Hi recieved letter today here we go! You will be pleased to hear that the recent MR scans of your brain an spinal cord are normal. In particular there are no patchy changes to suggest a chronic inflammatory process to account for the various sypmtoms you have been having for many years. (it says CHANGES I’ve not had MRIs before, I had a ct scan about 20 years ago) The results of your blood tests are satisfactory as well. There is no evidence of mild diabetes or vit b12 deficientcy. The only positive finding is a slightly raised level of the ESR, which can be an indicator of inflammation, but this is unlikely to be significant as an isolated finding. You do not have any of the circulating antibodies that occur in lupus, sjogrens syndrome and other rare autoimmune disorders. These are reassuring results in the sense that we have found no positive evidence of any of the more serious causes of intermittent sensory syptoms, joint pains and. Fatigue. It is just possible that these syptoms might be indirectly related to your Crohns disease, although that association would be difficult to prove or disprove. In practical terms it makes sense to continue treatment with azathioprine alone if possible, avoiding further use of steriods unless there is a clear indication for stepping up the treatment. I am not sure that there is much more I can add by seeing you again in my clinic in the immediate future, but we could arrange another appointment later on if you think this would be of any help. Perhaps you could write and let me know your views about that. Many thanks Yours sincerely… View and thoughts on this please, I’ve not imagined syptoms and no suggestion had ever been made of trapped nerves etc. I kno something is up because of extreme fatigue and muscle weakness, cud it be fibro ? The only suggestion my doc made other day is Guillian barres syndrome Plus crohns an she thought I was anemic too an gave me iron tabs. I have a niggly feeling that even if I did have the start of ms that because of government changes with DLA etc that the government doesn’t want anyone being diagnosed with an illness that could hinder them from Going to work full time as they don’t want to give out financial help. And so I’ve now will have to go back to a strenuous physical job of lifting all day and back to a 46hr week, and I’ve lost money by being signed off sick for 6 weeks !. I too feel at a lose of what to do next! Any suggestions plz thanks in advance Tracie.
When neuros say “changes” they can mean versus an old scan, but they can also mean abnormal change to the brain matter in general. So what this says is that there are no abnormalities on your scan that might cause your symptoms.
It’s good that he’s offering to see you again - I hope you’ll say yes.
I don’t know a lot about fibro, but I’ve read on here that it can cause lots of neurological symptoms that are similar to MS.
Iron deficiency can definitely cause fatigue and weakness. I don’t know about Crohn’s, but I’m pretty sure it can cause problems outside the digestive system too? If these are under control and you still have symptoms, maybe press your GP more about Guillain-Barre Syndrome? The wikipedia page on it seems pretty good (I don’t know enough about GBS to know really though) and it says on there that a lumbar puncture can help to test it, as can evoked potentials. Have you had either?
As far as benefits go, it’s symptoms that are important rather than diagnoses. It’s much harder to get DLA and ESA these days, but a lot of it is about how you answer the questions. Have a look at the benefitsandwork website - it’s full of excellent advice and information. It costs about £20 to join for the first year, but can be worth every penny.
Sorry that the MRI hasn’t revealed what’s causing your symptoms
Hi Karen and thanks No I’ve not had lumbar or evoked potentials tests either. I am annoyed that my doc told me a few weeks ago that she and Neuro thought id got ms and now not which is good but after lengthy discussions over the last few weeks the crohns nurse insists that crohns does not cause muscle fatigue or pins and needles either! My mum has fibro but I asked my doctor afew weeks back if it was that and she said she didn’t think so, I asked her if it was lack of sleep, over work, muscle strain, stress and grief (lost my dog of 13 years in Sept last year) but again she said not so im stuck now. When I saw her on Monday and I asked her if she still thought ms she shrugged her shoulders an said "what else can it be " and I said must be something and her reply was "a virus that you can have for months which effects everyone differently and causes ms like syptoms " that’s all she said , but she added she too cudnt be sure until she saw results Thats bit diff from what she told me afew weeks ago! She told me to join forum and talk to my cousin in America who has ms and I have so I’ve been living it so to speak!. My arms hurt they feel very bruised and im struggling ti lift kettle etc and I’ve got a cold wet sensation down the right arm (which is the arm id had pins and needles in and lhermittes sign down) but nothing showing on MRI so if it is trapped nerve then why hasn’t that been sorted out? They made me worry unduly and I’ve now going to have to return to work still very fatigued as I can’t afford to be on SSP anymore. Im going back to see my gp tomoz to get some answers! Thanks all
Well it doesnt sound like you are fit to go back to work, but without any more ssp, I dont know what you`ll live on! If you cant lift things, how can you do the job you are employed to do?
