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Old 05-05-2009, 05:48 PM   #1
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Unhappy New & desperate need of sage advice for Fredericksburg, Virginia Area

Though my story is long I shall do my best to keep it as short as possible, while trying to give some detail. I am new to the boards but am desperate for opinions and advise.

I am 36 F, mother of 5 (2 bio & 3 adopted). And after much time for reflection as I wait what seems effortlessly for help and diagnosis, I have had the opportunity to look back over the past 16 yrs of my medical history and see a bigger picture than what anyone has ever take time to look at. Since 1993 I have had recurrent pain & numbness on my rightside (leg, foot, knee, shoulder, arm, hand, fingers and torso) and migraines. In 1995 during my pregnancy I was hospitalized several times for hypertensia & possible toxemia....both being ruled out during hospitalization...though my skin on arms & legs turned burgundy to purple in color and swelled. In 1997 the pain and numbness in my legs & knees returned and I was diagnosed with Anibursaritis (not certain of spelling) and sent to physical therapy with no relief. In 1999 during my next pregnancy again I had the skin discoloration and was hospitalized for the same suspected toxemia only to be perfectly fine other than the swelling and beautiful purple knee high skin socks (my husband lovingly teased calling them) and gloves from the skin issue, which again subsided after the birth. In 2001 the numbness returned to the rightside this time also in my arm and hand. EMG, MRI & EEG ran but were neg. In 2003 again with the same issue EMG neg but EEG recommend brain MRI that was never done and issue pushed to the side by pcm. That same year I began having a "strangling/choking" sensation in my throat and was diagnosed with Dysphasia but after scopes, artery dopplar tests, mri, swalling function test....there was no reason found for it. It subsided for the most part but I still have the sensation of being strangled that I have learned to cope with. In 2006 I had to have my gallbladder removed after complaining of several abdominal pain....though the pain continued even after the removal. Battery of GI tests run again but no luck in finding why (recently having read an article on "MS Hug" leads me to believe it may have been that). Beginning summer of 2008 the symptoms all began reoccuring the numbness, dysphasia, abdominal stabbing pain, fatigue, migraines worsening, insomnia at times, dizziness (also cannot close my eyes while standing or I fall over), and general aching pain. My pcm adjusted my migrain medicine and began ordering the battery of GI tests again. Shortly after Christmas I noticed my skin on my right foot and leg changing colors again & it was made worse when showering. Within 2 weeks I had foot drop on the right side. My pcm immediately kicked into action ordering xrays & MRI to rule out pinched nerve and EMG. She began to review my history again and saw that the former pcm had tested me twice for MS & said that all signs pointed to it this time too.....The EMG suggests me being fitted for AFO splint, physical therapy & specialized neurology consult, which my pcm was in the process of taking care of.....but then...my issue...My spouse moved us to a different state (now in Virginia) right in the middle of my doctor attempting to get a diagnosis....after a month of trying to get into a new pcm I had my appointment today, taking with me and showing her the EMG & neuro recommendations & documentation from my previous pcm.....after 10 min of me answering why I was there, she looked at me and said, "And exactly what do you want me to do about it"............I am so frustrated at this point and do not know where to turn. I'm in a new state and do not know anyone to ask for a good family physician who will take the time as my old pcm did, especially now with all that is happening to me, to get the help I need to figure out what the heck is happening.

I have lost almost all the use of my right leg and my right arm and hand are quickly fading...my symptoms are progressing rapidly as now my left leg and arm have begun the color change as well & the numbness and tingling started this week in them too. I am in constant agony now with these weather changes and even on the leg that I am completely numb in if you touch me I feel like you have just hit me with a lightening bolt of pain. My eyesight is fading and I cannot see from dusk on now very well. My body has begun these wierd temperature fluctuations, where my hands & feet used to be ice cold...now at times in an instant they turn blood run and are as hot as fire (this fever has spread to my whole right side & ears) and the pain feels like my bones or just my whole body is being lit on fire from the inside out these days.

I'm sorry it is such a long post ...... If anyone can offer a suggestion for my area I would be so very grateful. I know I am not alone in struggling with medical issues, but at the moment my isolation in this new setting makes it seem so.

Rachel

 
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Old 05-05-2009, 07:21 PM   #2
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Re: New & desperate need of sage advise for Fredericksburg, Virginia Area

Hi Rachel. Your story is really sad. Im sorry you are going thru all of what you are dealing with. Please, I used to live in Fredericksburg- there are some great Docs in Both Northern VA and in the Richmond area- get in touch with your local MS society. Tell them you need a referral in your area- they can help you.
What you describe rings of MS in many ways, but it also doesnt...there are quite a few symtoms which just never come up here (and I havent heard of) in relation to MS; however MS is such an individiualized disease, that anything is possible...your best bet is to find an MS specialist. That person can both diagnos or rule out MS...they will also do all the right tests to see what IS going on with you.
Please hang in there- whatever it is, the sooner you start getting tested, the better- and if all else fails, take yourself to the ER and demand some help. NOt the best way, for sure- but if things are really bad, its an option.
I wish you well.
Nikki
__________________
RRMS- dx 05

 
Old 05-05-2009, 07:54 PM   #3
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Re: New & desperate need of sage advise for Fredericksburg, Virginia Area

There is a good representation by both the MS Society and the MS Association in your area. Actually, as you are between DC/Alexandria and Richmond, you should have two areas which can assist you. You might ask your previous doctor for a referral in your immediate area.

