Hi all, This is my first post. I’m American, but I read some posts in the forum and felt like this was a good place to ask questions. About 6 months ago I started periodically tripping over nothing so finally about 1 month ago I started looking around the web to see what could possibly be going on with all my shoes. Then I read about MS and everything changed. When I read the list of symptoms, it felt like reading a synopsis of the last 10 years of my life. Profound fatigue earned me a depression diagnosis around 12 years ago which seems to have served for a handy excuse for doctors to give up looking for clues to symptoms that couldn’t be explained by physical exams or blood tests. Chronic pain? Depression. Buzzing beginning in my brain shooting down my body? Antidepressants. Headache? Depression. Etc. Two on the list really grabbed me, though. UTIs and itching. My chronic UTIs began in 2003 and by 2006 I was in a CT machine, but the only result was a recommendation to drink more water and a personal hygiene/ fashion choices lesson. I never would have thought to go back to the records before my suspicions, but there it was in the report. "Clear limitation of the reflex. " I can remember coming across references to MS when researching random symptoms in the past, but shrugged it off because I wasn’t experiencing any numbness that lasted more than a minute or two. I didn’t know that itching could be the same thing. Of course there are 15,000 other things that have occurred which I won’t bore you with more, many of which have just felt like weird flukes that just happen to me and hardly worth visiting a doctor for, especially since I knew they would chalk it up to the next condition I’d concocted in my mind and recommend that I get with my psychiatrist. Again. Psych meds were so unsuccessful for so long that it was determined that I must have bipolar disorder rather than depression. If I thought a depression diagnosis got a doctor out of doing his/her job, I hadn’t seen anything yet. Now they didn’t even bother to pretend that they weren’t just brushing me off and telling me I was nuts. Matters haven’t been helped by the fact that my husband’s job has made it impossible for me to form a relationship with one GP who would have the opportunity to watch how things are timed, clustered and related. It’s impossible to get a doctor to listen to all my random ailments in one appointment. I am too exhausted to attend a separate appointment for each one (as they come all at once and refuse to take turns) and even if I had the energy to spend that much time in waiting rooms, I just feel so defeated from hearing time and time again that there’s nothing wrong. I finally worked up the nerve to make a comprehensive list of my symptoms grouped into categories, with approximate dates as to when I can remember them being especially severe and went to my new GP to ask her for a neuro consult, if for no other reason than to shut me up. That’s precisely why she gave it to me, but at least she gave it to me. I saw neuro a couple days ago. It was such a foreign experience for a doctor to actually listen to the list of all my symptoms AND without a look of dismissive condescension. He did his exam and told me I would need an MRI which would likely be followed by a spinal tap. He didn’t say MS but he didn’t have to. I thought I would feel relieved to be taken seriously and I guess I do. I didn’t think I would feel so scared. My friends and family seem to be shrugging it off as just one more thing I think I have, and it doesn’t seem to matter that this one would explain literally all the others. I feel alone. I’m terrified of what it would mean if they were wrong. I’m terrified of what it would mean if they’re right. Obviously I know that the best strategy is just to wait for the tests and not freak out, but it’s easier said than done. Has anyone else felt this way?
Hi Jamie Mo, I think most of the undiagnosed here feel the same way so you have our sympathy and know exactly how your feeling. So here you have it - a place to share your problems and fears with people in the same situation.j Welcome to the Forum. If its something of a technical or medical question , or a friend for help and support there are loads of peoplehere so just holla if you need us. Frank.
Hello and welcome, This is a good, friendly, warm place to share. We all care, so leave the lonely feeling at the door, come in and get hugs 
Sam x
Thank you!
Hello Jamie Mo and welcome,
Limboland is not a nice place to be especially when the ‘professionals’ think you’re just making things up for attention. I was in that self same position for 30 years until they finally believed me and I was dx with SPMS. Don’t get me wrong you may or may not have MS but at least it is now being investigated which is good and you are partly prepared for whatever the answer will. be. Don’t lose heart, don’t fret over what it could or couldn’t be. There is life with MS and it’s up to each and everyone of us to make the most of what we can or can’t do whatever the dx is. Take care and do let us know how you get on, oh and if you feel like a rant, moan, groan, well we’re all here for you.