I was given sick notes for several months. I never had a diagnosis then, but my GP wrote
debility as my reason for being off work. But I was having tests at the time.
Could you speak to your HR dept and see if they have any vacancies which would suit you better?
Is there any way you could continue sending sick notes in which would in time, mean your firm could look at retiring you on ill health grounds?
Sorry I cant be more helpful.
Hi Poll thanks I have rung my work earlier today and had to wait for HR personel to phone me back which was hrs later I have been told by HR that they don’t want me to return to work until my doctor says im fit and well enough to, and she said she saw I wasn’t well and was struggling to walk last week when I dropped off my last sick note, she said they wud love me to go back but are worried it maybe too early and I wud end up back at square one! So im seeing my doc in morning and need to kno what is wrong with me! Ever since I got letter this morning all I want to do is cry, I feel I need to sob my heart out for some reason I don’t like feeling this knackered all time and I know I can’t really do the job I was doing anymore, it’s a book distribution warehouse and there not your normal type of book, they are mainly religious and political type book and English lit books, some very big and very heavy and it’s lifting I struggle with and every job in warehouse involves lifting all day, from unpacking new stock to putting new stock on pallets or on shells to putting orders through DDA and then packing, I lift up to 25kg all day long and it’s hard. I’ve always been an active person and usually when im not at work im busy at home tending to my animals and house work But since I was signed off 6 weeks ago I don’t feel anymore rested for it and my arms don’t seem to get any better! My mum says I shudnt go back at all as job is too manual labour. Over the last few years I’ve battled with my health not letting it get better of me, I lost alot of weight before being diagnosed with crohns and looked gaunt and my family were very worried As the months go by I get worse not better, even though im now on right med for crohns and have gained weight I still don’t ever feel really awake and then as you know I got the weird neurological syptoms. Im worried if my health keeps declining then I may not be able to work full time anymore soon AND if my health still declines then in a few years time im not be able to work at all. I kno it sounds silly and I shud be pleased letter didn’t say anything bad but im disheartened it didn’t give me answers either. I know something is wrong but what ! Thanks all
Oh an my company doesn’t have any other jobs I can do that don’t involve lifting.
