HealingWell
Search Close Search
☰

How do you read the spinal tap results?

Support Forums
>
Multiple Sclerosis
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/23/2014 5:44 PM (GMT 0)
I had pain in my chest & left upper arm when my symptoms began...they ran several tests on my heart to rule it out. Maybe that is why they are doing the chest CT scan? My heart tests all came back ok..then they concentrated more on MRIs and the whole possibility of MS diagnosis. *my arm & chest pain eventually went away...for now anyway.
Posted 5/1/2014 4:03 PM (GMT 0)
Now a pulmonogy appointment.

Associated Diagnosis: Abnormal CT Scan, chest

CT chest showed one granuloma per report. Serum ACE elevated. Has numerous neuro sx with T2 change on brain Mri but LP no inflammatory change. Eval for possible sarcoid.

Also, I have had increased muscle pain in my upper arms, neck, shoulder area. I was woken up the other night from 3-5 am with waves of stinging pain ( similar to when you are injected with a local) down my upper right arm. I am a pretty tough cookie and I had tears in my eyes and even left out some wimpers ( my dog nearly crawled on top of me!)

Seems like when I am close to a diagnosis, more tests are needed. I go on 5/16. I wish they could give me something for this achy pain. Getting close I hope:)
Posted 5/4/2014 4:21 PM (GMT 0)
I don't have the same pain in my arm now...I think the 3 days of a steroid I.V. in the hospital fixed that problem by making the active lesion on my medulla nonactive. I still feel pressure on my left upper arm like I have a blood pressure cuff on..I've gotten used to it though. I just got put on a low dose of Baclofen to possibly help the crampy stiffness I have in my hands. My MRI last Thursday showed 2 new lesions but both are inactive so guess that's good news. I hope you find out something soon!
Posted 5/6/2014 3:36 PM (GMT 0)
going to the ms clinic in Oakland
Posted 5/8/2014 9:40 PM (GMT 0)
well primary progressive ms. i start infussions next week. the ms doc in this area was booked until 7-31-14 so i made an appointment at the Cleveland Clinic for 5-21-14. road trip!!!
Posted 5/8/2014 11:51 PM (GMT 0)
Yikes! That's a rough diagnosis! What infusions will you be doing?
Posted 5/9/2014 1:54 AM (GMT 0)
Why is it rough? Give me the details on how this differs from other ms diagnosis? Medrol 1,000 mg 3 days in a row.
Posted 5/9/2014 7:33 PM (GMT 0)
ouch. just read up on it.
Posted 5/9/2014 10:14 PM (GMT 0)
I'm sorry! I'm sending good thoughts and prayers. Just remember, everyone's experience is different and their own. You could be just fine. You are going to learn how strong you really are.

Please ask questions. Find support. Make sure you surround yourself with supportive and understanding people. Take care of you.
Posted 5/13/2014 10:38 PM (GMT 0)
Does the heat make anyone worse? I am "freezing up"
Posted 5/13/2014 11:24 PM (GMT 0)
Heat wrecks me. It makes all my residual symptoms worse.
Posted 5/13/2014 11:36 PM (GMT 0)
I avoid heat at all costs. I have a terrible time trying to cool down.
Posted 5/14/2014 12:00 AM (GMT 0)
what about if you are kept "cooled down" like sunbathing at a pool?
Posted 5/14/2014 12:54 AM (GMT 0)
Yes, that works for me. I live in Phoenix (yikes, it's hot) and I swim outside daily. I can only stand excessive heat for a short time. I make sure there is a/c everywhere I go!
Posted 5/14/2014 2:13 AM (GMT 0)
My closest sister lives in Phoenix!! Hope to travel out there sometime! I was thinking of getting a pool pass for myself and my daughter for this summer. get the vitamin D but stay cool.
Posted 5/23/2014 6:46 PM (GMT 0)
Went to Cleveland Clinic. Devised a treatment plan so that is good. Physical and Occupational therapy, new medication, infusion....question. On the sumary, it indicated Progressive-with relapses MS. I cannot find any info on this??

Post Edited (abbydoo32) : 5/23/2014 12:52:09 PM (GMT-6)

Posted 5/24/2014 1:09 AM (GMT 0)
I googled "progressive relapsing MS". The statement below came from webMD.

If you have progressive relapsing multiple sclerosis (PRMS), your condition will get steadily worse from the very beginning.
But you also will experience distinct relapses, with or without full recovery. Between relapses, the disease continues to gradually worsen.
PRMS is the least common type of multiple sclerosis. It affects about 5% of all people with MS.
Posted 5/24/2014 3:08 PM (GMT 0)
wish I was not such an over achiever and get the least common! Gosh almighty.....well, it is what it is and moving on....I read up about the MS med I will be taking, tecfidera. From what I have read, people have experienced a lot of sickness the first month or so. So sick actually, that they were basically home bound due to vomiting, pain, insomnia. terrible stomach pain and bathroom use. People have had success with taking an aspirin with the med to reduce symptoms. This is pretty discouraging. Oh well, you have to stick with it and let your body get used to the meds before it calms down but really not looking to a month of torture.
Posted 5/24/2014 4:45 PM (GMT 0)
Kelly,
I'm so sorry. You have a fantastic attitude. I don't have any experience with tecfidera. I've been on copaxone for 7 years. When tecfidera came out, I looked into it. I decided against it due to those side effects.

Rembember that not everyone experiences bad side effects. You could get a slight case and find it manageable.

When do you start?
Posted 5/24/2014 4:58 PM (GMT 0)
she was e mailing her notes, diagnosis and script to my neuro in PA. I start infusions next week and will be starting the meds as well I think. I am doing good for now. I have the attitude of it is what it is and let's move forward. I suspect my attitude will be changing/worse depression as time goes on. Maybe not, we'll see.
Posted 5/30/2014 1:04 AM (GMT 0)
Need to vent. MS doc said we are going to get started on Tecfridera after she sends to my neuro. Requested and appointment the beginning of June, they scheduled me for August. I e mailed her and told her my concerns. I am sure if she was told she has a progressive dibilitating disease that there is no cure , she would want to get on the medication to slow the progress ASAP as well. I am pissed.
Posted 5/30/2014 11:30 AM (GMT 0)
Oh wow. I'd be pissed too! Call daily and check for cancelations.
Posted 5/31/2014 6:58 PM (GMT 0)
sat in the sun, caught some Vitamen D, now shower and trip to store to pick up meds and use my coupons!!
Posted 6/2/2014 12:15 AM (GMT 0)
Nice!!!
Posted 6/10/2014 1:16 PM (GMT 0)
I found a new neurologist. I like her - she is very experienced in MS. I saw her last Monday (she had a cancellation) and I signed the paperwork for the Tecfridara. I received the paper in the mail for my old neuro 2 days after I saw my new one. I threw it in the garbage!! I am on 5,000 vit D and a vit B-12. I was very disappointed with my old dr and the office staff. With all the blood tests, she never even checked my vit D level. I had to talk to her staff like 5 times to explain they needed to order the infusions, I could not call to have it done!! So glad I now have one that knows what she is doing.
✚ New Topic ✚ Reply
123