Multiple Sclerosis (MS) Support Group

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Brain & Nervous System
/ Multiple Sclerosis (MS) Support Group

All my test are coming back normal.

rsimmons
rsimmons
I am going crazy! I have had every test except the spinal tap. I have had an MRI of my brain and it shows white spots. I have so many symptoms I am at the point of hating to talk about them anymore. What they have found is arthritis in my spine along with some disk bulges. My Neurologist says she is not leaning towards MS. She says the condition of my spine can explain the tingling/numbing in my arms and legs. She says it is not so bad as to disable me, but I do not feel capable of working. She does not address my chronic vertigo, my feelings of sudden fatigue, the hot, shooting pains in my head and palms, and the list goes on. I just can not believe this is all Fibromyalgia. I know there is more too my condition. I am so very frustrated. It is so weird to be in a position where you hope your medical test come back bad just because you what a real explanation for your ills. How do you hold on? I just don't know what to think anymore. Is it really possible that all this is mental? I would appreciate any feedback at all.

Thanks for listening.
lchoppel
lchoppel
First thing that came to my mind was that you need a second opinion. Having all those symptoms don't sound like fibro to me, and besides, there is a simple test for fibro, you didn't mention having one, so I'm assuming the doctor just said you have fibro as a catch all disease to account for your symptoms. That is bullshit. I hate the dx of fibro for people by these doctors because they can't think of anything else. First of all it minimizes the fibro disease, and secondly, it doesn't do the patient any good. Your description of symptoms could be alot of other illness' but what about the white matter in your brain??? Hello, have they forgotten that. Why haven't you had a spinal tap? What are these doctor's not doing for you? Get a second opinion!
deleted_user
deleted_user
I agree with Ichoppel - Get a second opinion!
deleted_user
deleted_user
2nd then 3rd and so on unti you get answeres. I went to 4. one was a MS specialist. What a quack. Good luck...
rsimmons
rsimmons
Thank you for your support. I will do just that. My Neurologist has decided to refer me to a Rhumatologist. (excuse spelling) She thinks some of my symptoms suggest connective tissue problems. She said he may order other tests that might reveal something. Has anyone had this suggest to them? If so, what happened? She also said in 6 months we will do another brain MRI to compare to the last one. If there are other white spots, she will consider MS. If not we will do a spinal tap.

Anyway, in the mean time I am just so lost as to what is happening to me.
deleted_user
deleted_user
I Agree with everything everyone has said. Get more opinions. And I completely understand the need to have answers, even bad ones, rather than not know what is happening. It is so scary and frustrating when your body does not behave as it should.

I wish you much luck with a diagnosis!
tjquiver
tjquiver
Hey everyone...just popping in from a relative's house. I'm living the same story!! Have been to 4 Neuro's, 2 Rheumatologists...& numerous other specialists! They continue to tell me that I obviously have an Auto Immune Disease...but can't figure me out! Meanwhile...I'm stuck with the Dx of Fibro...until they can...which does NOT explain many of my bizarre symptoms! They refuse to give me a Spinal Tap also!

Extremely frustrating...to say the least! No fun in this chaotic boat...is it??!! Just know that you are not in it alone my friend! ((hugs)).
~tj
deleted_user
deleted_user
Hang in there. Since October I have been to 4 neurologists. I finally found one who agrees that I have and "unspecified autoimmune disorder" that acts suspiciously like ms even though my spinal tap was normal and my MRI showed some spots but not typical. So, he has me on 1000mcg b12, 5,000 iu D3, and fish oils. He also wants a call if I have another episode and he will start iv steroids to see how I respond and then he is going to repeat my MRI's in a few months. I can accept not being able to have a firm diagnosis as long as I know there is a plan to keep investigating.
JaniceKay
JaniceKay
Am I mistaken in thinking that if any of your doctors suspect MS, a spinal tap can be arranged?

Be careful what you ask for ~ Fibro is no cakewalk either.
JaniceKay
JaniceKay
(was interrupted & couldn't finish my train of thought earlier)

This is where I get very frustrated w/ the NMMS & our overall system ~ I just personally think that there is much overlap of auto-immune diseases & that many of us are mis-diagnosed, or not at all, so the treatment* we get, if any, could very well be totally wrong.

* & the trtmt always = maintenance drugs
rsimmons
rsimmons
I was offered a spinal tap early on, but I am holding off because in my research I have found that there can be problems with it, and as my the doctor who offered it told me, "Even if the Spinal Tap comes back showing some problem it doesn't mean that you will automatically be diagnosed with MS." She has told me this is the case with any tests I have done. So I figure why should I take the risks involved with having a spinal tap done when the results will basically mean nothing. My doctor told me that we will have another brain MRI done in 6 months. If there are other white spots than they see on my current MRI, she will dx with MS.

So now my plan is no matter what she dx I will see the Rhumatologist she has referred me to, and get a second Neurologist's opinion.
rsimmons
rsimmons
A little more about why I am holding off on the spinal tap. I understand that if there is a problem with the procedure there is the use of a blood patch to seal up any leaking. I have a problem with that. I am one of Jehovah's Witnesses, so for me, the use of blood, even my own once it has left my body, is something my own conscience will not allow, therefore is not an option for me. My firm abstinence from blood, and on the sacredness of blood use, is based on many passages in the Bible. Here is just one if you care to investigate it. (Leviticus 17:10-14). Any way, if a leak should occur I could be in a very serious situation. So, as you can see, it is a risk I can not take lightly, and avoid if I can.
deleted_user
deleted_user
I'm in the second opinion court. While there is no absolute definitive "test" for MS, there are three main diagnostic tools, MRI, Evoke Potentials and spinal tap. At the least you should have those AND a second if not third and fourth opinion. And NO, this is NOT all in your mind, your brain maybe but not mind :-)