Questions and Concerns

[Finestitcher]

I'm not looking for medical advice, just peer-to-peer information. I did not fill out a profile, as I may not be staying. We will see.

I am trying to decide whether what is happening is due to cervical myelopathy (C3-C6) or other, which it may be. This may be long, but it is best to have all the facts.

First, I understand that there is such a thing as late onset MS; after 50.

Issues I have had or am having. For several years my left ankle does not want to hold me up and collapses. Over this past summer I went into PT due to this. May have helped for a while, but it was right back again.

I have had issues with not being able to use my arms for very long. This was very telling Christmas Day. I was putting beef on pristeni. I had to stop 15 mins into the job. My arms were like lead, they just would move anymore. This has been a problem for a while. I have been stitching for over 45 years. It is NOT something I want to ever have stop doing for any reason, but for a good while now my arms don't want to do it, they get very fatigue and heavy and achy and I have to stop. I also have had problems with my feet turning purple...years.

Now, having said all of that, I was dxd with PD in 1994, BUT I have questioned this dx for at least 10 years. Why? Because after 23 years I should be very disabled, having had a DBS, etc. I DO walk slowly, very slowly....like seeing frustration on drivers faces when I have to walk in front of them at the grocery. My legs feel like my arms, lead weights. I have to find a seat many times, despite my cane.

So, I do want to say something to a doc about all of this, but I don't want to be shutdown. I AM going to revisit the neurologist I have seen in only once since moving here this past February. I want her to re-dx me...PD, yes or no. I have symptoms, but not the progression, and there isn't much that I don't know about PD. Over the past 10 years I have distanced myself from the PD community because of my lack of progressing symptoms. I was a hard working advocate for clinical trials for more than 10 years. I still participate, but very little. Education and research info only.

Also,
LADA T-1 diabetes, insulin four times a day...A1c 6.2
Post 1994 auto accident issues with my spine
arthritis all over the place

Should late on-set MS be something I should possibly consider?

Thanks, Carolyn

[Finestitcher]

I am a real person with real concerns. I did hope that someone on the board would help me with some perspective or advise. I will wait until March 30th when I can see the neurologist...see what she says. I am finally ready to challenge my 23-year old PD diagnosis, despite the fact that I had experimental brain surgery in 2009; a failed trial. I have felt in limbo for years now. It is tme for me to challenge.

Im just tired of being grossly fatigued each and every day, of feeling like I carry around lead weights, and especially the effect this is having on my beloved needlework...I am beyond just cross stitch, hence the name.

Thanks, I will check this thread again in a couple of day.

Carolyn

[Mamabug]

Welcome, Finestitcher

Just wanted to welcome you to the boards. I noticed your first post, yesterday, but, I just didn't have any medical knowledge (about late onset MS, or about any of your other diagnoses) or even experience as a peer that is similar to your experiences or symptoms to be able to respond to your questions and concerns.

Maybe someone will be along who does.

Thanks for sharing the reason for your name. Cross-stitching reminds me of several people who are dear to me and have made cross-stitching gifts for me.

[JerryD]

Welcome to the boards. I read your post and, even though I would like to offer my advice, I have nothing to offer. I will say that you need to consult with a neurologist at a teaching hospital or the head of the neurology department. Good luck

[Finestitcher]

Thank you both.

I am so frustrated that I have been scouring then Internet and I have to say the the tingling in my feet and the pain in my legs in the evening have a more direct correlation to Gillian-Barre Syndrome. I am so tired during the day I just want to sleep, but I am not a good daytime sleeper, so by 8pm I feel very exhausted.

So, I will start with my Internist.

[dawlfin]

I am a real person with real concerns. I did hope that someone on the board would help me with some perspective or advise. I will wait until March 30th when I can see the neurologist...see what she says. I am finally ready to challenge my 23-year old PD diagnosis, despite the fact that I had experimental brain surgery in 2009; a failed trial. I have felt in limbo for years now. It is tme for me to challenge.

Im just tired of being grossly fatigued each and every day, of feeling like I carry around lead weights, and especially the effect this is having on my beloved needlework...I am beyond just cross stitch, hence the name.

Thanks, I will check this thread again in a couple of day.

Carolyn

Have you been tested for myasthenia gravis?

What were the symptoms you told the doctor who diagnosed the PD?

MS usually seems to affect one side of the body at a given time (left, right) depending on location of a lesion.

Also, did your MRI show enhancing lesions?

Do you have known disc disease ( via the opinion of a radiologist )?

Are you being treated for depression?

Depression can explain some of your symptoms. Doesn't mean you are crazy!

Fatigue, pain, sleep disorders, can be symptoms of depression. I found this out the hard way.

A second opinion is warranted. Don’t tell the new Doc that you have PD, and see what he/she thinks.

Good luck.

[jstinnett]

No such thing as "late-onset" MS?

No such thing as "late-onset" MS? That's definitely not the case. I developed MS in my late 40's, and I doubt that "waiting" to turn 50 would've made a lot of difference, 2 years or so ain't much....

So whoever told you that is not giving you accurate info. Just my .02 cents.

I have also read that only young, extremely attractive women from Norway are apt to get MS....but Richard Pryor, for example, isn't any of those things.

You will get better information by finding a neuro who understands MS and can evaluate your condition(s).

In the meantime, don't assume anything, there are a few things that mimic MS. MS symptoms are as varied as the people who develop it. We are all different in that respect.

Good luck, I hope you have something that isn't MS and can be cured.

[mjan]

A warm hello to you~

I know the struggle of feeling so badly with many symptoms that just don't fit neatly into any ONE diagnosis.
I got the runaround for decades. Sent to MS neuro who followed me for 4 years, saying he never rules out MS, then did. I had to see a new set of doctors after my insurance changed and I had to leave his practice.

I accept that I do not have MS. But now this new set of doctors are finally able to put the pieces o f all my issues together. I got a couple of diagnoses AND finally the right lesions, the right shape=MS! I was 61!!

Now I do not have a progressive case, but all my disorders play off each other. Just so you know, not everything will fit into ONE diagnosis. You may have other things going on too.

Start with your neuro, and see what they can rule IN or out. Hopefully you have a good primary doc who will keep ahead of all this and guide you to any other specialists you may need.

So you may or may not have been diagnosed correctly. I could not say. BUT I do identify with your frustration. glad you found us here!

Sending you hope and gentle hugs,
Jan

[pennstater]

I can understand your frustration. And a half hanks for all your advocacy for PD.

You have lot of medical history with some overlapping shared symptoms.

MS could be a possibility, but it may not either. Push for explanations, one way or another. Be your own best advocate, question everything you need to. I would assume you are followed regularly for your diabetes and have regular bloodwork. With Parkinson's and the cervical myelopathy, do you get regular brain and cervical MRIs?

Good luck.