Worried it is m.s. What do you think?

I have had chronic pain in what I would describe as my bones and joints for a long time. I have recently been diagnosed with fibromyalgia. In October, I had numbness and tingling all over and it seemed to start in my hands and feet and work inward on both sides symmetrically. By the end of the week, icould hardly walk and couldn’t lift my arms above shoulder height. I was admitted to hospital and a neurologist scheduled a MRI and a chest exray. I also had a heart echo. All clear. I felt as though I was having brain zaps when I lay down and it was badly affecting my bragging and chest muscles. I had diaphragm spasms also. Throgh November and December, I felt awful. I was unable to drive, could only shuffle short distances, I couldn’t lie down to sleep as my chest muscles were so weak. I lost my appetite and my jaw became really stiff. I yawn a lot. I kept going back to a and e. Finally saw a neurologist in February. By then as now, I am able to drive short distances and walkaround the village again. An emg in February was clear. The neurologist detected real weakness in my legs.i am so fatigued and scared. I had the flu shot before this started, a week before but to be fair I was waking withnumblegs slightly before that and felt as though I was getting weaker. Any thoughts? I thought mnd but I am hoping that because there has been improvement that it is not that. I thought mild gbs but nothing showed on emg. Could it be m.s? Verydown. Have a four year old and we were about to adopt. I feel awful most of the time. I am on gabapentin, amytriptyline, and diazapam. Thanks.

Hi Michelle,

My mum had fibromyalgia and from what yu say about the pain and muscle weakness it fits with what she had. As for the other symptoms, they do sound “neurological” but have no idea if they could be MS related, there are many illnesses that have these kind of symptoms.

You don’t mention what your neuro thouhgt it may be?

You are also taking quite a coctail of drugs, surpised you on amyltriptine AND diazapam, maybe talk to GP/neuro about changing reducing meds. Through experience i have discovered side effects of meds can be responsible for lots of symptoms.

Really hoping you find answers soon, wishing you well xxx

Well my neuro says he doesn’t know. That something is definitely going on, but he is not sure what…

I have tried to reduce the meds but the diazapam controls my diaphragm. I only take 2mg at night.

Does anyone have any other thoughts?

I have been left unable to do so many things after this episode over the winter months. U was confined to the house over October to January and still cant drive or walk far. I am really concerned.

poor you, i have some of your symptoms, weakness, tingling, inablility to drive anything over a few miles as well as weakened chest muscles when i lie down (i often find breathing difficult), and i am currently waiting tests for ms. my neuro said i have either ms or fibro, and that they both can have similar symptoms, so i find it interesting that you already have a diagnosis for fibro. I read online that fibro is often a misdiagnosis for ms. have you had a brain mri or a lumbar puncture? I would start demanding these things, if you do not feel up to it take your partner or relative with you to fight your corner, and if you dont get anywhere, u are well within your rights to request a second opinion. good luck, and i hope you feel better soon x

poor you, i have some of your symptoms, weakness, tingling, inablility to drive anything over a few miles as well as weakened chest muscles when i lie down (i often find breathing difficult), and i am currently waiting tests for ms. my neuro said i have either ms or fibro, and that they both can have similar symptoms, so i find it interesting that you already have a diagnosis for fibro. I read online that fibro is often a misdiagnosis for ms. have you had a brain mri or a lumbar puncture? I would start demanding these things, if you do not feel up to it take your partner or relative with you to fight your corner, and if you dont get anywhere, u are well within your rights to request a second opinion. good luck, and i hope you feel better soon x

I have had an MRI but that was immediately the symptoms started. So would anything have shown up? I don’t want an m.s diagnosis but I need the truth so that I can be tested if necessary. I have a fbro diagnosis from a rhematologist. He said that the arthritis tests were negative so he just said fibro. He didn’t test for pain spots or anything. I told him that I was seeing a neuro an he said good. That is what you need. I dont think diaphragm spasms are fibro related. However, my numbess and tingling came on suddenly and symmetricly as if I had been plugged into an elected socket. And then I was in bed for months. Actual weakness in my legs. I had chronic pain before but no neuro symptoms.

im not sure if anything would show up, im quite new to this world. If you are still under the care of neuro then at least that is something. I feel your pain tho, so many of us are in the same boat. Like I said, ask for a second opinion if u feel your questions arnt answered, and also ask if another mri would be possible. Ive had chronic pain and neuro symptoms for 6 years now, with almost every doctor implying i was making it up…this was all before someone finally refered me to neurology, so your not on your own. The docs must of seen loads of people like us over the years, so hopefully they will have an explanation for you soon x

Thanks joryan. Why do they think we would make this stuff up? I have not been believed too. I am going to ask for a lumbar puncture. I need to know what I am dealing with. I was told probably not m.s in the hospital as had symmetrical weakness in arms and legs. Any one else had this?

