Do you live in South Carolina?

[Maytay]

Hey,

I was looking for someone to compare notes, suggestions and experiences with local doctors, support groups, clinics, etc.

I look forward to hearing from you soon!

Thanks,

May

[msgijo]

Maytag i live in the mid east SC. Close to the GA line. Zip code is 29805. Google that and let me know how close you are. I have to let you know that I have never been to a support group, so I cannot help with that.

[Maytay]

Living in SC

Okay, so you live near Aiken? I live near Columbia.
I haven't joined any support groups just because it's hard to get out sometimes. I like this message board though.

Do you see your doctor(s) in Aiken or do you come to Columbia? Just curious, I know a lot of people travel to Columbia just because there are more choices of specialists here. I have stuck with one doctor for the last 6 years since my DX but I just changed b/c it was so hard to get in to see him b/c he is in high demand. I like my new doc. he is actually more personable.

May

[msgijo]

May, yes I live near Aiken.

My neuro now is in Aiken, but I saw a MS neuro in Augusta GA for a while, and while it was helpful when I started seeing her after a while I was not getting anything more from there than from here closer to home. I DO wish that I had seen the MS neuro earlier in my journey.

We spent a LOT of time last year in the Columbia medical system - My husband had a stroke in 2016 caused by an AVM, and the Neurosurgeon at Palmetto Health Richland was one of the few in the US that would attempt to remove it (location - it was very deep). He was left with some major disability and is still trying to come to terms with that.

He saw a neuro opthamologist there that I will definitely go to if/when I have another flare up of ON .
But the neuros that he saw there were NOT MS doctors (mostly neurosurgeons). I am certain that here are some good MS doctors there (I did look once and saw that there was even an MS clinic there). Drawbacks for me are the driving distance (and I-20 is ALWAYS having work done on it), Not being familiar with Columbia and the fact that after 22+ years with MS I have discovered that there really isn't much that can be done for it.

I am on a DMD vacation now, and the only one that I will consider at this time is Ty, but my current neuro (and even the MS specialist that I saw) don't feel that "such a heavy hitter is recommended" for me. I am stable and have had no major flare ups - just slow progressions.
BUT the thought of going to Columbia for Ty infusions really is not practical. My husband can't drive. He runs into trees on the riding lawn mower, so I know he couldn't drive there . While I realize that many people have their infusions and go from there to work I would not be willing to be so far from home for at least my first couple of infusions.

I believe that there a some people on MSW that live upstate who go to Atlanta to see their doctors (IMO going from bad to worse). If I were younger (age and MS wise) I would most likely be looking for the doctor that would work miracles, but for me unless somebody finds the CURE I will be happy with my neuro. He is not a MS specialist but treats a lot of MSers, is experienced and he actually treats me as an entire person NOT an MS patient. He not only listens to my thoughts and concerns he takes the time to explain things to me, and works with other specialists that I have to ensure that not everything is blamed on MS.
Kinda funny - he was actually the neuro I wanted when I was first told that I had MS (before I knew that the were MS specialists) but he was not taking new patients at that time. So I wasted 15 years with a neuro that I didn't like and who didn't do near enough for me .

Good to hear that you have found a doctor that you like. It's the pits when you have to see one that you feel doesn't have the time to be bothered with you.
How long have you been dx'ed? Are you on any DMD at this time?

[Maytay]

Living in SC

We spent a LOT of time last year in the Columbia medical system - My husband had a stroke in 2016 caused by an AVM, and the Neurosurgeon at Palmetto Health Richland was one of the few in the US that would attempt to remove it (location - it was very deep). He was left with some major disability and is still trying to come to terms with that.

He saw a neuro opthamologist there that I will definitely go to if/when I have another flare up of ON .

What are the odds? My best friend also had an AVM removed by a specialist at the same hospital and probably the same neurosurgeon! (2015 @ 50yrs old) She had the AVM all her life and no doctor would touch it! But, it finally ruptured and had emergency surgery and it saved her life. She has made close to a full recovery (miraculously). However, they also found a pseudo tumor that causes her some issues, but it is inoperable and all they can do it watch it and hope that it doesn't cause any serious problems.

I'm sorry your husband was left with disabilities. My friend's recovery was definitely a miracle.

I am 48 and was diagnosed in 2012. I have been on and off Copaxone since. No issues with the drug at all. Sometimes, I just like to take a break from it because I know that all DMD's lower your immune system. I have relapsing remitting and so far, I have no progression or legions. However, I was hospitalized Oct-Nov and in a medically induced coma for some of that time for an unexplained virus and my body was not responding to treatment. I made a full recovery, but the first week of Dec, when I was released, I fell and broke my pelvis in 2 places and fractured 2 vertebrae!

