Avatar universal

New here....my story..... thus far

I'm new here, looking for some support for the journey. I have a "probable MS" and official CIS diagnosis. This is long but I just need some support. My husband is wonderful, and caring, but i dont think anyone can really understand how this feels.....unless you experience it?

It started this past summer with a sudden onset of debilitating headaches that seemed to be causing  vertigo, vomiting and some numbness/pins and needles effect and some odd visual disturbances. I also felt completely exhausted and weak from very little exertion. Sometimes I would wake up to my whole body vibrating and could feel it during the days at times too. After a few months of trying to deal with it all with OTC meds I was sent to a neuro in the hopes of getting relief, but soon was being sent for numerous tests because of what he found on my neuro exam.

He found I had L'Hermittes, hyper reflexes and didn't like what he saw when he had me walk barefooted across the room. I also showed some weakness on my right side. He took note of my problem with recurrent UTIs and questioned me about the hows and whys of  a referral  many years earlier after the birth of a child for odd symptoms that ended up getting cancelled because they cleared up before my appt. finally arrived. He ordered that standard blood work as well as tests for Lyme and B12,  which were mostly normal, other than a positive ANA and an elevated test for inflammation. The MRI showed  lesions, some in common areas for MS and some not. An  LP showed 3 o-bands. The neuro said were quite likely looking at MS but he wanted me to follow-up on the ANA test first.

After a couple of failed abortive headache meds, he ordered me tImolol as a preventive and it started to work. The headaches lessened and some of the buzzing I had been dealing with started to go away. I saw a rheumatologist for the elevated ANA who noted my long history of raynaud's  syndrome. She decided to order a round of oral steroids because of the blood test that showed inflammation, while we waited for more blood test results.

I took them for a couple of days, but suddenly my legs felt like they were going to give out on me whenever I stood, so I called  my neuro and he allowed me to discontinue them. Just after this, the buzzing in my one foot that had continued, started to travel upwards, all the way to my knee. The very beginning of November I unexpectedly saw my neuro's partner for my follow-up and he said he felt it was just all side effects of atypical migraines and would continue to lessen now that the headaches were under control. I clicked with his calming/ conservative personality much better and decided to start seeing him instead. We planned for me to just see how things went and return in February.

But soon after this I took a fall down the stairs. Don't know what happened really, could have been my foot/ leg that by this point had become numb from the knee down, or the vertigo or perhaps I just missed the step, as anybody could. I really hurt my hip and needed a few stitches so went to the ER. Thankfully all was OK.

Very shortly after this I  went to bed with my eye really hurting and woke up the next day unable to see out of it. It was very blurry and colors were all very dim. Diagnosed with optic neuritis. Told to get an MRI and see neuro again but since I already had one recently and had another scheduled for next month I decided to wait on it. I was offered 5 days of high doses of IV steroids, but was so afraid after my reaction to the low dose oral ones that I decided even with doctors reassurances that since  I'd be monitored in hospital it would be OK, to just try and ride it out and see how it progressed. At this point I was  diagnosed with CIS by second neuro.

Soon after all this and another fall, this time in our bathroom on our ceramic tile, I mentioned to my GP that I was still being really bothered by the vertigo. He sent me to an ENT who In turn sent me for a VNG and evoked potentials series. I had abnormal results on the visual tracking part of the VNG  and had a few delayed responses on my brainstem auditory one and Optic Neurits was confirmed with the VEP.

ENT says all results point to a central problem for vertigo but he said he felt  that the Optic Neurits and timilol may have effected results of the VNG. Told to go back to neuro to discuss.

So this Monday I called my neuro and though he thinks it's a long shot, he agreed to me stopping the timilol to see if the vertigo and pretty constant brain fog lifts. I am already scheduled to go on the 4th for another MRI, but this time not only  of brain, but of neck and spine and with and without contrast.

So that's where I'm at.  Still have dim vision in one eye, still have this near constant vibrating in both legs and lower back and sometimes arms and head. Still have a different type of pins/ needle feeling in the foot that went numb for a few weeks. Still have trouble with UTIs. Still have a pretty frequent dizzy lightheaded feeling that gets worse when the vertigo happens and occasional headaches that I'm praying won't get worse now that I'm stopping the timilol. Still seem to lose my balance more than is normal. Still get tired too quickly every day, especially when walking far, which leads to limping/ foot dragging.

My husband would prefer I go back to dealing with the first neuro. He felt like he was very thorough, observant and that he immediately knew something was wrong more than just headaches from day one and readily persued it. He also involved my husband eagerly, asking him what  his concerns were, what he was noticing in me etc., which sort of bugged me at the time, as i felt almost picked on. Seems so silly now. I know they were just trying to help me. Honestly in the beginning I really felt the first guy was too aggressive and looking for the zebra instead of the horse when he herd the hoofs, and he seemed a bit arrogant.

But now 6 months later, unfortunately, it looks like he might very well have been right. Yet I still feel like I can talk and be listened to better by neuro two, so I don't know what to do. At this point not sure it matters and  I'm wondering more and more  if I'll ever feel really well again.