Hi Michelle, From what I have read you can have symmetry on both sides, but it wouldn’t necessarily start at the same time as one lesion could not affect both areas. My mum has fibromyalgia, and your symptoms do sound very like hers. It’s a debilitating illness and she has really struggled too. Also, drugs such as amytryptilline can cause some of the symptoms associated with ms, such as balance, dizziness, visual problems and skin numbness, so it might be worth while trying to come off them and see how the symptoms pan out. So sorry you are suffering, and I really hope you get some answers soon. Take care. J x

Thanks for this miss d. I am interested in what you have got to say. I obviously want to believe it is fibro. And yes the symmetrical symptoms are baffling. Can I ask, does your mum suffer with upper body weakness and diaphragm spasms? I can barely straighten up some days. Thanks.

You have my every sympathy, I too have been diagnosed with fibromyalgia but I am being told there is more going on. Last night around 7:00pm I had another episode of severe pain around my ribs, it was excutiating and I was still awake with it around 11:00pm. I had to prop myself up until I fell asleep. I had not exerted myself as I had been in bed all day. I get wide spread muscle spasms, which are quite different to the burning searing pain I get in my muscles both of which can strike without any warning. Are you awaiting anymore tests or appointments? Lou x

Hi Michelle, Yes she does get quite a lot if pain around her diaphragm, and she has a lot of weakness upper and lower body. Also forgot to mention that diazepam might be adding to your weakness. Have you been dx by a rheumatologist as having fibro? It might be worthwhile getting a referral to one, if you haven’t already, if the investigations for ms come back negative. Good luck! J x

I am seeing the neuro in Leeds on 17 may. He is taking a watch and wait approach. He has said he is baffled as not classic signs of m.s but he does believe something neurological is going on. I was diagnosed with fibro by a rhematologist in December. He didn’t do any tests but he diagnosed me because I have wide spread pain and no arthritis. He did tests to rule that out. Thanks for chatting to me. I am really scared. I have always been really active but now a shadow of my former self. Can’t socialize as to tired and too much stimulation is overwhelming. I also find teaching my students draining, I teach from home. It is affecting me mentally. =( please let it be fibro God. :slight_smile:

I feel so under pressure right now. I can barely feel my feet today and now my clothes touching my legs is so uncomfortable. Husband doesn’t want to hear me talking about my illness but haven’t been able to think about much else today and I am worried about the future. I dont want this and I want to be there for my children and grandchildren. I have little Elliot who is four but we are approved adopters. Really stressed today. =(=( Any other thought on my symptoms. Anyone with m.s who started like this?

Hi Michelle, take a deep breathe and try to compose yourself if you can, believe me stress won’t be helping your symptoms whatever your diagnosis. This journey can be a lonely place at times. I often shut myself away as I don’t won’t to burden those around me who I dearly love. It sounds like you have a lot going on in both of your lives right now and big decisions to make. If for no other reason than to off load, could you (and it is only a suggestion) use a diary/booknote as a sounding board. This way you could off load all you worries. Your husband can see what is happening to you without you telling him and the fact that you want to adopt says a lot about him. I do undersatnd how you feel, and the waiting game is horrible. It sounds like your nerves could be off in your skin. I had a really nasty bout of shingles 2 years ago and I couldn’t stand anything clothes, sheets touching my skin. The other sensation I get feels as is if my skin has been burnt and it is painful to touch. Remeber we all hear to listen to and support you at anytime Lou x

Thanks Lou. Yes I have the sun burnt feeling on my knee at the moment. Jus is a good guy but illness kind of separates if you are not careful. I write in a journal and pray. I am still mourning my lack of health. Thanks for your thoughtful words.

Yes, I am totally with you, I feel absolutely robbed of my life. I went on a pain management course. The first class I just walked out of in tears, I resented being there, I didn’t want to pace or do things differently, I wanted me back. Not wanting to be negative but I think the former me in a physical sense has gone.

So I have to ask if I am the same person irrespective of my symptoms, I want to say yes but I am not, I am miserable and emotional a lot of the time. However, having said that I try to do things that my health has no bearing on for example, making myself look good, I use a really nice moisturiser and look at nice clothes (window shopping on the net - I have always been a skin flint so no cahnge there and I never liked going shopping and trying on clothes). I have never skimmed on food items that I fancy and I still do that. I love Cava and always have. Whow I sound so pretentious, well why not.

My duaghter has left home and she would have anyway my health has no bearing on that. I would have hated it if she stayed for me. I miss her terribly but we still laugh as we did when she comes to visit. I quess what I am trying to say is that there is till a lot of me that has not changed, less of it but that is what I treasure. Lou x