I am very new to this but needing a bit of support and advice. I’ve not yet been diagnosed with MS but am going through investigations via my neurologist. To start with I started getting numbness (subjective) in my left leg back in early June this year which my gp suggested was sciatica then I got some numbness in my left arm which my gp explained as possible carpal tunnel, I might add that neither condition was investigated but then mid august I noticed some light numbness on the left side of my face sometimes radiating across my forehead and over my eyes. Obviously I was worried and consulted my gp again who went off on a tangent and sent my to my dentist for a possible swelling in my mouth. Of course my dentist could see nothing wrong so I went to see a different gp who did lots of blood tests to rule out vitamin deficiancies, thyroid, coeliac and many other things. These all came back fine so I was referred to a neurologist, luckily for me I am with Benenden and didn’t have to wait long, I saw him on 4th October, explained my symptons and he gave me a thorough physical examination and could find nothing neurologically wrong with me, explained my numbness was subjective rather than objective, apparently a good thing but scheduled me for an MRI just as a precaution that day. Had the MRI and got to see him afterwards where he went through it on the screen. I had some areas of scarring which scared me but he then went on to say that you’re allowed one area per decade (I’m 40 this year) and because I’ve suffered from migraines, I’m allowed another couple which he confidently said meant my scan was normal. Of course, I was relieved at the time but still had nagging doubts as I’ve had other symptoms not sleeping well at night (can’t remember the last good night’s sleep I had), extreme tiredness, lethargy, shaky hands and my bowel habits have changed meaning since the beginning of september I’ve needed to go more in the mornings, I don’t have diaorrhea and there is no blood and most of the time the stools are pretty normal looking but I do get hard pellet like ones too. Sorry if that’s too much information, as I haven’t really had trouble actually going, I didn’t class it as constipation but am now wondering if it is along those lines as I’m obviously not clearing my bowel sufficiently so it must be sluggish? Anyway I didn’t mention the bowel thing or the shaky hands at my appt so couldn’t stop worrying that I hadn’t given him the full picture. I spoke to his secretary the next day and she said to send it in an email and when he was back from study leave he’d look at it. Yesterday I received a letter from Benenden with another appt with him so of course I am desperately scared that he’s changed his mind and now thinks I have MS. Does anyone here have any ideas of the significance of this recall? You see I’d pretty much thought that alot of the shakiness and bowel stuff was down to stress and worry. I’ve been to see a counsellor for an assessment and she put my anxiety levels at severe and suggested that alot of my symptoms could be all down to stress even though they are physically present. I’m being referred for Cognitive Behavioural Therapy but this is via the NHS so could take months til I get an appt!!! Any opinions or advice would be gratefully received from anyone having had a similar experience, please…
I got diagnosed with primary progressive MS back in january.
I had symptoms for a couple of years prior but just assumed it was a mental issue and not a physical one, i went to see a standard therapist for about 6 months, then thought i was cured, a few months down the line i was having similar problems so went to a private coonsellor in the hope they would be better, again it helped me for a few months i eventually went to see the Doc who reffered me to have an MRI, within 2 months i was diagnosed with it MS. He showed me the MRI scan too and you can see white marks in my brain and spine which is the MS so it would be worth looking for that. Hey if you have it i am truly sorry but its something that we can all live with.
I quite appreciate what a worrying time this is; actually I think it’s the worst; knowing there’s something wrong with your body but no learned person will give it a name.
Add to that the diagnosis works on the Sherlock Holmes principle ‘Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth;’ not a good way of diagnosing but is the best they have at present.
I’m not portraying something to dispel your worries but I wanted to explain that Neurology is not a definite science and misdiagnosis is common if done quickly only history of your symptoms can give the Neurologist more accurate information.
As far as your second appointment is concerned I don’t think it is something to worry about; just seems like a good Neuro being thorough. I would ask him if his blood tests included APS antibodies as it could be Hughes Syndrome that would account for all your symptoms including migraines. See http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/736
I know it’s difficult but try not to worry. Doris Day was right; que sera; sera; what will be; will be.