I am fully recovered from the pelvic fractures and the vertebrae are almost healed but are causing disc problems and sciatica, so while I can walk and drive, I still have a lot of pain and numbness in my back that radiates down my right leg and both of my feet are numb and tingling. I am seeing my neurologist tomorrow to see if the numbness and tingling in my feet is my back problem or an MS issue. It's hard to tell! I'm going to get my annual brain MRI and I'm going to ask for a spinal MRI to make sure that I don't have lesions that are causes the problems in my feet. I hope and pray that I am still legion free!! And that this can all be chalked up to my back problems!

I'm glad to hear that your MS is not causing you any major problems and I hope for that in the future too!

Do you work? I was put on disability because I worked on Lake Murray and had a very physically demanding job. I had private long term disability insurance, but they required me to apply for SSDI and now I have that as well. So, I feel very, very fortunate all around concerning my situation. I do miss working, though!

Hope to hear from you soon,

May

[msgijo]

Hi May.

OUCH on your fall! The ongoing problems with that must be the pits. Hope you feel much better soon . And I hope that your MRI shows no lesions .

Glad to hear that your friend came thru an emergency AVM surgery without any disability. I agree that was a miracle! My husband now has worse "MS" symptoms than I do - cognitive problems, loss of balance and trouble finding and speaking words. He lost all right side vision, but a surprising problem is that after the surgery he can't read . This is an intelligent, college educated man who suddenly can't read a kindergarten book. I don't know if not being able to read or not being able to drive is the worse for him.

Yes I am retired on disability also. I worked at SRS. I worked w/o any major problems for 15 years after dx (with disclosure to any/everyone), but ended up with a supervisor that did not want anyone with MS on his crew . I started having fatigue and memory problems (MS related as a direct result of the stress that he had me under).
The site doctor called my supervisor and had him on speaker when I was there on a return to work visit, and the supervisor said point blank that since there were no jobs for me that it would be in my best interest to retire. Otherwise I would lose my job. I had too much time vested to loss it because of an ignorant power hungry you know what . This was in 2006.

I had LTD on my job and they too required me to file for SSDI. As it turned out it was a blessing in disguise to NOT be working. Prior to the AVM my husband was insulin dependant diabetic and has had more low blood sugar episodes than I can count. I have had to go to his job to get him numerous times and have had to call the EMTs to revive him enough times that they recognize him around town, not even talking about all of the times I was able to get his sugar up by myself. There is NO WAY that I could have cared for him and worked too.

ON drove my MS dx, and I started on Avonex. I took it off and on for about 8 years before I just quit it. Since I have a true needle phobia that was not the best med for me but at the time all of the DMDs were injections. Yeah I did well on it, but the stress of the weekly injections was more than I cared to endure. When Gilenya was approved I started it, and took it faithfully for about 5 years. Then I developed too many severe side effects and simply stopped taking it. My neuro would prefer that I be on a DMD but I would prefer to have a QOL that doesn't involve side effects - especially when they make me feel so much worse than I do without the meds.

I just realized that I have been retired for 12 years! It was rough at first not working, but then I got married and that has provided me with plenty of distractions . I also have an almost 7 yo granddaughter that made plans today to spend the night with me next week. I do volunteer work, work the media room at my church once a week and have a regular farm to tend to (fruit trees and veg plots, chickens, barn cats - just had a new kitten show up a week ago - and yard dogs - had a stray puppy show up 3 weeks ago that moved in and he is pure puppy) so I stay too busy now days to miss working.

As somebody else said "It is a good life and I even get paid to do the things that I want to do" (well, as much as I am able to). Considering that I am now 56 years old and that the first symptoms that were attributed to MS showed up 28 years ago I think that I am doing great! Of course it took until 1996 for a dx of MS .

[Maytay]

Living in SC

We really seem to have a lot in common. My soon to be 23 year old daughter is Type 1 diabetic. She has been in DKA more times than I care to think about.

I think it is awesome that you have all those things surrounding you that keep you busy and that you are able to physically enjoy! I love to hear stories of people who can still function well and live a fulfilling life after DX. I see so many stories on here and feel so terrible for people who are more disabled and unable to enjoy things because of it. I am pretty healthy, other than my back!

I am not very familiar with the functionality of this site, would you mind if I get your email address? If not, I understand completely. If so, I don't know how to go about getting it. I have not looked into it yet, but thought you may be able to show me how to faster, if interested.

Either way, I would still like to keep a dialog open with you.

Thanks,

May

[msgijo]

May, Click on my avatar. Then select the about me tab. There SHOULD be an email address there mixed in with info about me. If it didn't take we will have to get an admin to help ...