misdiagnosis?

New diagnosis and before diagnosis
1

Hello Everyone!

New here and just seeking advice.

2 1/2 years ago I moved house and suddenly developed severe leg pain, burning feet, calves and knees, with legs that no longer would do what I asked of them. Ended up using a stick with my left leg dragging around. I was totally fatigued and had lots of random symptoms, blurred vision, tingling and nub feet/hands. G.P diagnosed osteoarthritis and cartilidge tears in both knees, but right knee was worse than right, despite my left leg being worse everyday. Physio diagnosed plantar fasciatis and busrsitis (excuse spelling) but I still felt like these couldn’t explain how my legs just felt like they were no longer my own, like they just did there own thing. Some days I’d wake up and could barely walk without support and only to the car and back.

Roll on approx 6 weeks and I start having cognitive issues, brain fog, forgetfulness, being distracted, tingling in hands, feet and muscle twitches in face, hand twitches and in different parts of body. Sent to Neuro who diagnosed fibromyalgia. Looking at notes, she also identified I had no reflexes in legs and a positive hoffman sign, which she never discussed with me. She recommended to put me on pregbalin, GP ignored it and put me on amytriptilline. I also have high blood pressure.

Since this, issues been ongoing, then in September I had a major attack/relapse, which lasted 6 weeks, it was triggered by somebody having an argument with me, they actually verbally abused me with no cause and it led to me being unable to walk, my right arm stopping working, and pain down my neck and back. The pain spread over back like band of burning pain, the worst pain ever. I had shooting pains up my neck, fatigue, muscle twitches and GP said fibro flare up and prescribed strong painkillers, which I did not have a goo reaction with.

Since then, my mobility is still poor, have days where I feel electrically charged, literally feel like i’m buzzing, get feelings like being prodded with a knitting needle in random places, tingling, had a bout of tinnitus, swallowing issues and so forth.

3 days ago I started with right arm not working again, band of burning pain in top outside of arm, neck and back pain (warm to touch) that spread again down. Has knocked me off my feet and is only relieved when back is lying on something. i also had a choking fit as throat stopped working proper, allowing a drink to go down wrong hole and took 2 hours of coughing to get back up-very scary. Next day i nearly choked on a sweet for same reason so I have to physically think about how I swallow to make sure it does not happen. I am out of action today, totally fatigued, in and out of sleep, so tired, blurry vision and shooting pain up neck when move forward.

I’m beginning to think this is not fibromyalgia and wondering if MS may be more likley. I am going to ask GP to raise further neuro tests, but with COVID, i’m going to have to wait. Thinking about going private.

Just wondered what you guys think, anyone diagnosed first with Fibro?

2

Hi betty, yeh your symptoms do sound like and could be MS. Fibro is often blamed for MS, as are other things. I was wrongly diagnosed with HSP when it was MS.

I think you do need to see a neuro.

Boudsx

3

Thanks for replying Boudica, The first neuro I saw was very wishy washy in her diagnosis, I don’t think its MS, could be fibro, telling me just go on a vegan diet and sure this would help. We only had this one neuro in the whole of Cumbria and had to wait a year to see and travel over 30 miles to see her. She was a specialist in headaches and insomnia and in all honesty was nice enough but did feel a bit fobbed off. I’m going to pay for a private MRI, to check if there are any lesions, at least this will rule in or out MS as a possibility. -)

4

I’m pretty sure we’ve got more than one neurologist in Cumbria now. I see one in the south of the county and he’s an MS specialist. I’ve got a lot of time for him. If you would like details, pm me. Moira

5

Hi again. An MRI done privately is going to cost a heck of a lot of money and then you`ll need to pay a neuro to discuss it.

Trouble is, sweetheart, MS lesions dont always show on an MRI. I had 5 and went to Liverpool to see a top neuro who spotted lesions on my cervical and thoracic spine. The previous 4 MRIs/neuros saw nothing.

I got my diagnosis of Spinal PPMS 22 years after onset of symptoms.

Maybe take Moirah up on her offer.

Boudsx

6

Betty Blue

Your paragraph where you told of someone verbally abusing you struck a chord.

The house next door was owned by a private landlord, who introduced himself and seemed a sound bloke, a former fireman.

I introduced myself to the first tenants, a lovely couple.

following my diagnosis in 2008 and 3 tenants later. I was disturbed early one morning with a lot of banging downstairs. Then I heard shouting. By the time I got downstairs I could see a woman banging on the living room window and screaming that she was going to put the F**king window in.

My 23 year old son was shouting back at her. She kept saying “I pay rent!” My son said “We own this place”.

Following that event every time I saw her she would glare at me and even her mum would glare and tut.

It really took it out of me (my sister lived 3 doors past her and I felt uneasy if i wanted to call round).

She was known within the family as Psycho Tw**.

I found out after she had moved house that she was always drunk although she never went in pubs.

Very stressful and we know that stress is bad for MS.

Just wrote this long reply to let you know that i have first hand experience of nasty verbal abuse.

7

Hi Bouds and thanks for the reply.

I’ve taken Moirah up on her offer and going to see if i can arrange to see the specialist MS consultant.

I’m a little at the end of my tether today as I’m well into another falre up/relapse and have had no sleep for 3 nights, as have gripping pain in back/breastbone, shouder and right arm and every time I’m about to go to sleep, I’m woke ny a fast exhalation of ai. It feels like different muscles are spasming. I had to go post a letter this morning and broke down in tears after getting back in car form postbox, as my arm was so weak and could not support myself on stick. I had a good cry, came home and got on with it, I have to, have kids and at moment, no support, thanks to covid.

I just want to know what it is, so I can get some help, as things have progressed in 2 years, with arms and now one arm not working properly.

Thanks for replying lovely x

8

Thanks for replyig -that sounds awful! It really is so stressful to be abused like that, some people sadly just don’t care. I have a caravan, which me and the kids stay at when we can, it was the warden who abused me, telling me I was not allowed to bring my kids in school time (during the week), stating it was law, I was homeschooling due to Covid in between first and second lockdown when could travel!!! He was a bully and was so bad. I pay near £3000 a year for the caravan to be sited and go so I can see family and relax. Only after the site took my money did I find out it used to be an adult only site and a woman on first day after I arrived complained about my kids walking in the middle of the field near her caravan. My kids were well behaved and kept them only in front of my caravan after that. The warden obviously was trying to intimidate me into staying away, with kids just coming at the weekend. I was so annoyed and upset, as kids had done nothing wrong.

I reported him to holiday company and despite many phone calls, did not even receive an apology. Now the wardens ignore me, won’t speak to me and bad atmosphere. £3000 to be treated like that. Defeated the point of getitng the caravan really!

Hop you’re managing with Covid and MS ok lovely x

9

My neuro is based in Barrow too, probably the same consultant, he’s the lead for the area. He’s great, one of the best consultants I’ve ever had. I’ve seen some of his colleagues over the years that aren’t as good.