Many thanks George and Liveforever for responding to my concerns. I too think it’s a sign of a good neurologist that he is calling me back in and I am reassured and I’m buoyed by the fact that I’m at least with a doctor that I have confidence in. I guess the reason why I thought my shakiness was down to anxiety was because it was weird how it came about, I literally read on a list of MS symptoms that tremor was one of them and thought at least I don’t have that one and then after that kept checking and it was almost as if I brought it about as my anxiety grew, of course that could be sheer coincidence. Constipation/IBS is also something I’ve suffered with before and again it’s usually at times of stress. On the other hand maybe those occurences were episodes of MS that I of course wouldn’t have been aware of.
I appreciate that my constant worrying is not helping matters, contributing to my reduced sleep which inevitably increases my stress and a body that doesn’t rest doesn’t work well either. I am trying hard to keep positive as I have two daughters to think of and care for, they are only 5 and 4 and I don’t want to be grumpy all the time as it’s not fair on them, not fair on my husband either. Thanks for the info on the Hughes syndrome thing too, I don’t know if that was one of the things my gp tested me for, I remember at the time googling all the things on the blood form and this syndrome didn’t come up so definitely something to ask about.
Thanks again for your support, I’m lucky to have friends and family who listen to me regardless of how boring it must get but it’s good to talk to people who have experienced or are experiencing the same fears, I really appreciate it.
Sorry for the brevity of response (long day!) and welcome to the site
I’m not a fan of that “one per decade” rule. Lesions at 40 are not normal, no matter how they dress it up. So, what caused yours? Yes, they could all be migraine or perhaps a vitamin deficiency, etc., but I think you need to ask again. Where are the lesions? What exactly did the radiologist think? Was it a neuroradiologist that did the report? If you were 20, what working diagnoses would the neuro suspect?
Re IBS - there is no official link to MS, but a lot of us have it.
Thanks for your honesty Karen though it did scare me somewhat! I haven’t had a report back yet but the neurologist went through the scan on the screen with me pointing out the scarring. In his letter to my doctor he stated that he could see nothing that suggested MS or any other abnormalities. I don’t know what areas of the brain the scarring was in but from the letter, it seemed like he didn’t feel they were MS related. Of course, I don’t know what he will say when I see him again but at the time of my initial appt he was certain it wasn’t MS.
From what I’ve heard, he has a good reputation in his field, my sister has a friend with MS who swears by him and he comes recommended by the MS Society too.
I’m just so scared right now, last night I literally had 4 hours sleep and my IBS was terrible, today I feel so tired yet my attempts at sleeping have come to nothing. Rang my doctors earlier to try and get an appt to discuss my sleep problems and maybe get sleeping pills, not something I entirely want but after weeks of poor sleep, I’m getting desperate now. Couldn’t get an appt this week but will see her on Monday morning, I’ve tried all the usual things: hot bath before bed, milky drink, no caffeine, reading, Kalms etc etc so hoping a week or two of pills might get me back to something like normality. I’ve never before had sleep issues so this has hit me hard. Anyway apologies for going on and thanks for listening xx
Really sorry that I scared you - absolutely not my intention! It sounds like you’ve seen a good neuro who knows what they are doing and so I would be confident, if I were you, that it isn’t MS, but I do dislike neuros saying that multiple lesions in a 40yo is normal because it just isn’t. Could they all be because of your migraine? (They could.) If not, could it be whatever is causing your symptoms? And if that’s not MS, what could it be? “Normal for your age” doesn’t get you any closer to an answer
Have you had your gastro problems properly investigated? I’m speculating here, but a gastro condition could cause problems with vitamin absorption which could lead to non-specific brain lesions that are written off as “age-related”. Some gastro conditions can cause other symptoms too, which could be confused with neurological symptoms. So perhaps seeing a gastro consultant will help clear things up?
All the stress really won’t be helping though, and that might have to be your priority. Perhaps your GP can offer advice?
