I'm new-any support is needed & appreciated!

[gigi1180]

Hello everyone...I'm so happy & thankful for message boards like this. Sorry this is long, but it's my 1st post:

After 2.5 years of dealing with a big change in my life, I have come to the conclusion that I am in limbo land of possible ms diagnosis. If I really think about it now, I've probably had symptoms from way before, but they were so random that I just let them go. For me it started with the worst headache of my life that was constant for 3 months, neurologist diagnosis of hemicrania continua. Along the way I was tested for Lyme, Lupus, Myasthenia Gravis (sure I spelled that wrong), diabetes and all was "normal". Normal brain MRI.

Started the roller coaster of meds. Through out, I experienced other symptoms like numbness in right arm, ptosis of right eyelid, tingling in upper back and arm/hand, burning/pain sensation on head & face. Oh yea...I also had developed anxiety...I chopped it up to just being freaked out about the severe headaches. Then there was an issue with my right eye, sent to neuro-opthalmologist with field test and found optic nerve edema. I didn't feel this was just because of headache. Got LP done which was normal.

I should be happy right? I don't feel normal. I would get this excruciating pain around my torso that was gripping, lasted on & off for 3 days...my GP couldn't figure it out & neuro said possibly just a neuropathic pain?! Went to GP to have follow up of bloodwork done as Vit D was low & slightly anemic, that was 1st time any mention of MS as I told her of other issues.

Went to another neuro for 2nd opinion of all symptoms. I voiced my concern of MS, he said "I really don't think you have it." But he's been a great neuro, testing, following up and he explains things. Since started going with him, so far I have several different diagnosis: Hemicrania continua, Migraine w/o auru, opthalmic migraine, carpal tunnel, vertigo, intentional tremor & I'm sure I'm leaving something out.

I was doing real good for awhile, slight headache very randomly. Now it's been a couple months with stronger, longer & new symptoms. My torso gripping pain is back, not so severe though, just real bothersome. I get burning/stabbing sensation headaches, my hands & legs feel tingly, arms feel heavy at times, fatigue has gotten worse some days, at times I just feel slow-mentally & physically, my thigh muscles feel tight a few hours.

Then recent neuro visit, he asked me if I feel anything when I look down. I said "Well other than that sharp tingling lately if I look a certain way I get a jolt of pain for a second." He asked me what kind of sharp tingling...me assuming that it's normal, never thought to ask anyone else "does your back tingle or give that electric shock feeling when you look down?"

I think that's the moment that my neuro said "we need to do further testing as it might be a possibility of ms." So went to another brain MRI w/ contrast & all normal. Now just waiting to get cervical/thoracic mri & EPT test..wait, isn't that pregnancy test? It's the evoked potential testing thing.

So this week has been interesting for me, dealing with all this & getting random stabbing pain on toes, feel like tremors throughout my back, arms & legs, my leg muscles completely tightened up on me last night to where I could barely walk! I had to rest for a bit & they feel better but just a bit sore and now I'm just wondering...Could I have MS?!

I'm at a point where if I'm told officially that I have MS, I might cry just from joy of knowing I'm not crazy & that something IS wrong. Then the little fear of the unknown creeps in, but I try to push that as far away as possible. In the meantime, I'm just going to push & bug to get a diagnosis (not that I want something to be there, but I know my body is telling me something's wrong).

So I'm in the "unknown" and waiting stage...any advise? Opinions? words of comfort? I have a very supportive hubby, loving yet dramatic parents...but they just aren't in my body & don't or can't understand I've been at new job for about 6 months & trying to figure out how to handle that in case I feel to bad to come in. I guess I just try to handle it day by day.
Best of luck to everyone out there!!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Pipes123]

Welcome. I hope you don't have ms. If you do, this is a great place to get support and learn all about people's experience with ms.

It sounds like you're on the right track to find out whether ms is the problem. Hang in there and be good to yourself.

[hunterd]

WELCOME TO MSWORLD! It is great to have you here, but I am sorry you have to be. Many of your symptoms sound like MS, but there are many different diseases that mimic MS. Sometimes unfortunately all you can do is wait (and pray for an answer).

Many of the members here are quick to offer comfort and advice. Ask any questions that you may have. Take a look around and get familiar with our website. You may also wish to check out the chat schedule. They even have one for people that are waiting to be diagnosed. It is on Wednesday evenings from 8 PM until 9 PM Eastern standard Time, and it is called the "patiently waiting" chat.

[Mamabug]

Being in limbo is hard. Hope you get a dx soon. MS, or, otherwise. We have a forum here for Related Disorders, so, please come back often, while you are in limbo, or if you are dx with something related.

