[SallyC]

Originally Posted by paleon183

Hi I'm paleon183 and I live in London UK

Welcome to NeuroTalk.. Tell us a little about yourself. We are here to support you and just to listen..

[markswife]

My name is Kim Hubbard and I have CP and not MS. I know there are some similarities and differences in the two conditions. Many people can narrow my condition down to two things and they guess MS or CP. My husband also has CP.

[Erika]

Hello Kim,

Welcome to our community.

CP and MS are equally cruel and unforgiving it seems. It must be especially difficult to have both you and your husband affected.

There do seem to be many similarities between CP and MS; especially with respect to spasticity and loss of normal neurological conduction.

Hope that you find what we offer helpful.

With love, Erika

[SmallTownGirl43]

Hello, I originally posted this in the MG group, but I have no idea what I have. It could be Lupus, or primary Dysautonomia, or a bunch of unrelated things plus nerve root issues. I just don't know but hello to everyone who has M.S. and please know that you've all helped me many times without realizing it, as I've read and found strength here before, anonymously.

First, thank you to anyone who reads this. Though extensive experience with internet, have never ever joined a chat room or forum. I'm desperate for help from people who have experienced something like I have and am hoping for advice on how to get treatment & what treatment & diagnosis of ? confirmed by ? tests? my local doctors are not helpful.

HISTORY:
i look like a very healthy, fit, slim, 43 year old. i am well educated, divorced from a doctor for 14 years, never remarried, have a 16 year old son. i have good friends, some for more than 20 years. though i did lose some during the past 4 years because of my strange health issues & non-diagnosis, which can be a "drag" to deal with as a friend, especially when it seems like friend may just be "crazy/have anxiety."

I've had 2 major "episodes." the first one, three years ago, landed me in E.R. three times at two different hospitals, complaining of shortness of breath, unable to lay down and breathe, weakness, headache, muscle & skeletal pain, vertigo, "twisting spine" (rib cage turned one way, pelvis the other, neck the other!), red ears, drooling, trouble swallowing, chewing, eye pain, anxiety (because i was exhausted & couldn't sleep or eat!). was accused of being drug addict at first hospital (i'm not. no drugs in system but they didn't have results back yet, sent drug counselor in who shut the door and asked me what i was "really on"!!!!). i'd been taking 1 alprazolam a night for several years to sleep & when began having such pain and fatigue, did not want to mix medicines, so went to GP (also was having torticollis!) and gave me fluxeril & cspine xray, and said if xray comes back normal to go to psychiatrist. well, i took the fluxeril and that whole night had convulsions, couldn't breathe when laying down, spine twisting, etc. and so in morning had to go to E.R. My ecg said pulse 119 (it was usually in 70's) "Sinus Tach, possible infarct, left enlarged vent, abnormal ecg" and they took a shot of my chest with a portable xray and declared me anxiety & hyperventilation. They sent me away with psychiatrist recommend.

2nd ER visit basically the same, but no treatment AT ALL. couldn't breathe, had to hold my finger in back of jaw in mouth to keep airway open and lay in a bizarre twisted way on couch, but EMT's put oxygen saturation on finger and it said 98%. I said I'd taken an alprazolam and they said they knew I'd "been taking something" because my eyes were weirdly dilated (non-matching dilation). No exrays, nothing. Got to ER, heard my story, told me to follow up with jaw dr. and psychiatrist.

Third time went to Myofascial Pain Clinic here in town (they'd seen me & told me to learn how to "breathe" because was "obvious" my "parasympathetic nervous system was kicking in" and had told me to ask GP for valium instead of the alprazolam, and come back in two weeks. But when I'd gone to GP, she refused to give me valium to replace the single alprazolam a day, acted like I was "drug seeking" and told me to go to a particular in-patient detox clinic!!!! I was so exhausted and tired and hungry and scared i knew I could not stay alone another night (couldn't lay down and breathe!) so actually WENT TO THE DRUG CLINIC! Well, OF COURSE they wouldn't take me, I'm not nor every have been, a drug addict. So I'd stayed in my car by the myofascial pain clinic till they opened and the next day and went in without an appt and explained what had happened. They put me in a room and eventually walked me down to Head Trauma in the E.R. where I stayed for NINE hours, was interviewed by every resident known to man, NEVER GIVEN AN XRAY, CSCAN, MRI, MRA, NOTHING, only valium "taper" (as if I was an addict), and eventually sent home with instructions again to see psychiatrist and jaw dr, because of my "complaints."

Yes, all this is a true story. So my best friend came from different state & saw I was having spasms all over face, head, etc. took me to nyc and there was given MRI, cscan, orthodontic appliance to keep jaw & airway open while sleeping, daytime bite plate, dx: secondary hypothyroid, given jobs stockings for swollen legs and feet, propanalol for anxiety/tension when going to sleep, an inhaler for inflammation of alveoli, a diet for leaky gut, IBS, magnesium for spasms, Wobenzym for inlfammation, trigger point injections to head, neck, scalp, botox in masseters.

MRI CSPINE: no compression, yes to loss of lordosis, partial disc diseccation changes at mid & upper cervical level. disc spaces and vertebral body heights otherwise well maintained & display acceptable sign.

