I am new here. Just posted thread about PPMS. I am 52 years old. Started with abnormal sensory sensations over a year ago. Has anyone started this way. Pin Prick feelings head to toe, now more concentrated on right side. Buzzing in feet added to list and electrical wormey feelings even after 90 mg. of Gabapentin.

I did have an MRI, EMG, and Spinal Tap last August, neuro said all ok. Can MS hide from these tests in early stages of older onset MS?

I am getting more afraid by the minute.

Anyone older onset?

welcome to the forum. I am sorry you had the need to find us, but happy we can be here.

I started out in my late 30s with buzzy feet, burning feet, a dropped left foot, migraines, and an odd assortment of other issues. The MRI/Ct scan was negative but my CRP (c reactive protien) was 10, so we knew there was inflammation somewhere. I was given the migraine syndrome lable, with an anxiety disorder and released. Thought I was going crazy. Today my leg works, tomorrow its so heavy, spastic and buzzy I cant use it. Years pass, several episodes go with it, but the MDs all point out that in writing I have a normal MRI, and I am just overly anxious.

I moved to New Hampshire after I retired early, and got a new MD. The new guy saw me walking, and said he knew I had an issue. He ordered a new MRI, and new tests. He asked for the old MRI to be sent to him. Turns out the old MRI showed lesions, but no one commented on them. Since it was less than 10 it was marked as "migraine lesions" I was packed off to the MS center who without blinking told me I have had MS for years, and while not everyone shows up with an MRI filled with lesions, my case is clear, and I have had MS for a long time.

I was also told that not all MRI machines pick up all lesions. The open MRI is not as strong as the closed machines and will miss things.

One of the MS MDs I was sent to dismissed me and said I was too old to have MS! The MS center said NO ONE is too old for MS, esp if they have gone undx for years/decades.

I hope you find the answers you seek. Have you gone to an MS center?

I was 46 when DXed with MS, which later after it was found to be PPMS as DMDs don''t help PPMS (MS Neurologists often do not diagnose PPMS until laterfor a variety of reasons, one being Health Insurance will not allow trying DMDs as nothing seems to help PPMS and drugs are costly but they want patients to try them).

I have never had tingling, I walked funny (MIL thought I drank I found out) and was dizzy. I had Urine Release problems but for my age and after a twin birth seemed "normal. Looking back, I see things starting 10 years before diagnose but nothing to really affect my life. Dxed at 46, not so bad until I was 48 or so, in a chair after Canadian crutches and walker at 53.

My physical seems real effected, cognitive while impacted (or is it age?) not so bad. Everyone is so different in their MS (When, how and amount) it's hard to compare to anyone else. I will be 55 end of this year.

Not all MRI's pick up lesions. A 1.5Tesla machine isnt as powerful as a 3.0Tesla.

If you have neurological signs that can be detected on a physical examination, you probably have an MS lesion somewhere. If your neuro is good at what they do, they can usually tell you where your lesion is based on where/what your symptoms are. Some neuros however, really want to be able to confirm it with an MRI.

My neuro told me that I probably have a lesion somewhere on or near my thalamus, told me that my symptoms (right side numbness, from nearly head to toe) was a symptom of a lesion on the left side of my brain around the thalamus. My neuro is probably in his mid-80s, so he's been doing what he's doing for quite awhile. (I think he's got a diploma in his office that's dated 1948) If you have a younger neuro, he/she might have been taught to back up their "theories" with "data" (MRI scans and blood tests and LPs)

My neuro diagnosed me based mostly on symptoms. I had a couple of MRI's that showed lesions in my spine (T-12 and C-4). I'd had an MRI earlier that year that showed a few white dots in my brain, but they said that was due to my history of migraines. (the dots were in areas that werent "typical" for MS)

Have you had an MRI of your spine yet? Lesions can be found anywhere that there's brain matter. (brain, spine and optic nerve)

Hi invisible,
Welcome! Nice to meet you.

MS can come and go and some people never know they have it. It has been shown that people in their late 90's have an autopsy, upon natural death, and they see plenty of MS lesions in the brain, but they never had any real symptoms to bother them.

Others can have one or two and have many problems. Lesions can be very tiny and not show up for some time. Get an MRI of the brain and spine in a closed machine, with GAD dye (dye for the brain one). If you have kidney disease you shouldn't use GAD dye. It exits the kidneys (the dye).

Then if they think you need more testing get a LP or visual testing. VEP's it's called.

It takes years for some people to get a dx. Other people in days or weeks. You don't want a wrong DX.
Good luck to you.

That is a very low dose of Gabapentin (Neurontin) for sensory symptoms. I thought the dose starts a 100 mg. in a tablet. I used to be on 2700 to 3600 mgs daily in the past.

Thank you all for your replies. My MRI saw 2 small hyper Foci, did not mention the word legion. Are they the same thing?
I did have a LP, all within normal range, can this appear normal in MS that has not progressed enough yet. I have so many sensory symptoms with no answers, I feel in my heart it has to be MS. I prickle every few seconds somewhere around the clock, head to toe. Can't help but feel Docs are missing something. Also wondered how long it takes for motor problems to show, is it odd to have sensory for over a year with no motor/walking issues?

Thanks Again.........Sorry for more questions.

Hi Invisable, nice to see you.

Welcome to Neurotalk...You have come to the right place.

I was actually DXed twice with MS, once in 1976 and again in 1993 at age 52, after a long remission. So, I guess you could say I was both, early and late onset.

I don't think there is any difference. Its all MS and how if reacts in your body is what type of MS you have, not necessarily, when you get it...JMHO.

Thanks for joining us and I Hope you like it here.

Hi invisible,
You can have sensory symptoms for years and years before anything shows up on MRI. Some people have negative LP's and still have MS. There are no set rules. We are all different in our presentation of symptoms.

This may be all you get, now, later or ever. It take times to get a dx. Just keep a journal of your symptoms, how long they last, and if anything new happens, then call your Neuro. Like if you get numbness or shocks, etc. There are so many symptoms, some have many, others have very little.

You have to treat your symptoms, that's all you can do right now, and wait..