Hi all 
,my name is Tracie im 44 and was diagnosed with Crohns desease in July 2012 after going back to my docs as I had been diagnosed with colitis 3 years early and my syptoms were not getting any better and I was very thin and felt very ill my main syptoms were diarrhea having to go loo up to 7/8 times aday at worst Servere muscle weakness feeling bruised Very stiff muscles hurts to climb stairs, bend etc Lightheaded often can happen wen sitting,standing or walking Extreme muscle stiffness somedays, sometimes lasting for a few days to a few weeks Vertigo, feeling im moving going to fall backwards when standing or feeling of falling to the side can be bit scary on bad days Balance off when walking in straight line I seem to vere off to the right, sometimes losing my balance and crash into door frames etc Pins and needles in right hand and left fingers and tightness in top of arm like a blood pressure band is round top of arm, had this now for 10 weeks Also night sweats During day im either too cold or too hot Feel ill dizzy after having a bath sometimes having to stand outside to cool off afterwards then laying down till ill feeling passes My bothersome syptom has been extreme exhaustion very very tired usually wanting to collapse mid/late afternoon. Having to get up in the night more recently to pass urine Hate summer heat if above 70f get headaches with heat and feel prickly itchy skin Break out in hives regulary too Vision probs blurry in right eye but pain in left Strange feeling in top jaw and top teeth it’s like a tightness like my top an bottom jaw not sitting together like they use too Also have swallowing probs nearly chocked on few occasions getting liquids an food caught in airways, I try very hard not to talk an eat at same time now Have become very forgetfull more recently and making mistakes at work too where im sure I’ve done something like counted correctly and found I havnt this is not like me Also unable to sleep all night waking with mid back pain which I’ve been told is spasms. Also stabbing pains in feet an other random body places And tingling an twitching in legs I was concerned that most syptoms that were not linked directly to my crohns were not going away, when first diagnosed with crohns in July 2012 I was put straight on steriods prednisolone 60mg and the first few days I fell like id been hit by a bus and have eye pain I felt like they were going to burst out of my head and sunlight made them hurt but after the first week I started to feel great, and improved more in the second week, I must say I hadn’t feel so well for over 10years but I cudnt stay on them so I slowly had to be weaned off them and started taking azathioprine which im still on 100mg daily But I still was not feeling well so returned to docs and told her how id been feeling and she said she was referring me to Neuro I had my appointment yesterday 10th Jan and the Neuro asked me how id been and I told him I have bouts of syptoms lasting sometimes from a few days to a few weeks and sometimes up to 2 months Recently I had weeks of extreme muscle weakness and joint pain and extreme tiredness with vertigo then it vanished overnight Can this happen with a relapse? Be very ill then suddenly wake up one morn an feel much better? The Neuro done some reflex test an eye test and then asked me to touch his finger then my nose etc After this he said that he thought id got at least 1 possibly 2 other things going on aswell as crohns and said id have to have MRI on brain an spine and shud get appointment in 3 weeks so not too long to wait. He didn’t say what id got but just said one condition may be helped by azathioprine that I take for Crohn then that wud be rheumatoid arthritis What is the likely hood of me having ms also? I’ve had some of the above syptoms on an off for 15 years BUT HAVE NOT HAD leg paralaysis so wud it NOT be MS Very sorry for long post and sorry if spelling mistakes using my mob thanks Tracie
Also just adding, have gone through early menopause so some syptoms cud be linked with this. And when saw neurologist Thursday I had lots bloods done, im also around animals alot so am being tested for lymes desease and also lupus and vit d and vit b deficientcy so hopefully will know soon. Also I work full time in a warehouse lots physical work and keep busy in my free time with my animals so im not usually sitting about doing nothing so I don’t think my syptoms are of depression even though they do get me down at times. Anyone can help plz all comments welcome thanks
Hi Tracie, and welcome
That’s one heck of a symptom list! What a lot you’ve been having to cope with 
The good news is that you’re already on the right path to getting some answers because it sounds like the neuro is on the case
It definitely sounds like there is more going on than Crohn’s. Whether or not it’s MS will hopefully become clear soon, but I will say that some of your symptoms are not associated with MS, e.g. the hives, so something like Lupus or Lyme’s may be more likely. Also, MS relapses do not tend to vanish overnight - the more normal pattern is a gradual recovery.
