New to group, in the process of dx, could use support

[teacherellen]

Hello,

I have been lurking for a good month and finally decided to post. I am so impressed with the support and guidance given to each other.

What brings me here is the last 5 months of my life. In Sept. I started feeling "light headed" off and on, could not connect it to anything. Dr said it was anxiety as I "must be" a stressed out mom... it never sat right with me as I had been feeling at my best physically than I had in years. The light headedness came off and on, then my rib cage started to get sore. Then the left side of my neck had intense burning and discomfort, kind of like a stiff neck, but on my left side only. After 4 trips to the dr., numerous bloodwork, EKG, echocardiogram, trip to the ER... you know where this is going.

My GP referred me to a rheumatologist as the family has a history of autoimmune disorders, specifically arthritis. My rheumatoid factor came back as a "weak positive". After talking with the rheumy, he felt I should have an MRI of the brain and C-spine. Before I got to have them I had a left side episode of numbness from my hand up to my jaw, and talking slurred. Called rheumy, they sent me to ER (2nd trip), and another round of tests began. Long story short, everything has come back normal, including the MRIs. The rheumy felt that even though the tests were normal, I should see a neuro as my symptoms continued left side numbness, tingly feet most of the time, rib cage sore, left side weakness developing).

I saw one of the best neuros on the East Coast. He spent an hour with me going over everything. He said possible MS or Fibro. I know in my heart it is MS as I have never heard of Fibro being one sided. He is following me, but I think I should ask for more testing...

My questions are-- 1. Should I ask for an MRI of the thoracic spine as that is the only part of me not looked at? 2. For those of you with PPMS, did anyone have a similar experience where the attacks came on very quickly, one after the other in a series of 2-3 months? Things seem to have settled down attack-wise. I have good and bad days, but no symptom has ever disappeared completely. I feel things are slowly getting worse, especially my left side (heavier, clumsier).

I have always been healthy, am only 35 and have a beautiful family and a career. I have started therapy to help me through this tough time of "waiting". I think this forum could be beneficial to me in learning about all of your experiences. I have felt very isolated and alone over the past 5 months as many people in my life think I am crazy, as I look "just fine" on the outside.

Peace to all and thank you for listening.
teacherellen

[teacherellen]

more info

I should also mention that my swallowing has been "off", left side neck muscles feel weak, memory is not good lately, mixing up words.

3rd question-- Is it possible I had the MRI of the brain too early? A few wks after the MRI, I started to have severe head pressure, above the roof of my mouth and left sided head aches.

Thanks for listening. teacherellen

[KarenR]

Hi teacherellen!

Welcome to MS World

I've moved your thread to the General forum where you are likely to get many more answers.

Be well,

[mchugh725]

I can't say for sure what you have as I am not that familiar since I was just diagnosed in 9/10. But I do know I had an MRI of my brain, thoracic spine and the definitive was the Spinal Tap. My brain had some nonspecific white spots they were not sure of my since they were on the right side of my brain and the whole right side was numb they did not think it contributed to it. But the MRI of the thoracic spine showed lesions and the Spinal came back positive for it. I guess they checked a lot of stuff like Lyme disease and other diseases from my spinal fluid but there were like 6 of these Bands they called them that gave them the answer. I had the whole right side and my left leg and since several steroid treatments I regained everything but my right arm. So if you get the diagnosis maybe steroid treatments can help you also.

Left Sided problem people UNITE

As I stated in a previous posting: I turned to my doctor and said "I am just a person whose left side hurts" and he replied back; "I am just a person whose right side hurts".

I guess he was trying to be amusing. But anyway I am also not diagnosed and that same doctor who said that refused to even refer me to a neuro (that was about 20 years ago). I really want to show him how I finally "went blind" in my left eye with severe optical neuritis damage that has now lasted 10 years though improved.

I assumed that when my left side hurt that it was from my car wreck neck/spinal chord injury. I was even told that if I rotated my head in a certain way I could sever my spinal chord (???).. Doctors at that time (1970) told me that later in life I would have some problems develop. So I thought the neck pain was part of that...and the left shoulder drawing up; and the left side headaches; and the left thigh going numb and dead; and the left hip joint going out, etc.

I was just a person whose left side hurt and didn't work. Now I am a person whose left eye is damaged but most of the other left side stuff has gone away.

Same as you I think a MRI of that area of spine might show something but so far since I got better I haven''t bothered to try anything but if I had known that another MRI was possible years ago when I was sicker........I would have wanted one. You sound that sick so if they can give you a spinal MRi maybe it would show someting.

I hope you are able to overcome this attack you are having and I should say that it seems like there are all kinds of other causes than MS that might be involved here. I hope you are successful at discovering the problem and cure. In my case I just had to wait it out.

[Kippy]

Hi and welcome!

I am a retired teacher, who was diagnosed with either SPMS or PPMS in 2007 at the age of 59. After a year and a half of 11 MRIs, lumbar puncture, all kinds of nerve tests, a sural nerve biopsy by the rheumatologist who thought I had a circulatory problem, etc. etc. etc., I was finally told that I had MS.

My suggestion.................Get that thoracic MRI and any other tests that might give you an answer. The "not knowing" is really tough, mostly cause you live in denial and the doctors do unnecessary tests. I was told many many times, by doctors, that I was "too old" to get MS, and the neurologist who finally diagnosed me believed that and wouldn't even look at all my MRIs (probably cause they were from a different neurologist!) Although the diagnosis was bad, at least I knew what I was dealing with.

(I also live in the Northeast, Boston area. Don't you just love all the white stuff we're getting? What a winter!)

Good luck to you. I hope you get an answer so you can deal with whatever it is.

[aitch10]

[QUOTE=teacherellen;1271918]Hello,


My questions are-- 1. Should I ask for an MRI of the thoracic spine as that is the only part of me not looked at?
I'd say yes. I went to an orthopedist before a neuro(thought it was a pinched nerve). He did an MRI of my L spine. Once sent to the neuro I was given a C spine MRI and one of my head as well as a spinal tap.



I have always been healthy, am only 35 and have a beautiful family and a career. I have started therapy to help me through this tough time of "waiting". I think this forum could be beneficial to me in learning about all of your experiences. I have felt very isolated and alone over the past 5 months as many people in my life think I am crazy, as I look "just fine" on the outside.

I know how you feel. I was DX'D 8 years ago so am used to it, but I am only 37 and have a young family.