Hello again

[Eriewa1]

Happy Sunday to everyone!

Here I am back on my sofa dizziness weakness in legs I'm starting to see a pattern if I go out and drive the next 2 or 3 days I'm down. I'm not sure if it's the MS or APS or both. The other day I went to Walmart oh my gosh I got real dizzy couldn't walk my daughter had to run back and forth to get the things I wanted. I sat on a beach in front of the store. I hate depending on her she is 21 and should have a life but, she is with me all the time. I just wish she had a desire to drive she wont get her license.

Blood work again on monday. I have a port ,but it only takes it dont give so I end up all black and blue I get poked at least 4 times till they find a vain. I told the doctor I hope nothing happens the ER doctors will think I'm a junkie and not want to help me. He said don't worry it's in my record I have MS and APS. Great, ER dont look at records. 1st thing our ER does is drug testing I could be dead before the test comes back.

Anyway, I'm counting down the days till my appointment in January in Pittsburgh. Someone has to know something and be able to help. At least tell me if it's the MS or APS. I haven't had a MS flair in a year that I know of . But I'm not sure any more if its MS or APS. I dont think my MS doctor knows exactly when my legs act up she doubles up on baclafin. When the dizziness starts she ups the meclizine. I know she is trying to help but, I just wish we knew what's causing the problem. I know they are both very much alike in symptoms.

Thank you for allowing me to rant a bit. Sorry this long I just don't feel good. Xxxooo

[SoulRebel-APS]

It’s ok. I think we all have used the site to rant and let out some of our frustrations. We simply do not have a normal disorder so we are complicated and to tell the truth, some drs are just afraid of us. Lol. Which is ok, because, I don’t trust them enough to go to the ER, very few have a clue and those that don’t do not seem to become interested just want us off their floor so we they aren’t responsible for us. I guess I needed to rant to! 🙂. That’s part of why we are all here. To help each other thru the hard times. I’m sorry u are having such difficulties. I to get dizzy but when I do it’s insane dizzy sudden onset and I have about 3/7 seconds before my legs give and u fall backward. The dizziness is so bad it actually pulls me backwards till u hit the floor or if I’m lucky the furniture. Your not alone.

I hope u have some good luck at ur appointment and it helps you!

Take care

Soul Rebel

[HollyHeski Administrator]

Couldn't put it better than Soul Rebel!

Yes we need to rant and share- just remember believe in yourself (Even if doctors dont)! We know our bodies better than anyone.

Wishing you answers xx

[MaryF Administrator]

Hi, when you go for your appointment do try and write things down in advance in bullet points, your medical history, significant medical events with close relatives, past and present, also symptoms currently. Do make sure they look at your levels for Vitamin D, B12, Folate, Ferritin and also an extensive Thyroid panel, so that nothing is missed, as us lot often have other things going on. MaryF

ps I hope you appointment goes well.

[GinaD]

Good luck with upcoming Pitt apt. Have you tried a gluten free diet? Going gluten free really changed my life. And the evidence is trickling in that undiagnosed food sensitivities are often a major cause of autoimmune diseases. One doctor suggested to me back in the 80s that I should go gluten free, I rolled my eyes and ignored him. After all, how could I be eating something as harmless as bread with no obvious symptoms! But 20 years later, I did go gluten free. And within a month all my blood rheumatology markers fell from sky high to normal or only slightly above normal. NOW if I accidentally eat gluten, my GI tract reacts with nausea, bloating, diarrhea, as if it was shouting out to the rest of me, " No, No, NO! After dealing with this poison all those years, we will NOT? put up with this anymore! GET IT OUT! OUT! NOW!"

[Stereolover]

Hi, I wish I could comment with advice but although I have MS & APS I don’t get any giddy spells so I’m of no help. I’m sorry ☹️

I can’t take Baclofen, after a couple of days it made me feel suicidal so I suppose it goes with the knowledge that every MS sufferer is so different. Good luck with your appointment.