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Not diagnosed

I have had various symptoms for a few years, about 18 months ago I was referred to a rheumatologist who said she could not find anything wrong. This made me feel as if she thought I was making it up and put me off returning to the gp.

i have tingling feet and sometimes hands. My legs feel heavy and sometimes it feels like I’m trying to walk through water, almost a dragging feeling. I have experienced blurred vision and have a new script for my glasses but it is still happening. I get very tired. I have trouble concentrating at times. My body aches at times more than others. I was diagnosed with asthma about 3 months ago. I have tried vitamin D tablets but they didn’t help.

I can put some of these down to caring for my special needs children but it’s getting worse and I’m pretty sure there’s something else going on.

I don’t really expect anything from this post and feel silly now I’ve written it, especially as so many people are suffering more than me. I haven’t even been diagnosed so it could be anything.

Get a MRI scan and Lumbar puncture. By doing this it will answer all your questions. Going through the not knowing phase will do you more harm than good.

It`s what I done and although I was diagnosed with MS it explained everything I was experiencing for a number of years.

At least I now know.

I thought I was just getting old.

Thank you Scudger, sounds like good advice. I have also put it down to age, I’m 45, but then I think if I have to put up with this for how ever many more years, then I’m just going to be miserable. I know I need to see a gp but I think I’m worried they think I’m making it up.

Hi Mizzymoo

Well, as you’ve said yourself, it could be anything. And if you have children with special needs, then you must have a fair amount of stress in your life, which can be the cause of loads of symptoms.

Although, you do seem to be a number of issues, that could have a neurological basis. Just be aware that MS can include many, many symptoms, which are also shared with other diagnoses.

In your position, I’d get an appointment with your GP, explain the things that you are experiencing and ask whether it’s possible to get a referral to a neurologist because you feel there could be a neurological cause. I wouldn’t tell your GP that you think it could be MS or anything else, they really don’t like us to self diagnose, or to consult Dr Google (who by the way, is a bad doctor).

If the GP is happy to refer you, then again go through the problems you’ve had over whatever time period with the neuro. It’s perfectly acceptable to take in a written list of things you’ve wondered about. Include time scales, i.e. when symptoms have occurred and how long they’ve lasted.

The neuro is likely to do a physical exam then send you for tests if they feel these are warranted. This could include an MRI scan, a lumber puncture and / or a visual evoked potential. Only after the neuro has done these tests would you be expected to have a definitive idea of what it’s not and either what it is, or what it could be.

Sue

Hi, I am new to your forum. Five weeks ago I had severe burning pain around my my right rib cage which lasted almost three weeks. The day after the pain had almost stopped the bottom of my right foot went numb. The following day I went numb from my right shoulder all the way down to my right foot. My right arm is fine. I started getting very painful spasms in my left leg also. Over two weeks later and I am still numb down my right hand side and my toes will not do what I ask them to. My GP thinks I might have ms and is having me get blood tests done on Monday to eliminate other illnesses out. Please can anyone who has had similar things happen to them tell me how long did the first bout of numbness last?

Mizzy Moo, you think too much. Stop worrying and thinking about what other people are thinking.

You need answers to all your questions. Only you can do something about it.

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I’m 30 years old and was diagnosed with fibromyalgia approx 9years ago. I had a lot of fatigue and some pain a long time before diagnosis. My GP is great but obviously this sort of things not her area of specialty. I had my spine checked and was diagnosed by a rheumatologist. I had loads of blood tests to rule out Lyme disease, lupus etc. I’ve had repeated blood tests over the years but not for some time now. I’ve always seemed to have a ‘severe’ case if fibromyalgia- it’s been very limiting for me. I’ve had extreme pain and fatigue mostly, as well as other symptoms- gastrointestinal etc. I’m not overweight and eat an OK diet. The past few years I’ve had a real increase and change in my pain/fatigue levels. I’ve exhausted all drugs and other treatments offered by gp and pain management many years ago. My elbows, hips, knees fingers and spine are always very painful. The fatigue is overwhelming. I hardly go out n can’t do much if I do venture out. I still live at home and my mum does everything for me. I get kidney pain, tingling and numbness in my legs, hands and arms. I get twitches especially in my feet and legs. I have bladder disturbances. Migraines are under control mostly. I have eyeball pain, eye socket and behind the eyes hurt a great deal. Everywhere hurts except my ears and nose to be honest… I finally- after years of trying saw a neurologist and had an mri. He did some basic tests and sent me for the mri. The results only said I had no neuro inflammation. That’s it- I’ve got to go see him again. What are the opinions of folk such as yourselves? I think it sounds like I may have MS, but feel like its such hard work trying to get help. No one seems to want to investigate or help me- I worry the neurologist is going to brush me off and send me on my way. If I do or don’t have MS I don’t know how to get it clarified. Surely this amount of pain and fatigue isn’t normal or acceptable? Please help, I’d be most grateful for any suggestions. Thank you.

I’d like to thank you all for your kind words and advice. I have made a drs app for a months time, the earliest they could fit me in. I will keep phoning for a cancellation. I am also going to write a diary of symptoms so hopefully I don’t get too muddled on the day. One of the problems is that some days are better than others and it’s Sod’s law that on the day of app I’ll be having a better day which is obviously good for me but not when I’m trying to explain.

again, thank you and I’ll post back when I have some news.

Well done you. Youre doing something positive. Thats ridiculous you have to wait a month to be seen by your doctor.

Anyway, good luck.

Check ur thyroid, that is exactly how I do when mine gets messed up!!!

Fibromyalgia causes very similar symptoms to ms. I got the name of the condition wrong when I was talking to another member about something else, but my longest standing friend, has it & when she discribe her symptoms I can totally understand that you can read ms symptoms & feel like your symptoms match. When I was going through the Dignoses journey she believed I would be Dignoseed with fibromyalgia.

What I haven’t got an angle on is how they Dignoses fibromyal, so I don’t know if it can be Dignosesed in error with it really being ms. But if your Dignoses does change it would be good to know.