Not sure why you thought leg paralysis was important? It is not a common symptom of MS: it does happen, but most people with MS would not ever experience it and having it or not having it would not rule MS in or out.
I hope you don’t have too long to wait for your results and the MRI. Fingers crossed you get some answers, and help, very soon!
Karen x
Hi Karen thanks for your reply, I did think ms affected legs more but after reading abit more about it I’ve learnt more, im hoping theres nothing more wrong but av to wait. I suppose what I mean about relapse is gradual but generally I did alot better suddenly over night, I still had muscle weakness and stiffness but not as servere as id had 3weeks before. I cud of been bitten by a tick as I keep guineapigs lots of them and am around hay alot and have 2 cats so theres a possibility cud be lymes or lupus, having crohns I know I don’t get enough bits and my diet is controlled by my bowel so I eat alot of breads an cake to bind me, and im also diary intolerant too. Hopefully be sorted soon thanks
[quote=“tracie1968”] Hi Karen thanks for your reply, I did think ms affected legs more but after reading abit more about it I’ve learnt more, im hoping theres nothing more wrong but av to wait. I suppose what I mean about relapse is gradual but generally I did alot better suddenly over night, I still had muscle weakness and stiffness but not as servere as id had 3weeks before. I cud of been bitten by a tick as I keep guineapigs lots of them and am around hay alot and have 2 cats so theres a possibility cud be lymes or lupus, having crohns I know I don’t get enough bits and my diet is controlled by my bowel so I eat alot of breads an cake to bind me, and im also diary intolerant too. Hopefully be sorted soon thanks [/quote] Ment vitamins not bits! Touch screen mobs! ’
Hi, azathioprine is also used for Lupus which can effect the nervous system and cause MS type symtoms. It is another auto-immune disease. Lupus can cause skin rashes that can look like hives.
Regards
Moyna x
Thanks moyna
Hi Tracie,
I have SPMS and Lupus (SLE) and the lupus gives you a horrible rash, makes your arms ache and legs. One night I was in so much pain from lupus in my shoulders I actually hung my arms out of the bed and begged my o/h to chop my arms off to get rid of the pain. Once on the right drugs I felt heaps better. I still have the butterfly rash on my face and get the odd spots anywhere on my body and everyday I use Factor 50 + so the sun-rays do not bring any more rash out.
I wish you luck with your dx but it’s all connected as it’s CNS disease.
Janet
x
Hi Tracie - I am in a vaguely similar situation. I am being treated for Pemphigus vulgaris (PV) - an autoimmune blistering disease. I won’t go into the long complicted story with all of that. I have been, and am, really unwell and stuffed full of drugs. I assumed that all sorts of weird stuff going wrong with me was to do with that, or just bad luck. Learning about MS was a bolt from the blue - a lifetime of seemingly disconnected health misfortunes suddenly begins to make sense. What is frustrating is that doctors are too ready to, focus on their speciality, worry about keeping treatment costs within budget, and they do not to try and draw all of the things we tell them into a coherent story.
I am also annoyed that the system works against us as well. For instance, hospital doctors try to avoid referring us to other units within their hospital as the cost will be taken from their own budget. So if you need help with a problem that comes to light while being treated for one thing at the hospital they tell you to report it to your GP to get a referral back to another department at the same hospital. This means the costs come from the GP’s budget. I believe this causes a terrible dilution of awareness of any bundle of conditions. My GP looks at his watch if I try and tell him more than one thing - so any dialogue to join things up is near impossible.
Why doesn’t the hospital doctor that is treating us go and have a chat with the colleague in another department and ask to be kept informed of their findings and so on? I know the answer to this of course - massive under-resourcing and a system where cash outcomes trump health outcomes.
