The symptoms are progressing so quickly?

New diagnosis and before diagnosis
1

Hi all-

I’m new here, and feeling very confused/sad, as I’m sure many of you have been through. Im looking for a little advice from you seasoned vets :wink:

Ive been dealing with what I called “foot neuropathy” for 4-5 months…started at the sole of one foot, then the whole foot, then the other foot. Eventually it became more of a burning sensation. I couldn’t wait to take my shoes off as that offered relief. But recently in the past month, things have progressed and continue to do so quickly. I now have burning sensations all the time, up both feet, shins and quads. My left forearm and hand on occasion as well. I started having nerve pain in my mouth, above a single tooth. (Dentist says I have receding gums, but seems a bit strange to me.) I checked into ER after having had a few days of coordination/balance issues. Walking up/down stairs felt sooo strange…like stepping on foam, or wet wood. I tried running and my legs wouldnt respond…felt heavy, disconnected. I explained in ER I was suspicious of MS. They sent me immediately for an MRI of Brain/cervical/thoracic with and without contrast.

Upon review the brain showed no lesions nor did the spinal cord, but there was a major herniation at c6/c7 juncture. (I should note, I have always had a spine that doesn’t image well…Im an athlete who beat up my body, and have herniated/bulging discs etc… ) SO, they concluded that the stenosis, caused by the disc putting pressure on the spinal cord is the most likely culprit for most of my symptoms. I was still weary as I knew my neck had been bad for a while, but Since the cord compression was so great, they told me I should have surgery within the week to relieve the pressure. I wanted to continue to chase the MS possibility but felt ccompelled to treat another major issue, even if it wasnt causing my symptoms. So long story medium, I had a c6/c7 fusion this past week.

Though only 5 days out, my symptoms have come screaming back, with newer twists. I have more hand tremor, weakness in the hands overall, burning sensations greater than before, random muscle twitches all over my body. And the most worrisome is hypnic/myoclonic jerks that don’t allow me to sleep. The second I cross from wake to sleep state, a certain body part will jerk,twitch etc waking me right up. It’s a hand, a finger, my lips, a swallow, soooo strange. The bottom line is I am now anxious to sleep, for they are constant.

While everyone is telling me to be patient with the surgery, my gut is telling me something else is at the root of this, and I need to chase it down. Heres my dilemma, I have a couple of appointments on the books with MS specialist/neurologists, but not until the middle of January. Im reading more and more literature about acting quickly to preserve as much nerve function as possible.

  1. should I be pulling out all stops to be seen much sooner than 3 weeks out? is that way too much time for a possible progressing disease?

  2. is the type of MRI i had (w/wout contrast, T2) the type they would use for the MS protocol? is there a chance the neuro will want another, or another “type”? Would she most likely prescribe a spinal fluid tap?

  3. if symptoms are changing and progressing so quickly, with no sign of stopping, would it imply that if MS, it could be aggressive and primary?

Thanks so much for you time. Im obviously overwhelmed. Any thoughts/advice is appreciated.

1 Like
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Hi Seamus

I’m sorry that your body has been gatecrashed in this way.

In the grand scheme of things MS related, 3 weeks is NOT a long time to wait.

Most people are diagnosed with RRMS (Relapsing, Remitting).

aggressive MS is not a “type” of MS. The options are RRMS and PPMS (Primary Progressive).

Don’t dwell on this too much because in 3 weeks you will be seen by a specialist and will be able to ask questions and get answers.

Spend the 3 weeks making notes of questions you want to ask.

Good luck

Carole x

1 Like
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Thanks Carol. I appreciate the insight.

I get concerned when I read things that say “dont wait, act immediately” based on preventing as much nerve damage as possible. I also get nervous since my symptoms keep expanding, whereas I read many other’s experiences that seem to just come and go on their own. I’ve had fire feet for 4 months now, and balance issues for 3 weeks. Now the hand tremors are getting in on the act, and sleep disturbances galore. 3 weeks seems like a lot more could happen. Wish I could be seen sooner.

Lastly, what do they do if neither the MRI or spinal tap show anything? Do they often utilize meds as a diagnostic tool?

Thanks,

Seamus

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3 weeks is pretty quick to be seen, although I understand how worrying it can be to deal with symptoms. Could there perhaps be other causes for your painful feet? I know a few years ago I had very painful soles of my feet,but it turned out to be plantar fascitis, which in my case was helped with custom orthotics.