58 years old with a "possibleMS". Diagnosis

[Mao17]

My story started 2 1/2 years ago burning painful feet - foot doctor dx plantar fasciitis with idiopathic neuropathy. At my worst I had numbness, burning, tingling up to my waist. -painful to even have clothes on. My legs were extremely heavy - my muscles so tight. I would feel shocks in my feet and ankles with movement. Facial numbness- my chin mostly. I changed pcp's and was prescribed cymbalta- it has been a game changer- heaviness and muscle tightness improved- pain improved. 6 months ago I experienced foot drop and balance problems. - new pcp sent me to a new neurologist (my third). Neurologist sent me for all thestandard tests. No Lyme , no cancer, no diabetes,. He sent for an MRI which showed many spots.
"Numerous subcentimeter foci of increased T2 signal identified in the white matter of the centrum semiovale and corona radiata bilaterally. Possible etiologies include microvascular ischemic changes and vasculopathy. The appearance is somewhat atypical for multiple sclerosis."

i had had a spinal tap - it ended up being a tramatic tap - protein slightly elevated but a wash because of red blood cells. Tap came back with 1 band - also negative for Lyme and all all other virus.

I tested positive for for small fiber neuropathy- by skin biopsy.

On neuro exam I have full strength - reflexes are increased - flunked Romberg- I was not able to Remember the 3 words. - he tried 3 times. - I've been saying I have memory problems for a few years - and cognitive problems - reading directions- my penmanship has gone to hell - I can only print - it's the weirdest thing.

so so neuro has said I'm too healthy to have the problems I have. He sent me to an Ms specialist 2 weeks ago - and neuro feels beginning stages of possible Ms- Ms specialist isn't sure I don't exhibit the standard symptoms. Neuro said if Ms specialist agrees I should do a 5 day course of steroids - which I did do -Ms specialist said it could be CIPD Chronic inflammatory demyelination poly neuropathy. Ms specialist and neur are suppose to talk . I have an appointment with Neurologist the first week in February.

Im in limbo- it's okay. At this moment I'm feeling good and I'm not in pain. Coming off the steroids was difficult - my balance was off - I couldn't complete a thought - I tire easily now. So, I wait - is it MS?

[Seasha]

Im in limbo- it's okay. At this moment I'm feeling good and I'm not in pain. Coming off the steroids was difficult - my balance was off - I couldn't complete a thought - I tire easily now. So, I wait - is it MS?

Hi Mao17 and welcome to MSWorld! It's so difficult for us to determine if you have MS or not. I had to look up CIDP as I knew nothing about it. Some of the symptoms are very similar.

It's very difficult to be in limbo - I was for 10 years; misdiagnosed many times and finally got the news of probable MS when I was 50 yrs old and had Optic Neuritis. However, we all present differently so please don't take my story as any indication.

I found a CIPD support group forum that you may also want to join in and ask questions - GBS/CIPD International. https://www.gbs-cidp.org/

I hope your Feb appt with neuro goes well and you get some answers.
Take care!

[jreagan70]

Hi Mao17:

Welcome! Because your presentation isn't typical for MS, my best recommendation is for you to get yet another opinion from a second MS specialist, no matter what the diagnosis from the first MS specialist is. It's in your best interest to get an opinion from a neurologist at a clinic that has experience with cases that aren't typical. It's worthwhile to travel some distance to get another opinion from that kind of expert.

You can search a couple of sites for a clinic in your area.

1. The National Multiple Sclerosis Society has a referral page: http://www.nationalmssociety.org/Tre...ers-in-MS-Care. Check Centers for Comprehensive MS and Neurological Care, and enter your zip code and distance you're willing to travel.
2. The Consortium of MS Centers (http://www.mscare.org/) also has a referral function. From the menu on the left side of the home page, click Directories, then click MS Centers. On the next page, select United States and your state to get a list of MS Centers that meet the standards of the Consortium of MS Centers.

In addition, it's a good idea to get another opinion from a specialist in CIDP. MS and CIDP are life-long conditions, and it's critical to get off the the right start with the most thorough, skilled diagnosis and best medical care you can get.

[Mao17]

Thank you

I plan plan on having a long discussion with my current neurologist. I trust him. I'm grateful these websites exist!

Hi Mao17:

Welcome! Because your presentation isn't typical for MS, my best recommendation is for you to get yet another opinion from a second MS specialist, no matter what the diagnosis from the first MS specialist is. It's in your best interest to get an opinion from a neurologist at a clinic that has experience with cases that aren't typical. It's worthwhile to travel some distance to get another opinion from that kind of expert.

You can search a couple of sites for a clinic in your area.

1. The National Multiple Sclerosis Society has a referral page: http://www.nationalmssociety.org/Tre...ers-in-MS-Care. Check Centers for Comprehensive MS and Neurological Care, and enter your zip code and distance you're willing to travel.
2. The Consortium of MS Centers (http://www.mscare.org/) also has a referral function. From the menu on the left side of the home page, click Directories, then click MS Centers. On the next page, select United States and your state to get a list of MS Centers that meet the standards of the Consortium of MS Centers.

In addition, it's a good idea to get another opinion from a specialist in CIDP. MS and CIDP are life-long conditions, and it's critical to get off the the right start with the most thorough, skilled diagnosis and best medical care you can get.

[Mao17]

CIDP ruled out

I just finished up my follow up with a Neuropathy neurologist- I do have small fiber Neuropathy with large nerve involvement - bad news is after a complete work up - it's idiopathic. It not CIDP. I'm waiting on my results for a spinal tap I had over a week ago. Good news there - this time there was no blood in the spinal fluid. Hopefully I'll have the results in a couple of weeks. Neurologist says if it comes back same or increased O bands - back to the MS specialist . This all started 3 years ago - I never had any thing happen that would suspect MS. One hurdle at a time! I appreciate I have support from my family . Is 58 too old to be diagnosed with ms.

[Carolinemf]

Hi ,
I don't think 58 would be considered old for diagnosis if it does turn out to be ms.
There is a difference between diagnosis and onset.
With the 'spots' you mentioned previously that may indicate that you have been having symptoms for quite a while and that they might not have been serious enough for you to worry about.
It may mean that things are just recently becoming more obvious.
All the best with your test results.
Caroline.

[loopey]

Not too old

I was dx at 65 years old but believe I have had MS for at least 10 years before that. Please keep us posted. I hope you are OK.