So, like you, I am at the beginning of the journey of finding out about MS. In terms of your symptoms my understanding is that any combination of things is possible - you can have MS without falling over. And all of those MS symptoms can individually be caused by other factors. I fell over three times last year due to sudden paralysis in my left leg and put this down to the PV medication - I have had treatment for bowel, sleep and headache problems but the most anoying and seemingly most innocuous problem that could be MS related - I lost the ability to tolerate alcohol about eight years ago. Damn.
Hi Janet thanks for your reply, I’ve been getting hives on the insI’ve had ide of my arms and sometimes my legs ankles mostly, but if I take an antihistamine tab it goes away. My arms are weakest I find it agony to dry my hair, lift kettle if more than inch water in and tip water out of saucepans when cooking ,But my job involves alot of lifting which I struggle to do but do it, my hips are very stiff and can be for weeks on end making bending at work very hard, then after weeks of muscle and joint pain I’ll get days of jelly legs where I feel my knees are going to buckle or my legs just collapse beneath me. I’ve had these syptoms on an off for many years and lightheadedness, but also with syptoms in my above post the thing that bothered me most was the gaps between syptoms is alot shorter than it use to be and the pins and needles in my arm ive had now for 10 weeks too, ill be glad to find out what is causing this. Thanks
Hi Janet thanks for your reply, I’ve been getting hives on the insI’ve had ide of my arms and sometimes my legs ankles mostly, but if I take an antihistamine tab it goes away. My arms are weakest I find it agony to dry my hair, lift kettle if more than inch water in and tip water out of saucepans when cooking ,But my job involves alot of lifting which I struggle to do but do it, my hips are very stiff and can be for weeks on end making bending at work very hard, then after weeks of muscle and joint pain I’ll get days of jelly legs where I feel my knees are going to buckle or my legs just collapse beneath me. I’ve had these syptoms on an off for many years and lightheadedness, but also with syptoms in my above post the thing that bothered me most was the gaps between syptoms is alot shorter than it use to be and the pins and needles in my arm ive had now for 10 weeks too, ill be glad to find out what is causing this. Thanks
Sorry that shudnt of posted twice! Don’t know how to remove the repeat post lol. Hi wheelfan, thanks too for your post, I too cannot tolerate alcohol anymore and havnt drunk for 14 months now, it makes me very very sick and I get bad headaches after a couple of drinks so don’t bother anymore and don’t miss it. You put you don’t tolerate alcohol either does it affect you in same way? Also I cant understand why hospitals take so long either!, if they had looked more into my syptoms when I was diagnosed with Crohns maybe then I wud be sorted out! I had lots of bloods done 6 bottles! An nearly fainted daft I kno lol and am waiting on results then mri scans on brain an spinal cord. I went through early menopause and am lactose intolerant too and with having crohns don’t absorb enough vits but was never advised to take vitamin tabs until I saw my doctor on Friday to tell her about my neurologist appointment and that id read that my syptoms cud be caused by vit d or b12 deficientcy and she quickly wrote a script out for calcium d3 supplement so im now taking 2 aday of those there horrid chalky lemon flavored. Thanks
Hi there Tracie
Quite suddenly, about 8 years ago I found I developed an all encompassing headache within minutes of drinking any alcohol. One of those headaches that is like a blanket of aching - rather than a sharp localised cluster type headache or a violent migraine. This was accompanied by feelings of dizziness and hopeless exhaustion. I just had to go straight to bed. The headaches subsided overnight but an awful lightheaded feeling with a dull ache remained for a day or two afterwards. I did not get any feelings of nausea but fortunately for me I have rarely have that kind of problem.
I kept hoping this was some temporary aberration so I would try a drop from time to time to see if anything had changed. I consumed two glasses of wine at Christmas 2011 and two pints in April 2012 and these experiences were so awful that I have now decided never to try again.
