Hi I have had various health problems over the past 8 years. (Migraines, cluster and thunder clap headaches). last few years have hands cramping, tiredness, muscle pain, burning lower legs and few, severe feet and legs cramps, tightness in lower rib cage, feeling cold water running in ankles/legs, spot of vibrating in thigh. I thought I might have fibromyalgia. GP has now referred me to neurologist to 'rule out ms'. My sister and cousin both have ms. I am not afraid I just would like a diagnosis but know it can take years. Can anyone please advise if my symptoms are more fibro or ms? Thank you.
Hi.
So I have my appointment. My doctor wrote that it's urgent, so I am being sent to a hospital quite far away, because the local hospitals has a 6 months plus waiting list. I'm being seen in July, the 12th. There was a closer date, but it was during one of my exams, which I can't miss.
What can I expect? This is my first appointment with a neurologist, though I have had an MRI before because about 15 years ago they thought I was epileptic. They found something on my brain then which resembles a lesion, but nothing ever came of it and I was diagnosed with type one diabetes which kind of took over.
All my symptoms after I've put down to diabetes, or over working, or whatever. (I did wrote all this in the introduction). But I am on the insulin pump now so I don't hypo all the time like I used to, but I still get dizzy spells and vertigo. And I've been tested for damage to nerves from diabetes, and my pulse and reactions and that are fine. Diabetic consultant says I haven't been diabetic long enough or had bad enough control to cause damage, and the tiny blip on my eye (one burst blood vessel) wont cause my blurry vision.
Thing is, I've been scared to tell anyone that I've been getting numbness, pins and needles, and pain, in my right arm and hand, because I was scared I would be told it's diabetic damage.
I've been seen by rheumatology because they thought I had rheumatoid arthritis, but the only thing the rheumatology people found was that I'm hypermobile. They did point out that by grip is weak, but when I pointed out my claw hand (my fingers wont straighten in my right hand unless I force them to by my other hand) they just said they didn't know what caused it and gave me some exercises to do (which make it worse).
A few years ago I was diagnosed with trigenimal neuralgia. But they did a scan of my head to look for nerves touching blood vessels and found nothing. I never got to see a specialist for that, and I didn't really push it because I decided it was probably tooth pain (it went to my forehead but I figured it was probably caused by tooth ache). My GP wasn't so sure. She's lovely, and really listened to my symptoms. All the stuff, blurry vision, hand issues etc, tends to be on my right side mostly.
I fall over a lot. Sometimes it's because I trip. Sometimes I have no clue.
I have no balance whatsoever. My husband is doing a degree is psychology and so has to do some neurology in it. He has done some of the tests onme already like getting me to stand still then close my eyes. Apparently I sway, but last week or so I actually fall over. And I can't do the putting one foot in front of the other.
Anyway, what can I expect from this first appointment? And what do I do?
Schedule
Hi.
I'm a type one diabetic with other autoimmune diseases, so I was reluctant to go to my doctor with the numbness because I was concerned she would say it's diabetes related. But it isn't.
When I was about 19 they found an abnormality on my brain. They called it a mass on my forth ventricle, but no follow up was done on it and it was about the same time I got diagnosed with diabetes, so that took priority.
I've been being seen by rheumatology who tell me I have joint hypermobility, but that doesn't explain the weakness I feel and the numbness.
About 6 or 7 years ago I was diagnosed with trigenimal neuralgia. My doctor believes this to be a potential sign of MS.
I had an appointment with her today and she has decided to refer me to neurology.
So, just really wanted to know what to expect.
Ok, nothing to see here...I'm feeling sorry for myself, so just need to offload :)
The worst of my symptoms started 6 months ago. It took 3 months to convince a doctor that, yes, this was serious, and then 3 months from referral to finally seeing a neurologist.
The neurologist was running 30 mins late, it was obvious he was trying to rush through and make up time. He hadn't read my notes, didn't have a clue what I was there for.
Within 15 mins he'd declared that I was fine ('You seem to be walking ok') and that I definitely didn't have 'anything serious like ms' and that he was going to discharge me. He wasn't even watching most of the time he was performing the tests. :/
When I described the mobility issues I'd had and how for the first time in months I was finally now able to leave the house on my own and drive, he said 'Well, you seem to be getting better, it's not a neurological problem'. He declared that my 24/7 muscle tightness/spasms couldn't be neurological. I saw him write down 'stress' on his notes :/ ( stress can contribute to disease, but I've not seen it cause a person to lose their pincer grip or be too uncoordinated to walk!) His only recommendation ws that I should exercise little and often. He asked how far I could walk and I said to the corner shop, 3 minutes away. He said ' well do that several times a day'. { sigh}
As he was trying to shove me the discharge paper, I kept pushing him by saying 'well what about x symptom...what about this?' In the end he conceded to me having two blood tests (one of which the doctor had already done, twice). When I pushed him again he begrudgingly said 'Oh, well, I suppose it could be something like fibromyalgia, I'll write a note to your doctor.' And with that, he ushered me out of the door.
I felt so let down, I ended up pouring out my frustration to the nurse doing the blood test, whose sympathy and kindness was probably the only reason I didn't leave the hospital sobbing.
To make matters worse, I phoned straightaway to get an appt with the doctor I've been seeing for the past 6 months, only to find out that they've left the surgery. Feel like I'm back where I started 6 months ago.
So...what do folks recommend I do next? I never want to see that neurologist again (I can't anyway, as he's discharged me!). I've had 6 batches of blood tests, which have shown nothing and excluded quite a few other possible diseases. I never use the doctors unless it's serious (I.e. cant walk/can't breathe). I know I'm not imagining things. MS or not, most of my symptoms could well be explained by something neurological in origin. And yes, I might be a little better, but I'm not a fraction of the person I was 7 months ago. My(ex) doctor said he couldn't authorise a MRI, only via the neurologist.
Apologies for whinge. Having to put a brave face on for family, but needed to offload.
Moving on...
Went to the neuro and I will be getting another MRI in the fall because he didn't like the amount of spots on my last one. And he might take me off tecfidera and put meon some once a month iv treatment.
I'm thinking he suspects something more than RRMS.
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