I’m not even sure where to begin.
I have type one diabetes, endometriosis, carpel tunnel in both hands and wrists, and gastroperisis. I’m going for a biopsy next week to test for cancer, and now I’ve gotten a diagnosis for ms. I’m just sort of in shock, really, because I really wasn’t expecting it. I thought I had a brain tumour or something.
I don’t think it’s really sunk in yet, like it hasn’t hit me. I currently have headaches, backache, memory loss, slurring of speech and mixing of words all the time and occasionally have spasms in my legs and feet, pins and needles in my feet, legs and hands and cramps as well. I have extreme fatigue all of the time, no matter how much sleep i get. What do i do now? I mean, is there anything I should be doing? I can’t even think straight. There’s no support groups in my area, and I checked. I have no friends or family and my husband is leaving so I have no support network.
Thanks for any help.
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Well it seems like your in a pretty low place at the moment slimanisarah280. I’m sorry to hear that your husband is leaving you, especially at a time when you probably need him the most. All those symptoms you describe regarding the ms I can empathise with as I have had them on and off over many years now. They come and go. Although I can’t comment on all your ailments and illnesses but I can empathise with the lack of support being in a similar situation regarding friends or family. There’s a lack of support groups where I live too. I’m talking about places where you can physically attend. I used to attend one before COVID hit but it never reopened again, unfortunately. And I do miss that group. I think it depends on where you live and I live in a fairly rural area. I have had carpel tunnel in both my hands and I did have the operation for that. In my experience I wouldn’t have it again because I have not got the strength in my hands now. I find it hard to undo bottles and jars nowadays. I’ve also had cancer. Has an operation last year to have it cut out which they deemed a success as they believe that they removed all the tumour and it hadn’t spread anywhere else. Been having regular blood tests which so far have not detected any signs of the cancer returning. My next blood test is due next month. You’ve got to take one day at a time. Try to find out as much as you can about any available treatment and medications that may help you. Being firm with drs and other health professionals. Don’t let them bully you into something if you’re not sure. Currently my ms is on an even keel in the main. I am on a course of medication for muscle tightness.. spasticity. That is improving albeit slowly..or too slow for my liking I ought to say but, you can’t rush these things as it’ll take the time that’s needed. I have trouble with speech and often can’t find the word I’m looking for and also have trouble pronouncing it when I do know the word I want. I seem to frequently have trouble swallowing now too. That’s horrible at times. I’ve had trouble with my bowels at times.. too frequent really. I don’t normally tell anyone about any of it as I find it embarrassing and really I probably shouldn’t: I’ve got MS and these things are part and parcel of the package. If other people have any problems with it then that’s their problem to sort out. Not mine. Don’t be hard on yourself: be kind to yourself. Yes, you might have to be a bit pushy at times with not just your GP but other health professionals too. Just be polite and firm with them. And rest up if you are feeling tired or fatigued. Other stuff can wait. Wishing you well and hopefully you’ll get some positive news regarding your cancer biopsy and it might not be cancer at all.
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Do your spasms come with tingling and a prickly on and off burning sensation? I thought I had a uti but urgent care ruled that out. Thank you
I have spasms in my legs and hands. I have pins and needles in my hands and feet. I dont have any burning sensation but my feet have gone completely numb sometimes.
Thank god you were able to get the help you needed for your cancer. I was meant to have a biopsy done about 3 months ago but the doctor cancelled it because she claimed she was concerned about my mental health due to my current separation. Was an absolute joke. Had to put in a complaint and be passed to another doctor. I also have mind fog and mixing of words and letters and I’m having trouble reading. I have my symptoms all the time now, so the neurologist thinks I may be stage 2. I had a lumbar puncture about 2 weeks ago, to confirm what stage I’m at. I’m in a pretty rural area as well. Would be nice to go somewhere and see people face to face and talk but nothing is available anywhere near me unfortunately.
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Hi @slimanisarah280 , you certainly have your problems to face. Do you have an MS nurse ? She/he should be able to help with some of your symptoms and have you started on a disease modifying drug?
( when constipation is bad I get through a fair amount of Laxido)
Also have you looked for any MS Society groups in your area?
Hi, no i don’t. I was referred to the ms team but was told I wasn’t severe enough so instead I was referred to specific specialists but I’ve been told I could be waiting more than a year. I’ve been having a hard time trying to get any help.
Must say that I’m puzzled at the cancellation of a biopsy because of mental health concerns! Are you experiencing some mental health condition and if so are you getting treatment for that?
when you say your neurologist says you may be at stage 2 , I take it that you mean your hospital oncologist/ cancer specialist and you must be soon to start treatment for cancer?