[gigi1180]

Thank you for all the concerns & kind words. I'm dealing with gripping torso pain this morning & over the weekend...I was just a mess. It's so depressing & upsetting having all these things going on. Today I told myself to just keep moving forward with all you got until you fall again, then pick yourself back up and keep going.

[gigi1180]

Is this a "relapse"

So since Mid December I was doing pretty great actually...then 4 days ago I started by feeling a slight vertigo while lying down, then head/jaw/eye pain. That went away, but my torso gripping pain kept me home yesterday as it was making my breathing a bit hard & painful, plus I was so fatigued. My legs and arms get slight twitches on & off throughout the day, but everyday for last 4 days. And today, my upper thighs just hurt. It feels like tightening of muscle or some type of burning sensation. I went for cervical MRI last week as my brain MRI showed "normal". Just waiting to see if I get another "normal" call....I'm just feeling hopeless today. Like...this is my life-no diagnosis, but I'm not nuts-I swear!

[Larry K]

Just hang in there!!!! I was in limbo for quite a while without knowing it. I had problems for over a decade without putting the two together. When I starting to get some really dizzy spells with loss of fine motor skills that opened pandoras box for the doctors.
After seeing the neuro and many of tests the doctor called me in for my diagnosis. I sat there with a smile on my face when he told me and asking me I have 24 hours to get a second opinion before they started treatment. I opted out of the second opinion and carried on with my
life. Just hang in there and God only gives us what we can handle. ( We must have very broad shoulders)

[cdsnov65]

That sharp, shooting lightning bolt sensation you get when you bend your neck is called "Lhermitte Sign." That is from lesions in the spinal chord, typically. Did they also MRI the spine? The CNS includes the brain and spine. If possible, go to a machine that has the highest Tesla rating you can find. It's faster, but has greater contrast.

Chuck

[Jennagain]

Limbo can be a long, hard road for some. I hope this is not the case for you and I hope you receive not just any diagnosis, but one with a hopeful prognosis.

[gigi1180]

Yes I got a cervical MRI 5 days ago & waiting on those results...it was 1.5 Tesla rating. Will let y'all know what they say.

[AnneLouise]

I will tell you straight up that it sounds like ms because I can identify with much of what you say. Especially the jolt when looking down. I was dx'd at 44. I could/should have been dx'd at 20. I feel my first symptom appeared at 15. And symptoms, too, were random, not lasting very long to be too alarmed. Or believing they were "fixed" by a chiropractor or massage therapist. Hindsight is definitely 20/20.

It should be a great relief to know what is wrong with your body and you will know what you have to deal with. Talk to the HR at work (and only the HR! nobody else needs to know!). You may have the option to use a family/medical leave so you don't lose your new job due to feeling unwell or tests,etc.

I read what we really fear is that which is known. We know what the future holds, (or at least have a good idea) and that's what we fear. Try to focus on the unknown potential of today. And be grateful for what you're able to do today.

[gigi1180]

Still in limbo........

So my cervical MRI was unremarkable & no lesions found. I have my follow up on Friday w/ neuro, got started on Gabapentin this week to see if helps. I've actually had a good couple weeks now.
And it was weird b/c I tend to have very vivid dreams, last night I had one that woke me up & I realized that I hadn't had one in about 2 weeks. Plus...my sleeping pattern has COMPLETELY changed in last 4 days. I wake up in middle of night around 2-3am & either can't go back to sleep or stay awake for an hour or more. Frustrating.
Anyway...my neuro tells me that a normal MRI doesn't mean much, just no evidence so we'll see what happens.

[msgijo]

hi gigi 1180.

I had intended to post to you earlier but well ... you know about the forgetting stuff i guess.

So yesterday I was skimming the board and saw "gigi" and stopped. I didn't remember making a post here???? So of course I had to look.
Then I remembered / realized that my screen name isn't gigi - that is just a nickname of mine

Don't you just hate the 'unremarkable' on MRI's?
But hang it there. Sounds like you are on the right path, and with a good attitude too.

[joewiseman]

Related stuff

I can identify with the dx difficulty. It took the better part of 2 years for me to get to this diagnosis - I have non-ideopathic RBD triggered by MS lesions on my brain. The medication I am taking treats the RBD and mostly keeps me from exploding out of the bed in my sleep. There are other symptoms - numbness and tingling, loss of taste and smell, anxiety, stabbing neck paind from time to time. The RBD and MS are complicated by arthritis and drug side effects as well as aging - 63 now. Every day is an adventure as I try to balance the changes in my life and stay positive.

[Mamabug]

Might be a long wait, Gig, until you have answers. Glad that your neuro is continuing to look.