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1466984 tn?1310560608
Welcome and so sorry for what you are going through.

I can relate as I am possible MS - limbo - have been seeing neuros for the past three years, and finally found one I really like.

This is a very difficult, tedious, confusing, frustrating and scary journey you are on.  But you are not alone.  There are many here who can relate and offer support as you proceed.  There are no quick and easy answers when it comes to neuro issues as you have seen.

I think as you go through this it's very common to wonder if you are seeing the right docs.  This is not an exact science  - so the docs are sometimes just as baffled as we are.

Trust your instincts for now and see the doc who you feel you have the best rapport with.  If you feel he is downplaying sx as you go along, make sure to bring up your feeling, thoughts on this.  AS long as he is open to listening to you and taking you seriously , that is half the battle.

It's hard to have hope when each day you feel lousy, but hang in there.  And I hope and pray that you will find some definitive answers and be surrounded by good docs who help you find your way.

This site is the best, and you will find great people willing to help.
Take care.
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667078 tn?1316000935
Welcome. If you like Neuro two and he is a MS Specialist stay with him. Not all Neurologists are MS Specialists and if turns out you have MS you need a Neurologist who is up on all the latest MS treatments. I went to a couple of Neurologists who were not MS Specialists and they could not help me really. One was a headache specialist and she really did not know enough about MS. I went to a half dozen Neurologists before I found my current Doctor.

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1831849 tn?1383228392
Hi KA - Sorry you had the need to find us :-)

You have experienced first hand the daunting diagnostic process associated with MS. It always seems there are more questions than answers.

We tend to rely on lab tests and MRI studies to tell us what's going on. We also tend to everlook the significance of the clinical exam. It is perhaps the most important part of the diagnosis.

The symptoms you describe are all fairly common among people with MS. Your first neurologist identified these right away. His clinical diagnosis was then confirmed ny your MRI and LP results. If it looks like a duck, walks like a duck and quacks like a duck...

Also in Neurologist #1's corner is his eagerness to include your husband in the process. This is vital! Your husband sees things that you might not see or discount while talking to your doc. My girlfriend was at every appointment during my diagnostic process. She provided an unvarnished point of view when we met with the doc. It is also very, very important to include them in the process. After all, even though it is happening to your body, it's really happening to both of you. Getting hubby's buy in is huge!

Without knowing I should have been looking for a whole, I spent years addressing the parts. I was unsuccessful. No matter what I tried I could not fix the individual parts. I found a neurologist who told me she was 85% sure I had MS. She said I needed an MS specialist. The MS specialist added the last 15%. There WAS a whole that encompassed all the parts!

Your first neurologist seems to have provided you with the whole. I'd stick with him :-)

Sorry you were looking but glad you found us :-)

Ask lots of question!

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Avatar universal
Thank you all so much. I really believed in the beginning it was just headaches and all would be well, with the right med. That hasn't happened. Kyle you are so right about my dh being involved, and I'm so grateful that he is. I just wasn't ready to admit anything more was wrong at that time, but with time comes acceptance, and I'm very slowly getting there.

Helpful - 0
739070 tn?1338603402
I'm so sorry that you are having all of these difficulties but am glad that you found us!! It's a great place to be. We are open to answer any question and have Health Pages ,located to the right of this column, with lots of factual information on MS.

Your history with headaches and falling is reminescent of my begining symptoms. I was fortunate not to have an ON diagnosis at this point but I do have regular /constant pain pain behind one eye.

I agree with Kyle about Neuro #1. Involving family members who may observe additional symptoms is important and helps provide a good support mechanism. Also, this neuro , per your husband, was observan t, through and knew something was amiss. Even if your rapport is better with  #2 ,if she /he cannot  diagnosis as needed then that makes #1 the better option in my opinion.

Just so you know , many of us have been through multiple neuros in our MS history. It took 5 to get my diagnosis others have said 7 or 9 neuros until they find the perfect fit. As you adjust to this new diagnosis I would opt for the better diagnostician and when you are stable then look for the "perfect " neuro.

Com back with any and all questions no matter how trival they may seem and /or for support because we "get It". We live with the disease. Although no two cases are alike just as no two snowflakes are alike, someone on here has probably experienced what you are inquiring about.

Again welcome to the forum,
Helpful - 0
1831849 tn?1383228392
Cat - Getting there slowly is ok cuz it's a long road we're on :-) it's kinda tough to wrap your mind around the fact that we have something that can't be fixed, yet :-)

Helpful - 0
Avatar universal
I hope you can get some answers soon. The only thing I can really say ia that hopefully your ON keeps getting better. When I first realizex what was going on with my vision the gray spot was almost black and got parse for a little while. It has gotten A LOT better...slowly. if you haven't seen a neuro-opthamologist you might want to consider it. They are thinking that the OCT may eventually end up being one of the first test to consider in diagnosing MS. Plus its much faster than a MRI.
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Avatar universal
Sorry my post went through so many times...ive been having technical difficulties.
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