Hi Tracey, I was dx with cfs then fibromyalgia in 2002. My symptoms have got worse as the years have gone by. I’m worried that I may have MS because of this. A lot of people dx with fibromyalgia are later dx with MS. A lot of your symptoms sound appropriate for fibromyalgia, I think you should ask for a rheumatologist referral to see if you do have fibromyalgia seeing as they’re not thinking MS at the moment. Good luck, D
Hi D thanks Yes im seeing my doc at 11.30am today, my mum has fibro she was diagnosed with it when she was still at school she said it was called rheumatism of the muscles then, then the name of it changed again to fibrosis and now fibromyalgia, and she has thought for along while that I have it too She says it comes in waves, you can either start day feeling stiff or weak and either feel worse or better by end of day and that syptoms can disappear for few days then reappear for no reason. I’ve always said my muscles were affected more than my joints which apparently is the case. And pain can be worse on exertion. Just about every syptom I have ticks the fibro boxes also. I don’t sleep well, I wake easily, I have lots dreams I feel like I’ve been beaten up, muscles feel bruised for no reason. I have tinnitus, feel lightheaded alot and faint I have become intolerant to load noises and irritated by other silly noises too. I’ve become alcohol intolerant (can’t touch it makes me violently sick even half larger Im also dairy intolerant I get hives affair bit And eczema too I feel nauseas alot I have become very forgetful and lose my train of thought Im extremely tired during day and can be wide awake at night I am either very hot or freezing cold! I feel my head is too heavy to hold up Im having to get up during night for toilet I crave sweet foods I have swallowing probs (nearly choked several times on liquids) I get neuralgia in my face from cold weather I suffered hair loss awhile back Acid reflux mainly when lying down I sometimes have blurry vision like I can’t focus properly Walking difficulties, either im stiff or jelly legs Balance off worse on days not slept properly Clench teeth during night (sometimes daytime too) Dry eyes and mouth Nasal allergies Night time my body can be on fire for hr or so then I can be freezing and shiver Vertigo Random stabbing pains Muscle twitches And pins and needles and buzzing calf muscles The list is long I kno sorry! Im going to ask doc today thanks tracie
How did the doc appt go?
I’ve had symptoms v similar to yours and due to have another mri soon.
How did the doctor’s appt go?
Hi your symptoms are errily like mine , i think i need to go back to GP x
Hi my doc is now referring me to a rheumatologist now, but I must admit shes gone from being very caring (sitting holding my hand while telling me I have ms) to mow "you must be pleased " I said yes BUT letter didn’t day what I had got, she is starting to make me feel like a hypochondriac! BUT at least she’s referring me BUT how long I’ve got to wait for appointment I don’t know. I can’t understand how she cud be so sure I had ms to now shrugging her shoulders at me! I’ve had most of my syptoms for all my adult life BUT THE NEW syptoms listed below I’ve only had about 5months which is why I went back to docs in Nov Strong pins and needles all way down right arm with tight band feeling round top arm (tight band feeling last about 6 weeks) Also everytime I bent forward I got a rush of cold even stronger pins needles feeling down the arm that lasted for around 10 weeks, I had not pain in neck or should or arm at time to suggest trapped nerve, that has gone now and im left with mild pins needles in ends of fingers and a cold wet feeling down arm. Also random sharp stabbing pains jump around my body and they are painful Buzzing calf muscles Very twitchy calf muscles feels like pop corn popping My balance never been great but has got worse over last year Terrible bout of vertigo about Month before pins needles started, I felt like I was falling back wards or sideways. I didnt have MRI with contrast, SO if I’ve had fibro alongoing while and have only just started getting MS over last 6 months and my syptoms had settled down by time I had MRI WUD any leisons show on MRI or wud they be so small or have healed so they wud be invisible? I was bit worried that if contrast was not used they wudnt see anything (after reading posts etc) IF I do have ms then it will show it self again so to speak, if not then it all must be fibro and getting older? Im through menopause so it’s not that lol But im sure my doc now thinks im mad! I just want to know and get some treatment what ever it is thanks
I too am like you. I seen a rheumi who dx.d arthritis of lumber spine and fibro but I was then referred to Neuro with same symptoms as yourself as there is some sort of nerve damage going on. I have had brain/neck scan and am going for EMG next week I am under pressure from work as will have been on sick for 9 weeks next week but I simply cannot concentrate anymore to do my job and I have to use a wheelchair as my balance coordination is really bad. Work have asked me to come in and see occ health but I simply am not well enough so dont know what they will do to me now. I feel for you as the frustration is terrible but they have to rule out the possibility of MS first. My Rheumi did tell me about Fibro and explained it can affect the central nervous system so it could be fibro causing all of this I suppose its like anyone we are all diffferent some have FM with little symptoms were others can suffer badly like you and me.
Thanks Wendy, im seeing my doc again today.