I now embrace my new alcohol free existence as a great benefit but I do miss those cosy evenings in a pub with friends sharing rounds and shooting the breeze, or a glass or two of wine with a meal, and at Christmas a wicked port and brandy combo I learned from my long since departed grandfather. I have tried to sip a soft drink with friends who are having a beer but it really does not feel the same.
What I have also learned is how much the pub and drinking culture alienates and excludes those who do not drink alcohol for health, religious, or other reasons. Sharing alcohol is very important in many people’s working lives - it provides a cultural space that creates areas of a kind of non-committal intimacy. Shamefully a lot of stuff is sorted out informally over a drink instead of properly and transparently in the public domain. I bet the recent changes in allocation of NHS budgets were put together in gentlemen’s clubs by people who receive private healthcare. Please forgive me my negativity here.
I am not interested in intoxication of any kind these days. Years of coping with sleep deprivation taught me to value any feeling of clarity and grounded wellbeing. These days I am loaded up with steroids that give me unwelcome feelings of euphoria and amplified emotional states - so I do not really want to drink alcohol, I just miss those days when life was simpler.
Hi wheelfan , I have now stopped having social life altogether as I was being treated like I was being daft or abit odd cause the reaction I had when I drunk made me so physically ill that my friends didn’t believe me, They use to say I hadn’t drunk enough to spend the next day vomiting and still feeling I’ll the following day too, so I don’t go out now and must say I don’t miss it either, but I wud be nice on special occasions to have glass or 2 but I darnt incase im I’ll. I suffer from alot of allergies and have read that you can have an allergy to some alcohol as some contain histamine (something to do with the brewing process) so I think it’s that. I’ve also read that there maybe a connection between allergies and auto immune diseases too has anyone else heard of this ? Thanks
Hi Tracie - In a way auto-immunity is about being allergic to yourself as I understand it so I bet all sorts of allergies are very common in auto-immune disease sufferers. I will read up. I had lots of allergies as a kid but they cleared up in my twenties. These days I get the odd sudden and short-lived reaction to man-made chemical type products but fortunately animals and plants are no problem.
Hi all, just update really and need people’s opinions to stop me worrying! I had to take last Friday off work through extreme fatigue an muscle weakness, I rang my crohns nurse to ask her if I was having a relapse and was it normal to feel so muscle weak and exhausted She said no that crohns can affect your joints but not muscles, so I was bit fed up! Im still waiting for my blood results that were taken on the 10th Jan and still waiting for MRI scans date too. I still felt no better over the weekend and went back to see my doctor yesterday and she said I was not fit for work as my job involves lifting in a warehouse, and she put me back on steroids Prednisolone a low dose of 20mg aday and also prescribed me with some iron tablets as she said I looked pale which I do lately. Anyway while I was there I told her I hadn’t had my blood results back and asked if she’d got them but she hadn’t and was going to phone the hospital to get them, anyway she also told me she had a brief chat with the neurologist that id seen on the 10th of Jan about what he’d thought was wrong, So I asked her what he’d said and her reply was he’s not sure but has a couple of leads! So obviously I was going to ask what leads and she said linked to my crohns! Im not sure shes being honest with me here as she hadn’t got my blood results there to say so im getting fidgety about the wait! When I saw the Neuro he told me that he thought id got 1 possibly 2 other things going on aswell as crohns! I phoned the hospital to try to get my results and they wudnt give them out over the phone (understanderbly) so I said id had them done on the 10th and it’s over aweek now and doctor still hadn’t had them back, and all the lady said was depends what id been tested for as to how quick blood results come back. I had vit d vit b12 lupus an lymes an rheumatoid factor and CBC etc Is it normal to wait so long? And do you think the neuro is waiting for me to have MRIs before giving me all results? Also why wud Neuro tell me one thing an my doc another? But no one be actually telling me anything. Help plz im sitting here fretting diagnosising myself which is not good as I have time on my hands at mo with being signed off work for a week. Also just to add while feeling so weak last few days I decided sat nite to have a bath, I wish I hadn’t afterwards !, I cudnt believe how exhausted and heavy I felt, I struggled to lift my arms and I felt like a weighed over 100 stone, but after cooling down about hr afterwards I did start to feel bit better an not so heavy. Im worrying as ms is 1 thing the Neuro (I think will be looking for on MRIs) so sorry if I sound abit overaught! Thanks in advance Tracie
