Could it be MS

hi im tony i have had simular symptoms for a few years had mri they found 2 white spots on brain that are causing double vision aching most of the time pins and needles in hands and feet feel tied all the time numbness in face some times doctor thought it was ms have b12 every 3 months for life saw optomologist a few weeks ago and he said i need another mri and lumber punchar its doing my head in it can take ages to get a diagnosis i had to wait a month for my last mri results it seems like they dont give you a strate answer to what the problem is they told me it was neuropathic pain and gave me gabapentin and nortriptoline that dont make any difference at all neuropathic pain is a symptom of ms so is double vision from what i have read some neurologists say there in a connection with b12 defficiency and ms others dont so it could be a long wait to get a diagnosis but i wish you luck with it all clair

hi clair,

i;m sorry that you're going through your health  problems, it's always horrible not knowing what's happening to you, i've been in your place, and it does feel like you're cracking up, i know, anyway, i have ms, i was diagnosed (abbreviated to dx) in 2004 (coincidentally, i have the same folic acid/B12 issue as you).

the problem with pinning down an ms dx is the wildly varying experiences of each person with the condition, and how we report our experiences also varies a hell of a lot. our nervous systems are so complex, of course. generally, it's not just about the results of 1 mri that are used, but at least one more, at a later date, this is to see if there's progression over both physical space (lesion/s) AND time. there may or may not be a change, even then, which doesn't necessarily rule out ms, as even if it IS ms, it might not have been actively progressing between mri's, OR, if it's remitting, it could even have improved. you can see why so many of us have a long time to wait, to see if we have ms or not. it's also accepted practice to do a lumbar puncture to look for oligoclonic bands in our cerebrospinal fluid. a full examination will almost certainly be carried out by a neurologist, to test your reflexes, balance, response to stimulae (hot, cold, soft, sharp etc) and so forth.

i would always strongly advise anyone with ongoing health concerns, to keep a journal of experiences: symptoms (any and all) , dates when they start OR end, concerns, questions for medics, anything you think might relate to your health problems. take your journal with you when you go to appointments with any medics, and, if possible take someone with you, it's handy to have another person listening, as it's easy to miss things.

in terms of whether or not your symptoms might be ms, the short answer is, that it could be, your description certainly sounds familiar to me, sorry, again, it could well be something else, or nothing to worry about at all. hopefully, the docs will get to the bottom of it quickly, either way. 

pace yourself as much as you can, and rest when it's possible.

good luck. x

i forgot to add, i really recommend the ms society website forum, it's a real help for anyone going through dx, as well as those of us dx with ms

Hi Clair, 

You are not cracking up! Do not let anyone make you feel like that either!

I feel better helping others with medical information, looking it up, within my family. I have been treated very similar to what you are saying. But it sounds like you have some possible good physicians as well that care. If you have a few that is great! 

I have had different issues within different areas of my body involving different organs...so most doctors haven't been very helpful where I live. I wish I had answers for you, as well as myself. I have had all sorts of symptoms and it seems the doctors just don't want to deal with anything difficult, where they may fail. I am getting an awful run around, due to moving from an area where people can't drive and I was even more injured the 3rd time someone was careless and ran into me at a stoplight. Due to being unable to work and being pretty much a useless glob on the couch anymore...I have found the best way to figure it out is to do it yourself. Look up everything you can and when you see that the same disease or illness keeps coming up, check into it. I kept telling my doctors something was wrong internally, not just my injuries all along my spine. Do you know who helped me?! The PA! She ordered tests for me...turns out I have multiple things. Anemia, low vit D, low B12, no B1 or B2, dizziness, constipation, diarrhea, overwhelming heat all over, hypothyroidism and common variable immune deficiency. Although it is supposed to be common, only the immunologist knew what it was. A lot of things follow with it. Turns out multiple diseases and illnesses are never tested for, whether or not you have insurance. I wish I had help for you but I will be more than glad to assist you and have and give an ear to help you through this. The worst thing is being alone in it and no one believing you. Most Drs blame it on pain meds. Sure if I took 50 or so a day and drank or something. I take two of a low dose, because I do not like taking meds. 

Keep looking up your symptoms and investigate whenever you feel the strength to do so. That is difficult, I know. I have no one around to give motivation or encouragement, so at times I think I am losing it. But the MS symptoms fit me as well. I have just returned from the ER for the 2nd time in six weeks, while I have multiple deep vein thrombosis that can kill me at any moment. I seem to be the only one concerned. I had a cardiac monitor and I was trying to get the info from the company for the ER before I lost the ability to think or speak or breathe, which happened before. It started the same numb and tingling hands and feet dizziness then continual decline in breathing and loss of using my brain, I feel due to the lack of oxygen. I could tell you multiple horror stories about the medical visits I have been through, but I don't want to get you discouraged. 

Keep in touch and I would love to see if we can both figure out our own issues. As a matter of fact...I think we should start a site for others to do so as well. 

I do suggest you look up information on any physicians you choose to see online. It helps to see their surveys, their specialties, amount of cases...If you need to drive to a specialist with more experience...do it! All physicians are not even remotely the same. If they appear to not care, they don't! You have to help yourself. Look up more and more symptoms and go to the library and research. I have gone from being prime health when in my 40's working on my feet 65 hours at least every week for over 25 years, working out at the gym, feeling great...to being unable to clean up my house, being diagnosed with depression, adhd, anxiety, ptsd, almost every vertebrae bulging, multiple surgeries, immune deficiency which requires monthly IV infusion just to stay alive for the rest of my life, no energy, no ability to work in any form, memory that has gotten so bad I can't even spell now. So you are not alone! 

Hang in there! You are the only one who knows what you are feeling like. Make them listen! My heart goes out to you! I hope you can get help. 

I advise you to consider also the changes that happened at the time that the majority of the stymptoms started. Consider contaminations, illnesses in that area at that time, what is in your water... 

Best to you! If you would like to keep in touch, contact me.

Kim

Well today seems like it's been a good day. I went to see my neurologist and now don't feel I'm going round the bend. He agrees something isn't right. I have been put on vitamin d spray to take every day as the tablets I've been on do nothing , he has also suggested weekly b12 injections. He is sending me for a visual evoked potential test as my vision is a concern and we are going from there. Hopefully I start to get some answers.