I have not felt well for about two years. Let me start by saying that I’m 54, have hypothyroidism (closely monitored and treated) and am overweight. However I still felt well and had energy until the last couple of years. It started with extreme fatigue. Then I started waking up feeling really stiff and achy every morning. My doctor tested for RA and Lupus but they were both negative. The only thing lab results showed was extremely low vitamin D.
Then my left leg started having a pins and needles feeling which was worse at night but also happened during the day. My left leg also hurts at night. So then my doctor diagnosed me with restless leg syndrome and put me on pramipexole which helped some. Then in the last couple of months, I’ve lost my balance and almost fallen several times. I mentioned this to my doctor but she didn’t seem concerned. Last week my forearm muscle and bicep muscle in my left arm kept feeling like they were tightening up. Then since Friday, I’ve had a muscle twitch in my left bicep. I called the doctor’s office and was told I was probably dehydrated and it would probably go away if I drank more water. Then today a couple of toes on my left foot felt numb.
I’m beginning to wonder if this might be MS but at this point, I think my doctor just thinks I’m a hypochondriac.
Does this sound like possible MS? Should I ask for a referral to a Neurologist? Did any one else feel like your doctor just thought you were a complainer before you were diagnosed?
Wondered if anyone could answer my question,I’ve been having shooting pains in body ,various parts for about a year now,like a sharp shooting pain sometimes and sometimes a dull achy thronging,also sharp electric shock type feelings,sometimes the pains make me shout in pain,very achy limbs especially back of legs and sometimes feel like my foot or leg gives way at same t9me of pain,went to see a neurologist 6 weeks ago,she referred me for an mri which I had 4 weeks ago ,still awaiting results,she also said I had an afferent pupil defect in my right eye,so was referred for a visual evoked potential test which I had yesterday,does this sound like I could have ms ?,am also wondering whether the neurologist is waiting for results of the vep before giving me results of vep?!,am a bit worried! Thankyou joy x
Well, you could always turn up in the GP’s surgery with MS written all over you - that’s what I did, and it certainly avoided anyone thinking I was a hypochondriac, although I cannot honestly recommend that approach on any other count!
Seriously though, I think that vague maybe/maybe not neuro symptoms do tend to leave the medics scratching their heads a bit. Perhaps the best thing to do is to stay calm and keep it factual - keep up to date your notes on your symptoms - times, duration description etc, and try not to get too discouraged if it takes a while for the medics to find what is making you so unwell. Please do not despair - while it is not true always that ‘time will tell’, it is true usually. I hope that you make some headway soon.
Mine took 10 years but never once did my doctor or neuro treat me like a hypochondriac. Every test i had came back with something, it was just my MS according to my neuro didnt run the same course as a lot of peoples. However, even he has told me now he has learnt from my case MS isnt a one hat fits all, so he has learnt from me too.
I kept going but never once mentioned MS i just asked them to tell ME what i had lol.
I finally got more assertive with her and said I am tired of feeling terrible, being so exhausted I can barely function, and worrying about all this and that I want referrals to both a rheumatologist and a neurologist. I was expecting her to just tell me again that I needed to just wait and see if it goes away, but she said she would get them set up.
I got the rheumatology appointment really fast. It’s this Wednesday. However, the neurology appointment is not for six months. I’m hoping that if the rheumatologist thinks it’s nerve related instead of muscle related they can call the neurologist and get me in faster.
Hopefully I will have an answer to what is going on soon.
VictoriaKate, I have to say in fairness that they listened straight away - I think it was clear to them from the start what the problem was likely to be. Unfortunately they were right!
Have you actually been given a ms diagnosis? As far as I’m aware you won’t be offered dmt without being diagnosed but I could be wrong with that, I’m sure someone that does know will put me right though… anyone??? Ms nurse referral follows the same I think. Have you had any MRI scans or a lumbar puncture? What were the results of those? You should perhaps go back to your gp and tell him your concerns & frustrations, he should be able to help tell you what your nuerologists findings are at least and what he plans for your future testing. How are you finding things with the steroids? Any better?
I had the rheumatology appointment Wednesday. Doctor said I have bursitis in both my left hip and left arm. This determination was made after a series of her pushing down on my arm and leg or having me push up against hers. She said both my left leg and left arm show weakness. She gave me steroid shots in both. Initially they seemed to have helped but my leg was back to feeling the same way by Friday night and my arm is now back to spasms in my bicep. I was basically told to lose weight and that I was getting older and these things are things I just have to expect. If it was bursitis it seems like the shots should have helped more than 2-5 days.
Hi Thanks for your prompt response. Sorry my pist wasn’t very clear. Yes I was give a diagnosis of RRMS. My MRI scans showed active white patches in brain, cervical and lumbar spine. No lumbar puncture is planned I.pewsume based upon I think what are called McDonald’s protocol. I am feeling a little better on the steroids in that my walking is improving and spasms in feet and hands lessened but my altered sensation in lower limbs and hands are still there,
What a pity that the benefits of the steroid injection seem to have lasted about as long as an M&S prawn sandwich!
Ah well. Give it a bit of time and who knows what might improve (and fingers crossed that they do improve). At worst, you will have edged one step further down the path of eliminating possible suspects from the enquiry.