My wife has not long finished treatment for endometrial cancer. One thing that I certainly recommend is finding out if there are any cancer patients groups in your area and / or getting on to the MacMillan online forums and groups
They tell me I can’t start treatment for cancer until the biopsy has been done. I haven’t received an appointment yet.
I have depression and anxiety, which I speak to a counsellor for.
Sorry, I meant stage 2 for ms. Which means I have the symptoms all of the time.
I had to look up. Stage 2 MS which is see if more usually called Secondary Progressive. I’m still puzzled though, if your neurologist is saying stage 2 secondary progressive then why hasn’t he/ she started you on a treatment? If you have had an MS diagnosis then you are put on a treatment drug.
I don’t think that that’s necessarily true @Hank_Dogs about being offered any kind of treatment drug. Although I see where you’re coming from as many people do seem to think that it’s a “given” they’re going to be offered a DMD.
Like yourself my ms diagnosis was a good way back now but, there was a couple of different types of treatments available then as far as I could see. I’ve never been offered anything. And I know that there’s going to be several people in my age demographic who will or perhaps have been offered them but, I think that horse has long bolted for me! And please, don’t take it that I’m complaining about it. I’m just saying it as it is. At least as far as it concerns me.
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Hi @Freshairman . Givthat you have had a number of new lesions showing on your brain I think you should most definitely ask why you aren’t one any treatment! I am sure that as my MS Nurse said my MS is slowly progressing Ie secondary progressive but again as my MS Nurse said people with SPMS can still get new relapses and lesions so I I am being kept on my treatment ( Avonex). If I were you I would be asking lots of questions about why I’m not getting any DMT
Certainly in @slimanisarah280 case she should be asking questions
@Hank_Dogs. It sounds so simple doesn’t it? At least you put it simply. It was about a year ago when I last saw my neurologist. Then she wanted a new MRI scan to see what’s what, because the last one was several years ago. It took quite a while to get those results as you might remember. And although I now know that there is several new lesions, I’m still nonethewiser how many and how old they might be and this after I tried to find out from her. My GP wrote to her and also my ms nurse wrote a letter. The neurologist didn’t give any further information to any of us! Well, apart from one thing. She said that she didn’t know! What? She’s the Dr who ordered the scan. Surely she ought to know or at least ask the radiologist for that information? Anyway at the bottom of the letter she said that I would have to wait until my next appointment. That’s actually due around about now. Unfortunately I haven’t got a date as of yet.
If anyone has a good neurologist, GP or ms nurse. Don’t ever let them go. Keep a tight hold of them. I’m sure that there’s plenty of us who do have them. As well as I’m certain that there’s more than a handful of us who don’t!
Your experience does sound pretty dire @Freshairman . I get a letter from my neurologist after each of my annual MRI scans. Usually takes a few weeks to arrive and this year was different in that I just got a letter about an appointment with the neurologist- turns out my January scan showed a new lesion.
There is most definitely a need for some sort of regulation of the care of MS patients with standards on treatment including keeping patients fully informed etc.
P.S. kind of ironic in a way. You have been told you have newish lesions but have to wait for a regular appointment to find out more and if anything is to happen, whereas I just got a letter saying I have an appointment with the neurologist but no reason given ( I had to phone the Nurse to ask what the appointment is for - new lesion but I still don’t know exactly what is to be discussed at the appointment).
All kind of reflects the old joke about what is the difference between medical consultants and God? God doesn’t think he is a consultant whereas consultants etc
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I live in a fairly rural area myself, @slimanisarah280 . 25 miles approx to the hospital I attend hospital for appointments.
And it’s the same with ms groups around here too. I might be wrong but I think that I remember reading something about ms groups and that is that there’s only something in the region of 250 throughout the UK. Which probably isn’t a lot all considered. There’s a sparsity around here that’s for sure. The nearest one which coincidentally was about the same distance as the hospital closed its face to face groups years ago and is now online only and it’s not the way I want to go.
That sounds incredibly frustrating, especially when it interrupts your rest. It might be worth discussing with your MS nurse to see if a change in nighttime positioning or a slight adjustment to your evening routine could help ease the tension in that area.
I don’t have a nurse, I don’t have anyone. I keep being passed from person to person. I saw a neurologist in November and she agreed to put in referrals for help, then in January I received an appointment with another neurologist, having the exact same appointment, same questions, same everything. It was ridiculous. The first neurologist got all of my details wrong and didn’t put any referrals through. Now I’m just waiting for them to give me some sort of help. I’ve got no one helping me at all. I try to get in touch with the neurologist, I get told he’s not available and to speak to gp, I speak to the gp and they keep fobbing me off or telling me to speak to neurologist. I’ve had enough at this point.