Follow-Up Visit...Still no answers

[KittyLover1971]

Evoked potential tests came back normal...so did spinal MRI. They are saying 50% chance MS. Doing another head MRI but with contrast T2 weighted maybe T1 also and lumbar puncture. Both doing middle of May. So no answers til mid June. Frustrating!

[KittyLover1971]

Sound familiar to anyone?

[cheshcat]

Sounds familiar to me! But I am also undiagnosed. My neurologist also said she's 50/50 on MS. I am doing a nerve conduction test on my right leg in a few weeks. Then I talk to her again. I'm hoping to get another set of MRIs too but my last ones were May 2017 and she wanted to wait at least a year and she really doesn't want to talk about it until the nerve conduction study. So I am right there with you ❤️

[KittyLover1971 in reply to cheshcat]

How was your spinal MRI?

[cheshcat in reply to KittyLover1971]

I only have lesions on my brain. My last MRI said it could be MS with clinical diagnosis. But my neurologist said she feels it wasn't MS (lesions are in the wrong place). Then I was diagnosed last summer with RA and I thought that the RA had caused all my problems. Then I had a neurological flare starting in January. So back up the neurologist (literally up, she's 2 hours north of me). She said she feels 50/50 on it now and wants to do more testing and so testing I have been doing. My rheumatologist said that my RA is not causing my neurological problems. So I guess more waiting and more testing. I suppose I will just keep on keeping on. It's a hard place to be but I guess I'm resigned at this point. I had a urgent care doctor joke "this would be easier if they figured out a diagnosis" why thank you doctor, I hadn't thought about that lol. He was trying to be funny, I liked him. That was a really long explanation of your question lol

[RoseySawyer in reply to cheshcat]

Has your Doctor tried the new blood work test that can determine MS or not?

[cheshcat in reply to RoseySawyer]

RoseySawyer There's new blood work?? Having something more to go on would be so nice for those lingering out there in limbo land.

[RoseySawyer in reply to cheshcat]

That's what I read on the MSAA site.

[cheshcat in reply to RoseySawyer]

I will ask after my newest nerve conduction study! Thank you Rose!

[RoseySawyer in reply to cheshcat]

You're so Welcome 😊

[KittyLover1971]

Well, thank you...I know I'm not the only one in the same boat. Have you had any sensory symptoms like warm and cool spots that pop up and go away? Tingling in hands or worsening of symptoms when you're sick or have a fever?

[cheshcat in reply to KittyLover1971]

I have several spots that never really change/changed. There's a cold/burning spot on my left arm that came with my first flare about a year and a half ago. That comes and goes randomly. It will stay for days and be super hard to ignore. I have a numb spot in the middle of my back, that comes and goes, its not so bad because it's numb not cold/burning. When I got my flare, both came back to stay for awhile. I have a new numbness/cold/burning on my right foot. That one sucks and I started gabapentin finally because I couldn't take it. It is almost always cold/burning on my toes but creeps up to my shin. Right before I went to the neurologist my right foot was weak and I fell. It mostly stays in my toes but can creep up to my ankle randomly. Today it snaked up to past my ankle. I do get something weird, that I have no idea what it's from, but I'll get tingly hands or feet if I sit or hold my hand in certain positions. I'm not even going to try and figure that out. It's like they fell asleep but it goes away quickly, so I'm not even going to mention it to the neurologist.

If I'm sick or a fever, all bets are off! It's awful awful. I get low grade fevers sometimes because of my RA and it forces me to remember to rest more.

[greaterexp in reply to cheshcat]

I do hope you don't withhold any symptoms from your doctors. It may be unrelated, but then again, it might not. I also may be treatable, e.g. carpal tunnel.

[jimeka]

Hi, I know from experience that a fever makes your ms worse. I ended up being rushed to hospital on my birthday because no one understood ms and fevers. The two ambulance drivers were googling ms to see if fevers affected it. I couldn’t walk without assistance, my whole body was weak, it was not nice. I am sorry that it takes so long to be dx in the USA , there are several of you on this forum waiting dor a dx. Keep us posted as to what your neurologist says. Blessings Jimeka 🦋 🍫

[bxrmom in reply to jimeka]

I think it depends on a lot who your doctor is a lot of the times as well what your symptoms are Some doctors don't know what they are doing, don't know much about MS in general or just don't want to make the MS dx for some reason. I'm sorry that some of you are in limbo land and can hopefully get answers sooner than later.

Jessie

[SueAB]

KittyLover1971, I know the feeling. I am told my MS is very mild - although it sure doesn't seem mild to me. After living with MS for 30 years, I still do not show any lesions on my MRI's. I truly believe that doctors are reluctant to stick this DX on you because of all the fallout, such as life insurance rates, etc.

[Doubled51]

I guess I’m one of the lucky ones. I was dx immediately in the hospital one my initial visit. Full MRIs and spinal tap and dx. 5 days of steroids and I was walking and had use of my arms back and on my way home. Wasn’t good being dx ms but at least there was no waiting period. Got in to neuro the next week and started dmt within a month or so. Only one mri with 6 new lesions in June and the rest have been clear so I’m blessed to have been dx quickly.

Donnie

[grector71]

Please remember that, in the final analysis, any diagnosis is made solely by you and your doctor. Wishing you the best. (I'm new here but definitely not new to MS. lol)

[Hidden]

Hi! So I was dx with MS fairly quick. Within 1 month I'd say. There is a blood test that my neurologist ordered for me to see if I had MS and did the same test on my CSF. It's called oligoclonal bands. He ordered that test on both the blood sample & CSF and compared the results. That immunoglobulin protein was found in my CSF but not my blood which is abnormal. It seems like one has to go through a lot of tests to get a dx but it's worth doing it and comparing the results and putting all the puzzle pieces together to come up with an answer. You can try that out if you haven't. Also, are you going to your primary care provider or neurologist?