BRAIN MRI: vascular asymmetry with small right internal carotid artery and right vertebral artery seen. no scalloping distinctly seen to suggest avasculitis. MRA may be performed for better evaluation.

endoscopy/colonoscopy: functional dysmotility, GERD, slow emptying, constipation, incomplete evacuation, esophogeal stricture, received esophogeal dilation while totally knocked out w/anasthesia. noted tertiary esophogeal contractions while out.

I've spent two years recovering from all that, and one year basically "normal" again, except taking hypothyroid meds, vitamin D3, 1000 mg daily of magnesium because when tried to stop got contractions again, and finally given 150 xl wellbutrin for brain fog and fatigue. it worked well, but just took edge off fatigue & body pains. then prescribed adderall for ADD and it took my fatigue away and gave me back my "normal" life of 15 years ago.

Now had a second episode two months (almost three) during which I experienced my first serious car acciden (didn't see car coming, at all?) but without convulsions, and only 1 night of non-sleep. Refused to go to ER, so waited till morning and went to shrink, then to pysical therapist. cervical neck strain, and 1 cspine xray showing more of the same. Neurology appt in 2 weeks. This time also had crazy itching, night sweats, red ears, and PT diagnosed POTS unofficially by doing laying, sitting, standing pulse and then exercise pulse. (cannot exercise, cheeks turn blue).

I'm so tired of getting run around. New pyschiatrist said all was "anxiety" until he got to know me better & I told him that if he proved it by ruling physical reasons out, I'd accept that dx. Asked him to explain the tertiary contractions while totally out under anesthesia. he was sure pulse and anxiety were combo of wellbutrin 150 xl 1 x daily, and and adderall, 30 mg 2 x daily, plus thyroid meds. tapered wellbutrin and back to 1/2 that and pulse even higher. ecg says pulse 110, sinus tach, low voltage in frontal leads.

Here's my "Red Ear" (and i'm wearing the jacket because I'm cold. in my own house. I had been watching TV when this one came on. And my nose swelled and got red, too. No, no alcohol. Just watching TV!) oh, I'm new so it won't let me post link to pic.

I'm almost "better" again. Spasms gone. Sleeping fine. Fatigue worse than ever, brain fog better, anxiety gone, swelling of legs & feet still present, eyes only sometimes strange feeling. but now nausea and flu feeling, moderate loss of appetite, forearm soreness, weird tinglings & pain, flushing neck, weakness (have a hard time opening medicine bottles, lower legs have fatty atrophy). swallowing problems & swallowing problems come and go.

[ANNagain]

Welcome to NT/MS Forum STG 43.

Wow, you have been thru so much and received so little, it seems.

While your history doesn't scream MS to me, I am glad that there is information here that can help you. We do have things in common. Many of us were not believed or told our symptoms were of a psychiatric nature. More so before MRI's but even today it happens.

Some things to try:
Keep notes (symptom journal that includes dates of exams and tests).
Ask for copies of all reports and keep a file of those.
Get CD's of MRI's and other X-rays.
Try to do somethings that have nothing to do w your medical situation

And water your friendships and keep them growing. Support them as you are able. It sounds like you have a keeper in the friend from NY.

My best to you,
ANN

[grannyruby]

hi, my name is granny ruby..i am a 75 yr old christain lady. I started getting sick in may. (pcp,eye dr,neuro surgeon,back and forth,er visits, ct scan, mri scan)..finally in sept, a neuro looked at me and in 10 minutes told my daughter and me..u have MG..i have been thru many things in my life time..actually i have had 26 surgeries, to many things to mention..where this disease came from i do not know..everyone was shocked and some still are..i have double vision, my head is on my shoulders, been to er.(2).thought it was a heart attack, peridsone, mestinion,(cellceft, on this now) weakness, i wear a neck collar, sweats and u name it..this disease has consumed me..the thing i am trying to find out more about is "TREMORS"..everyday..they last for a while..i dont quiver, trying to think of the best way to describe it..parkenson disease..thats it..they absolutely take me down and all the strength out of me..just wondering dose any one else go thru this..glad im here, i know i'm not alone..

[ANNagain]

Granny Ruby,

Welcome to the NT Multiple Sclerosis Forum. I am sorry you are having a struggle.

Although this is the MS Forum, some people w MS also have MG. I don't know if there is any one on the forum w MG, tho. We have much to share in learning to listen to our bodies and managing the precious energy that we do have.

You are not alone. Stay awhile.
ANN

[paleon183]

Hello Kitty, welcome to neuro talk.

[Reeseyboo]

Im 33, mom of one from Ohio. I was dx w. MS 10-5-12. Its taking some time to get used to that's for sure. I started my Avonex therapy last mnth. Im here for support.

[SallyC]

Originally Posted by Reeseyboo

Im 33, mom of one from Ohio. I was dx w. MS 10-5-12. Its taking some time to get used to that's for sure. I started my Avonex therapy last mnth. Im here for support.

Welcome Mom of one.. What part of Ohio? I'm near Dayton.

Take off your shoes and make yourself comfy.