Hi my name is Alicia I'm not even sure where to start. All I know is I'm currently very sick and have been for a while but I have so many different problems I don't know what is going on and what is causing what they keep treating me for multiple different things and I believe one of the underlying problems may be Ms but I'm not sure. However I live in Florida and I am thankful to have health care right now but it is not that great and I'm having to find my own doctors and I'm so tired and frustrated and currently may be having a flare up. I literally feel like I'm losing my mind and can't think straight. I'm already rambling but I really don't even know where to begin I've been doing some research and of course everyone thinks I'm a hypochondriac and I'm crazy I believe that's what they try to tell everybody at the beginning or it's anxiety or something. I guess I will start with the fact that Ms does run my family along with several other nerve diseases. My question would be any advice on neurologist in Florida I've been waiting two weeks to get an appointment while very very sick and frustrated. I went to the psychiatrist yesterday and she suggested that I go to Shands and said they would love a case like mine just curious if anybody is ever been there and how it went I'm scared and I have to travel but I don't know what else to do at this point. So a few of my symptoms right now or the fact that I can't lift my legs to walk hardly at all can't lift my arms I've been having really bad headaches and pain behind my eyes vision problems a lot of weird things are happening my legs are very tight and I'm in so much pain and I haven't been able to take anything but Tylenol because I have gastroparesis which when I'm doing my research says can be caused by Ms but they don't know because I had an ulcer that perforated so they don't know what caused the gastroparesis. I also have been in the hospital every 3 to 6 months for the last 3 years with pneumonia and bladder infections. And I've always had a very bad back with a diagnosis of fibromyalgia very long ago. Now that I think back to 3 years when I was working I believe I had a flare up then when I got home from work I couldn't walk paralyzed from the waist down for 3 weeks and they just said it was from my back problems. Anyways there's so much more but I just need some advice or someone to talk to I guess thank you in advance.
Sounds like you have a wide range of problems and MS can cause all of them but your docs will want to rule out other possible causes before diagnosing you because MS is really hard to diagnose (things like infection, injury/stroke, poisoning, cancer, and yes, sometimes anxiety) . You should ask your doctor if an MRI to check for lesions on your spinal cord and brain makes sense because if they dont find any lesions MS is alot less likely to be the cause.
Hang in there! We've all been there and it does get better.
Thank you for your reply I just read my post and obviously I was a little loopy this morning a little more clear-headed now I think but yes I have been asking for an MRI and waiting on the neurologist to call me now hopefully I will get some answers thank you
If your GP does not believe you and is not providing you a referral to the neurologist or to get an MRI, I would go to the hospital ER or urgent care to tell them all the symptoms you are having that you believe are MS. At that point they will have to run all the tests. Tell them that you want an MRI. They may try to do a CT scan, tell them "No, I want an MRI". The MRIs are more advanced imaging and can see lesions that the CT scan cannot. The MRI though is also more expensive. So keep in mind if you are using private insurance, you will end up with a hefty bill. This is just one alternative, if you feel you are not getting your needs met by your GP or being heard.
Sounds so familiar. It may take a while to get dxd next time you get weakness and all try for an mri and they might be able to get an answer if you are in a flair up. Because of the leasons would be swelling up more. I get a bit nutty I'd say when mine swell up or left side weakness.
Hi Alicia40, You are quite a remarkable woman, 100 surgeries and ms scares you. Losing your mind is strange I know. You can call the National MS Society and ask for a referral to a neuro or go to nmss.org and chat with an ms navigator about a referral. What you already have gone through is amazing to me, your strength is obvious. With ms, i have found that relaxing is improtant, resisting the weirdness is making it worse. All the symptoms you report are the same I have experienced with a flare. Most usually they would give iv steroids to exhibit some control over the symptoms, that too is fun. Have you read 'Take Charge of My MS' in the Treating MS section under Topics on the Discussion page, it has some helpful information. I am sure you know that ms affects the nerves and the nerves mess with everything when in a 'flare' so you are not losing your mind, it is just your nerves messing with you. Quieting your nerves is important. The more you let stress tense your muscles the more the nerves will scream and yell. Observe what is going on, form no opinions, just watch the show. Muscle relaxing exercises work for the tense muscles, and relaxing exercises(both are described on the Take Charge... post) work to calm the anxiety. You are truly a champion, ms is easy compared to what you have been through.
Hi Maria thank you for your reply I have been reading your post all along however I have not had a hundred surgeries I don't remember saying that but I have had quite a few and I appreciate all of your knowledge I am still waiting for the neurologist and definitely have been practicing calming techniques and it does help feeling a little better today however still having a lot of symptoms it's just an uphill battle because everything else seems to mimic the MS I am a diabetic with gastroparesis and it's very hard to control my sugars so they run very high and my blood pressure also and they just keep telling me that it's my back problems causing this anyways I will keep you updated and I appreciate all of your posts it's very informative I did read somebody else's post about having a hundred surgeries and I don't really know how to work this website yet so I hope you can see this post thank you and have a blessed day
Alicia, Anxiety and ms the blog you need to edit, it says 100 + surgeries and 200 procedures. Sometimes my eyes dont work and sometimes my mind does not see what my eyes see, just another day with ms.
Shands is great but if it's Dr. Yang, she's awful. She's heading a big research team, and herhfocus is very much on the research, not the patients. She listened to several of the same complaint from my parents for months, ignoring long-term insomnia and depression, very uncaring and no bedside manner.
Please let me know if you have luck finding someone good. We are in North/central FL.
Thank you for your reply I'm still learning how to work this website and thanks for the input on Shands not very encouraging but nothing is these days I just went and saw a neurologist here in Orange City Florida Dr corak hopefully nobody ever goes to him it was the most horrible experience I've ever had so I'm still frustrated waiting for answers I did get an MRI out of him only because I demanded it but he was by far the rudest most demeaning sorry excuse for a doctor that I've ever come across and I've had quite a few so MRI on Friday and I guess we'll go from there meanwhile been to every other doctor for all my other problems and they keep telling me it's anxiety and that my primary needs to take care of everything and I'm just irritated and ready to give up at this point but I won't I will try to keep updates on here but that's interesting about Shands now that I remember I took my mom there for her kidney transplant and it was like a warehouse and they had no bedside manner now that I think about it any other suggestions Mayo Clinic maybe Halifax that's who saved my mother's life but I just don't know where to turn from here I've been in and out of the hospital for the last three years with the same things and I just keep getting told the same thing it's anxiety it's my back it's my gastroparesis it's this it's that I'm just frustrated I'll stop for now thank you again