Hi, just update I got my blood results back today and all came back satisfactory so it’s not lupus or lymes or vit deficientcys either and fbc was ok too,can’t quite believe it’s not vit d or lupus suppose I shud be pleased But not, Neuro told me in appointment that id be waiting about 3 weeks for MRI dates but I phoned them today to ask if they had sent me a appointment date yet, the receptionist said I was on the list but that I hadn’t been vetted as to wether im classed as an emergency or not, and if not then it cud be Upto a 5 week wait! I decided to then phone the neurologist Secretary and ask her, I said id had my blood results back from docs and that all was satisfactory and no further action required! So I asked if that ment the MRIs wud be cancelled and she said NO it just ment no further bloods investigations wud need to be done and id still be having the MRIs done but could have to wait Upto 8 weeks!!! Now I’ve been given 3 different waiting times! Anyone else experiencing similar on here plz?
Hi
I was in a similar position as you, been off work for five weeks now - blood tests all normal so referred to Neurology. My consultation with the Neurologist came through for March with the waiting list for an MRI up to another six weeks!! Had a bit of a melt down over this and found the money to go private (no holiday this year now!). Saw the Neurologist last Wednesday, had MRI yesterday and seeing him again this evening for results.
Know this is not right, and you shouldn’t have to, but if you can find the money (approx £950) you can get the ball rolling a lot quicker and ease you anxiety and worries.
good luck
Thanks for your reply Wish I had the money unfortunately I don’t and wud have to borrow it. Hopefully I won’t have to wait too long and I will have to go back to work next week and just keep pushing myself through abit longer. Im going to ask my employer if they will cut my hrs back to see if that helps and if they won’t then I’ll probably have to leave my job as lifting is extremely difficult as all my muscles feel bruised all time and im short of breath and have pins and needles now for 3 months, cant walk in straight line and want to nod off through extreme fatigued during late afternoon when im at work! Maybe it’s fibromyalgia or me but had enough of feeling like im 100 yrs old rather than 44, everything is an effort to do, I struggled to dry my hair after bath as. cudnt keep my arm up and my heart was racing and I felt very lightheaded, I didn’t feel better until I cooled off. Just want some energy back! Thanks off
I see that your lupus came back clear which is good. Did you have all the Lupus tests? It is just that Lupus can cause quite a lot of the problems you seem to have which are not MS related such as early menopause, night sweats, painful joints. Other things like raynauds disease (fingers going white when cold) and plantar faciitus (painful foot and heels). I had the basic lupus test at GP but have recently gone to rhumatologist a few days ago and he is giving me more comprehensive tests for lupus.
I have been having neuro problems for 6 years and still not got a diagnosis. I also had early menopause (41) and have been on HRT of 7 years. I raised the lupus with my GP as it is on my fathers side of the family ( 2 aunts and 2 cousins). At 18 I got raynauds and in my early 30s until present plantars faciiltus. I also get night sweats which last a few nights - I get 3/4 periods of them a year. I have also found that Hodgkins Lymphoma (which is what I had in 1990) is a cancer that is more prevalent in young people in the early stages of Lupus! The rhumatologist says that I seem to tick severl lupus boxes. The problem is that I have seen many different specialists for all the different symptoms (oncology, gynae, orthopaedic and neuro) and noone is fitting it all together.
I have one cervical lesion and a clear lumbar puncture. I have been diagnosed with possible MS by one neuro and radiation myleopathy by another. When I googled “lupus and myleopathy” I got lots of hits.
Lupus can be very well controlled today, my cousins both when treated were able to return to playing golf as the medication controls the lupus well and reduced fatigue.
I Have rambled on too much I think.
Moyna x