Could it be MS

Brain and nerves
1

Hi

So with ongoing health problems I was sent for an MRI last Sunday and I'm yet to have the results back yet but I am worried.

Back story:

Been having problems since January 2013 , fatigue , vision issues were how it started and a confusion on concentration.

Went to the GP on numerous times and lots of blood tests later and found to have a b12 deficiency was 149 so had loading dose and now having 3 monthly injections , also had vitamin D deficiency and take 1000iu daily , under active thyroid and on levothyroxin, symptoms seemed to lift for 6 months but in last two weeks had a flair up with numbness in my face , a crawling burning in my head and what felt like a tension headache ,pins and needles in my legs and severe tiredness, lack of balance so much so I fell over outside. Loss of concentration and trouble sleeping. My vision is blurred and heavy feeling in my right eye. I feel so unwell by midday as in exhausted its making me depressed and my. When I went to the GP not my regular one he carried out some tests of my grip and made me stand checking balance , he referred for the MRI as he said it could be a number of things .

Looking back at my symptoms over the last 2 years in wondering whether it could be Ms ?

I'm 33 years old and was always healthy until two years ago but now I have some weird and wonderful symptoms.

Could anyone tell me if the symptoms sound similar and how long I may have to wait for results ? The GP put it through as an urgent .

Thanks for any advice given feel like I'm cracking up

2

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

3

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

4

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

5

Hi Wendy,

Thank you for your reply , I actually feel very lonely at the moment and have even considered this week perhaps I'm imagining the symptoms which seem constant and endless at times. I've been keeping a journal since this started in 2013 and have records of all blood tests and most recently my MRI scan . Apparently it didn't show anything of concern but I was also told it was a very basic one looking to see if I had a tumour , bleed or anything very obvious . I thought an brain MRI was an brain MRI didn't realise there was more in depth ones. Anyway this week my symptoms have still been the constant tiredness , numbness and aching joints , plus a shoulder that is agony and lots of my issues are worse down one side. I go to work come home and all I want to do is sleep. Yet go to bed at night and spend half the night unable to settle. Been suffering a lot with cramp in the night too.

Had my b12 injections start again this week , the doctor has decided on another loading dose due to the level and I'm on 2000iu 3 times a week of vitamin D.

The whole situation is getting me down , I want to ask for a referral because I just feel I need answers and both doctors I've seen don't seem to concerned or contradict the other.

Something is deffinatly wrong it's just wanting to know what. I even resigned myself that if they found something bad on the MRI least I would know that I'm not going crazy.

My common symptoms although these can come last a few weeks and get easier again are

Tiredness ( to the extreme )

Eye blurred ( almost like a film over it and trouble focussing )

Concentration issues ( find it really hard to concentrate on more than one thing , if I'm driving I can't be talking too ).

My balance is sometimes off although less common that the other symptoms.

My memory is awful mainly short term.

Joint pain ( mainly my arms )

Cramp in legs

Numbness one side of face (creeping feeling across my head like insects )

Constipation which is horrid but with bouts of upset stomach

Occasional headaches ( think its caused by blurred vision )

Would anyone know what to do next ? What my next step should be ?

I really appreciate your time.

Thanks

6

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

7

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.

8

regarding the post i'm responding to: i think that constantly looking up information wherever we can, can lead to us completely losing track of what is most urgent, or to something approaching paranoia, too. as for trying to 'work out' what is wrong with us, seeking the help of other people on line with, god only knows what, other health problems is NOT a good idea at all, particularly considering the fact that we don't know who we're talking to, or what their own agenda might be.

take care!

9

i'm glad to hear that you're heading in what seems to be a more helpful direction.

in case you don't spot it, please read my response to kim40552, about 2 weeks ago!