Member


Date Joined Aug 2010
Total Posts : 70
   Posted 1/16/2015 1:20 PM (GMT -6)   
If the spinal tap is done by an experienced doctor, it only takes a few minutes and is relatively painless (note "relatively"--everyone feels pain differently). The first time I had one, they let an intern try. I understand interns need to learn so I did not protest. However, after about ten minutes of futility, an experienced doctor had to take over--after that, it was done in seconds. Moral of the story: ask the doctor how many spinal taps they have performed. If they are inexperienced, ask for someone who is.

Also, remember that there are thousands of people that have MS and live perfectly normal lives. Many don't even have permanent symptoms--just symptoms that flare up occasionally. Remember too that there are many, many people that have much worse diseases. After my MS diagnosis I felt my life was over. Then I met a man that had cancer. He was truly sick. But he did not have insurance and he had 5 kids to feed so he had to keep working. After meeting him, my MS didn't seem that bad anymore.

My treatment is Tysabri. I have it administered at a cancer treatment center. Every time I go there I am reminded how lucky I am.

Don't be afraid. You will adapt and overcome. I try to believe that I was not given this disease as punishment, but I was given it because I am strong enough to handle it. You are too.

Becca5766
New Member


Date Joined Jan 2015
Total Posts : 6
   Posted 1/16/2015 9:49 PM (GMT -6)   
Thank you for that kind reminder that things could be so much worse. I hope I only have occasional flareups, but everything happens for a reason and you are right, it is about being strong enough to handle it. The doctor i'm seeing has done 100s of spinal taps so it should only take a second, I just feel anxious about how uncomfortable it is said to be. She also graduated from harvard medical, so I have faith/am confident that I have one of the top neurologists in my area (she also handles my mother as a patient and does well with her)

today I showered and only felt a little bit of heaviness in my right leg when I got out, so the symptoms seem to be improving *knock on wood*

I only have enough numbness to know I can feel things better on my left side, and heavy ness to feel a bit of a weight but that is nothing to what I felt days ago. I am keeping a book with symptoms I have been having over the past month for my neurologist.

Thank you both for the support. <3

Post Edited (Becca5766) : 1/16/2015 8:52:09 PM (GMT-7)


MaRoStiKa
New Member


Date Joined Jan 2015
Total Posts : 4
   Posted 1/21/2015 9:06 PM (GMT -6)   
Hi Becca, I just recently joined this site as well. I'm 25 years old and I don't have MS that I know of but am seeing a rheumatologist February 12th because I have been having muscle pain in my groin, chest, upper and lower back, forearms, left side of face and neck and also my knees. I just wanted to say I hope everything goes well for you! This seems like a great forum board to get support and help. A lot of people have great information on what works for them and what doesn't. So good luck!! :)

eat2bwell
Veteran Member


Date Joined Sep 2014
Total Posts : 534
   Posted 1/24/2015 9:14 AM (GMT -6)   
Some people find diet helpful in controlling MS. Dr. Swank and Dr. Walhs have developed diets which can help some people.

Lanie G
Forum Moderator


Date Joined Nov 2006
Total Posts : 6231
   Posted 1/24/2015 2:11 PM (GMT -6)   
In answer to eat2bwell, here is an excerpt from the WebMD website: Swank diet. This diet, developed over 60 years ago, has very low levels of saturated fats. Though some studies have shown promise, none has shown a convincing benefit, Bowling says. "I don’t think the Swank diet is harmful, but it’s hard to stick to," he says.
Wahls diet. This diet emphasizes fruits and vegetables -- 9 cups a day - but no studies have shown a clear result. Bowling believes its emphasis on certain nutrients leads some followers to “use high doses of many supplements.” He cautions that the safety of such high doses has not been proven. Discuss any supplements you're taking with your doctor, even if the products are natural.


Please consult with your own doctor before following diets promoted with no scientific proof they are helpful. Diet is not the answer to every malady.
Lanie

diabetes moderator
diabetes type 2 controlled by diet and exercise and
metformin
very low carb way of eating
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