You might want to try something abrupt. Try spending a week or two in a powerchair in order to rest your body and soul. I went so bad as to need nearly 6 months of bed rest. I know it is stressful- your move alone, could have pushed you over the top.

While you are waiting for a doctor, you can consider the emergency room, BUT while you are at it, try to tear apart the details of your body. Shower- too hot will cause problems- adjust the temp. Fatigue? Get yourself in a power chair and allow the wheels to get you around- save the energy for things you really enjoy. Household chores? I can mop the house just fine from my chair. I still use my legs, but I have learned to "bank" my energy. If I need to drive the boys to karate, I will forgo one of my two passive exercise bike workouts.

What you need to do is to find your triggers. If you can discover your triggers, you can essentially control much of your progression (it is not 100% perfect). The thing is, you need not let MS control your life. If you do, then the disease has won.

The touching pain, it hurts a relationship because the spouse or family do not understand. Consider trying gloves. When my son touches my arm it is like a knife/shock, it is not fun, BUT it does not last forever.

You have much on your plate right now. If you have a church, consider asking the ladies group or the outreach members for assistance. When my wife had our youngest, she was confined to a wheelchair and bed for 7 months. The church members helped with meals and other small things which took the edge off.

You are mother of 5. Fantastic. The powerchair can help you maintain your energy. My little one is now 10 and he has been dealing with a disabled dad since he was 3 years old. Both my sons know what I can and cannot do. They do many things without asking. I should hope that you are blessed. The roofing contractor for my house has a wife with MS. She fought for years to try to keep up with her kids activities with her MS and severe fatigue. Her husband bought her a power chair and I have never seen such a change in a person.

STRETCH! If you are unable to do any exercise or walk, STRETCH. If you can exercise- STRETCH. Stretching is very important.

In the meanwhile, smile, you are not alone. I will definitely keep you in my prayers.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 05-06-2009, 03:34 AM   #4
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sambo67 HB User
Re: New & desperate need of sage advise for Fredericksburg, Virginia Area

Thank you both for your replies...I will get to work this morning on locating the MS Society nearest me and contacting them. As so many others I have seen posted on here, the not knowing is the worst. I am determined no matter what this is not to go down without a fight, but fighting an invisible unknown assailant at the moment is frustrating. I am very blessed, and have 5 kids (4, 9, 9, 11, 14) that do great job at pitching in to help mom when they know I'm trying so hard but just can't.....though I see the frustration and concern in their eyes not knowing why mom used to be able to do so many things and now she is almost bedridden. I will keep you posted on the progress in my search and thank you both again for your assistance and encouragement.

Rachel

 
Old 05-06-2009, 06:00 AM   #5
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Re: New & desperate need of sage advise for Fredericksburg, Virginia Area

Great news. Stay Positive. It is a blessing to have kids help. There are some information books designed and age appropriate for your children. Your children may be troubled by your bedridden state, but for many kids, knowing that your affliction is not fatal is reassuring and will assure them that you will still be the emotional core of their lives.

Ask for the information about MS for your kids and your husband and family. Once they realize that you are in a fight you can win, the sun will certainly shine a little brighter.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 05-07-2009, 02:47 AM   #6
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Re: New & desperate need of sage advice for Fredericksburg, Virginia Area

Update: Contacted the MS Society in DC yesterday and one of their reps Carla provided me with a the name of a pcm to try. She said they have many specialists in their database however not many are pcm's. She is also sending out a video and books for the kids that will help them to understand what is happening on their levels.

Called the doctor's office I was provided, Dr. Anne Solomon in Winchester, VA. She is a neurologist who is now a practicing family physician and according to the information I was provided she started the MS Clinic in Winchester and has worked with numerous MS patients throughout her career. Her office staff I spoke with were very helpful after explaining all that has happened and they have scheduled me to see her this coming Tuesday. It is a bit of a haul from my home approximately 2 hours one way, but at the moment I will travel to the ends of the world and back if I can get some answers.

Until then I am attempting to conserve what little energy I can muster these past few days praying that the pain and other symptoms will subside, even a tiny bit and continuing to keep my daily journal hoping I can figure out what the triggers are that make things worse, or atleast provide the doctor a better insight as to the things I am experiencing on a daily basis.

 
Old 05-07-2009, 07:06 AM   #7
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Re: New & desperate need of sage advice for Fredericksburg, Virginia Area

That is some terrific news!! You can get through this!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 05-07-2009, 09:18 AM   #8
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Re: New & desperate need of sage advice for Fredericksburg, Virginia Area

HI there! Thats great news. It shouldnt take you 2 hours to get to Winchester. When I lived in Fredericksburg, I worked in Winchester for awhile- its 80 miles each way....with the speed limit in Virginia, youll be there in just over an hour!
This is really great news...being proactive, and looking for answers has to make you feel better too, doesnt it? I hope so! Your doing the right thing and it sounds like this doctor will at least put you on the road to finding out what can be done! Having a trusted physician is worth its weight in gold!
Let us know how your appt goes!
Hugs,
Nikki
__________________
RRMS- dx 05

 
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