Janet
x
Hello and welcome
Well done for persevering and getting that referral
Fingers crossed that the tests show up what’s causing your symptoms, but do try and keep an open mind in the meantime: there are literally hundreds of conditions that cause symptoms very like MS. And that’s one reason to try and stay positive - because some of those conditions are fixable. Another reason to stay positive is that, if it’s MS, you’ve been living with it for 10 years: getting a label isn’t going to suddenly change anything, except perhaps make things easier because you’ll be able to get more support.
Hang in there.
Karen x
Hey there Jamie Just wanted to lend my support and reiterate what the others have said. Glad you’re finally getting the right sort of help which will hopefully lead to a diagnosis. As others have said, please come on here if you want to have a moan. We are happy to listen. Good Luck with all the tests. Teresa xx
Hi Jamie and welcome
Going through all the motions is very much an emotional rollercoaster, just as it is when we do finally receive a diagnosis of some kind. Take heart in the fact that your neuro sounds proactive, but try not to second guess him - it may not be ms. If it is then you’ll find a way of coping. Either way, try to take one step and deal with just one thing at a time.
As for friends and family, well more often than not they don’t want to believe that we could be ill. Symptoms of this nature tend to be ‘invisible’ to the naked eye, add that to the mix and it’s easy to see why it can be a battle to get people to understand how we feel and what we’re going through - even when it comes to our nearest and dearest.
If it turns out that you do have ms then give yourself time to adjust to the news, put yourself first. There are lots of medications and support services that can help. Sometimes just ‘knowing’ what it is can be a help in itself.
Take one day at a time and try not to persecute yourself with the ‘if’s but’s and maybe’s’ - wait for the results to come in. Everyone here totally ‘gets’ how you’re feeling so don’t be afraid to let it all out (so to speak). That’s what we’re here for.
Good luck & let us know how you get on.
Debbie xx
Hi Jamie I’m American too…welcome! I’m from Oklahoma but live on the Isle of Man, where are you from? I’m at the someplace you are. I finally put all my twos and twos together and went to my GP and have been referred for a MRI. I think it’s better to know what we are facing than not. If I know what it is I hope I will be better equipped to deal with it and live a life with it than not. Good luck hope to see you around…
Thank you all. I seriously felt like I was in it alone. I am from Michigan but we lived in Germany for 8 yrs before coming back here. Unfortunately while we were overseas I never saw the same GP more than twice. Based upon my research, if I do have MS, I have been symptomatic for about 10 years and I believe I may be on the tail end of an attack. Does any of that sound like a dx will take a little less time? Are lesions easier to see when there are old (and I assume many)? Also, are there any meds to help with my fatigue and all over feeling like crap? Will I ever feel better, or do drugs just slow down the process of me feeling worse? Thank you!
Hi Jamie Mo, Welcome, I hope you get some answers soon. The waiting game isn’t fun and can be so frustrating at times. I am sure you will find this forum friendly and supportive and some where you can have a moan if you want to. Take care Karen x
Older lesions can become less obvious on the normal lesion-spotting scans; they can also disappear altogether as the body repairs them sufficiently well that they become indetectable by standard MRI. Overall though, the longer someone has MS, the more likely they are to have lesions, so it would be very unusual for someone who has had MS for 10 years to have none visible on MRI.
There are meds for fatigue, but I don’t know what is and isn’t approved in the US. The two drugs commonly used in the UK are amantadine and modafinil (they may be called different things in the US so have a look at www.drugs.com to get all the info). Neither work for everyone unfortunately 
One thing that you can do yourself to help fatigue is exercise. It really does help. Also check out the free publications on this website and on the MS Trust website about managing fatigue.
The standard, injectable disease modifying drugs for MS (DMDs, aka DMTs, ABCRs and CRABs) only work for relapsing remitting MS. They have been shown to reduce the number of relapses people have, reduce the severity of remaining relapses, delay the onset of disability, reduce disability, slow progression and increase lifespan. However, like everything with MS, they do not work for everyone, and their effect is variable (e.g. some people are really lucky and a DMD can stop their relapses completely, but others may have no benefit). The stronger DMDs (e.g. Tysabri) are being trialled on people with progressive MS and the data look promising, but there is nothing “official” for progressive MS yet.
As far as feeling better goes, the best things for that are the right meds & therapy as well as experience (it’s amazing how well we can adapt!). It also doesn’t hurt to eat well, keep as fit as possible and to not smoke.
Karen x
Thank you. You’ve definitely made me feel a lot more at ease about the whole process. It’s a comfort to know that the MRI should give as close to a definitive answer as is possible and that there is hope even in the worst case scenario.