Multiple Sclerosis (MS) Support Group

This community is a place where members can discuss current events and weigh in on what's going on in the world.

0 Online

Bon67 02/02/2016

Been trying to get a diagnosis of MS for 4 years now. Not that I want MS, but I know in my heart I have it, and would like to get on treatment. I had symptoms 4 years ago and they found 4 lesions on the brain. They said its not MS, fast forward to the past few months, and I have been having odd symptoms again, numbness, tingling, sharp stabbing pains, pin prick, cold spots, depression and weakness in my left leg. I got another MRI a couple days ago which showed two NEW lesions on my brain and one on my spinal cord. I guess they are in the frontal lobe. Anyway my GP calls today to tell me the results from my MRI are stable when he compares them to the last MRI. What does this mean? Are you kidding me? What about the symptoms I'm going through. I set an appointment with him tomorrow and I will DEMAND to see a Neuro. I'm so sick and tired of this waiting in limbo. How much more evidence do they need? At least give me evoked potential and eeg tests something. OMG, I'm so very frustrated. Please any help or advice would be appreciated.

Marcie47 02/07/2016

Bon, good luck! I definitely think you should insist on having the standard and then the dye so they have comparative (same machine, hopefully the same size sections) if you have another one and go to a specialist. I have issues with the left side my face and my left arm regularly. It seems to be worse when I'm stressed. I don't know that the spinal fluid test is an absolute necessity in diagnosis, but they like to use it. For me, it was no worse than having an epidural when I had both my kids. You just have to remember to take it easy after they do it or you can get crazy headaches from what I've heard. Regardless, I don't trust doctors in general and I've had to become my own advocate. If I don't agree, I tell them. Either they work with me or I move on.

Bon67 02/07/2016

Thanks Marcie, I have never had an epidural or kids, so I don't know how it would feel, but it scares me to death. I don't know why they cant knock you out first for chickens like me. lol I'm calling my Doctor and asking to send my back for another MRI with contrast. Thanks for all your help. I will keep you posted. ((hugs))

basketballmom23 02/08/2016

Bon, I had my spinal fluid tested and have no bands, however the neurologist said some people with MS don't have them (like 10% or so). However, I believe if you do it is a more difinitive diagnosis. When you get tested for Lyme, make sure they test you for the Western Blot Lyme. It is not the "standard" Lyme test. It is much more sensitive.

Good luck.

Bon67 02/08/2016

Thanks Basketbal, I will do that.

ezone 02/21/2016

I was dx with MS over 17 years ago. My MRIs have hardly changed in that time. But my MS has progressed. So the MRIs do not tell the whole story.

My neurologist who is now retired and was great, once told me that some people with lots of lesions on their MRI may have few symptoms and others with no lesions on their MRI may have a really bad case of MS. So MRIs are not the whole story.

Best of luck to you in finding answers. MS is a very hard to diagnose until you have classic MRIs or other symptoms but a lot of your symptoms sound exactly like MS to me.

My MRIs were text book case of MS. So I didn't need evoked potential or the spinal tap. I had optic neuritis 16 years before but MS was dx then. I went 16 years without symptoms and then it was dx from my MRIs. But best of luck to you. Hope you can get a dx because being on a therapy drug can be very helpful.

ezone 02/21/2016

BTW, don't lose it. And BTW, I made a typo in my last post. I meant to say it wasn't dx when I had optic neuritis.

Best of luck. Keep looking for a good neurologist and see a MS specialist. That makes a BIG difference in your diagnosis!

Bon67 02/21/2016

Thanks Ezone, my appointment with the MS specialist is on March 3rd.

ezone 02/24/2016

Great you are seeing a MS specialist. Hope it works well.

I went to a non MS specialist neurologist and she wanted me to get a Lyme test and a evoked potential test and I didn't get either. I went to a MS specialist and was diagnosed very quickly. They also wanted to put me on a MS therapy drug soon. I waited a year because I wanted to go natural but it didn't prove to go so well. In that year, I went out on disability so I strongly recommend getting on one of the many drugs out now. There were only 2 drugs when I got dx. Best of luck and will be thinking of you.

alitax86 02/24/2016

I can empathize. I already have my diagonosis; have had it for 30 years. Yet when I relocated, saw a new neuro, he thought he should test for other problems. Then he contradicted himself when he said that he thought it was so and so disease because with MS, you have lesions on the brain....not just the spine. I asked what was he talking about! I have lesions on my cerebellum. Did he just miss that part? So sorry you are going through this. Have you had a lumbar puncture?

Bon67 02/25/2016

No, haven't had a lumbar puncture yet, my appointment is on the 3rd with the MS specialist. I did have my Lyme test come back negative though.

angelabaker 03/05/2016

Sounds like you need a new GP because everything that you have described leads me to believe you definitely have ms. Im not a doctor I was an RN until my diagnosis. Hang in there, ms is hard to diagnose but I think all of the symptoms that you have discribed leads to an ms diagnosis hang in there bon....peace

Bon67 03/15/2016

Thanks Angela, it ended up bot being MS, but I did test positive for two Lupus tests. One ANA was positive and positive for Anti-Chromatin AB, which indicates Lupus Nephritis. Scary.

mikeb86 03/20/2016

Been through the ringer for 2 years. Had tons of mris and 2 lps. But only showed cfs ocbands and wbc and proteins. Went to a ms neuro and he diagnosed me with ppms with micro lesions that are unseen on the mri. Going to the riggt neuro makes the difference i went to 4 different ones. They thouggt it was in my head lol. Hope this helps

mikeb86 03/20/2016

And only 90% of diagnosed ms patients have olingoclonal bands. So just cause you dont have them doesnt mean its not ms

Join the Conversation