Opinions Please

New diagnosis and before diagnosis
1

Hi, I’m new to the forum. I came across it while searching for information on a ‘trapped radial nerve’ and certain things rang true to me. I’m a nurse, I like to think I’m not a hypocondriac but you know how a little knowledge can be dangerous. I’ve just had a consultation with my Gp thats left me wondering if I’m being silly self diagnosing. Bear with me as it might be a long post.

2010 Restless legs/spasms, disturbing sleep. Saw Gp, given Carbamazepin. Symptoms resolved after ? 4 weeks.

2010 Left eye symptom of ‘net curtain’, lasted 5-10 mins.

2011 Legs aching/numb. Struggled to walk/climb stairs, legs weak,/gave way, had to sit on the stairs. Saw Dr Deepak after this, symptoms had lasted approx 4 weeks. ? Post viral symptoms. Settled after ? 6 weeks.

July 2012 - Mid morning I developed central, crushing chest pain, worse on talking/inspiration. That evening I went to A+E, it’s the first time in my life I’d ever been to A+E so that shows how scared I was. Tests showed none cardiac cause. The diagnosis was ? Musculoskeletal or Oesophageal Spasm. Given analgesia. The pain lasted for 3 days.

Sept 2012 Intermittent pins/needles left forearm, thumb, 1st and 2nd finger for approx 4 weeks, felt like ants running under the skin, initially around 6 times per day but increased to approx a dozen times per day and disturbed sleep. After approx 4 weeks made appointment with Gp. The diagnosis was ? Trapped radial nerve. I declined meds that day but after another sleepless night requested some. I was given Amitriptyline which initially gave some relief at night but none during the day.

Early October another episode of ’net curtain’ symptom left eye. Lasted a few minutes as before.

24th October - constant pins needles symptoms. Saw Gp. Given Gabapentin.

27th October - Pins and needles reverted to intermittent.

I’d read about the MS hug and wondered if that was what I’d experienced in July, along with the other symptoms so I went to speak to my Gp. She initially said even if it was MS she wondered what the purpose of getting a diagnosis would be as there is no treatment for MS anyway. She also said she didn’t think my symptoms were MS though she couldn’t guarantee it. In fairness she did agree to refer me to a neurologist to seek their opinion but said it would be a long wait. She said the eye symptoms were not classic of MS and lots of people have chest pain and the cause is never found.

Have I over reacted? I feel like I might be wasting their time now.

2

Hi Milly, I certainly think it is worth seeing a neuro and getting these symtoms checked out… although there are a whole bunch of conditions that can cause similar symptoms… but seeing a neuro will be a good start.

I’m very surprised (and somewhat annoyed) that your GP wonders what the purpose of getting a diagnosis (dx)!!! For Relapsing Remitting MS (RRMS) there certainly are treatments that can really help symptoms and cause less relapses. Even with the progressive forms of MS there are med’s that can help with symptoms… so your GP is wrong on that score.

Also I would say she is wrong in that having a dx of a chronic condition that might get worse would help you plan for the future… and just knowing what is causing the symptoms can be a great help.

Has the GP done blood tests? Symptoms such as you describe can be caused by vitamin deficiencies or by thyroid problems… all of which are easily treated.

Anyway, she has refered you to a neuro so that is a good start, and neuro will probably do blood tests.

When you next see the GP ask if she made the referal… just to be sure.

Good luck and I hope you get some answers very soon. Keep in mind what I said… there are many conditions that can cause similar symptoms so for time being there’s no need to think it is MS.

Pat x

3

Thanks for the reply Pat. I’m Coeliac, I’ve been on B12 injections and folic acid tablets for years along with Adcal for osteoporosis. The Gp did do bloods, usual routine ones including thyroid, there was so much to talk about I forgot to ask for the results but she is good at following up abnormal results so I assume they were normal.

4

Well let’s hope you see neuro soon.

Did GP test for Vitamin D? If not, ask to be tested.

Pat x

5

Major SPLUTTER! What’s the point in being diagnosed? Oh dear heavens!

There are many reasons for being diagnosed, but here are three pretty important ones, in no particular order:

  1. You know what’s wrong (and can therefore explain things to others).

  2. People with MS are automatically protected by The Equality Act, which is no small thing if you are in work and start to struggle.

  3. You can get access to MS specialist help, including disease modifying drugs (if you are RRMS and meet the criteria) which can, amongst other things, reduce relapse rates and disability.

So, if you haven’t already, please take your GP up on that offer of a neurology referral: it might not be MS, but it’s definitely better to be sure.

For what it’s worth, the net curtain symptom is one I’m familiar with although it has only ever happened to me when I have been fatigued or too hot. It lasts at most an hour or so in my case. (I have RRMS.)

Oh! And hello, and welcome to the site

Karen x

6

Hi, I too am utterly staggered at what your GP said!!! What does he think specialists are for, for goodness sake!

So, you go along to that appointment and let a specialist see what he thinks.

If the waiting list is ultra long, then maybe you`ll think about going private.

I did that in the beginning, as there was a 10 month waiting list.

It cost me £200. But I`ve seen it mentioned here, that the cost is still around the same.

Good luck.

luv Pollx

7

Many thanks for the replies, I feel a little less silly now with about the neurology referral. Karen you articulated beautifully what I felt, I had read about the treatments and thought her response was a bit flippent. She felt the ‘net curtain’ symptom was not typical of MS so interesting to hear you had it too.

Poll I have no idea how long the waiting list is but if it were 10 months I would consider what you suggest.

8

Staggered is a good choice of word regarding your gp…I would suggest you see someone else in the practice.

Net curtain is what I get at the beginning of Optic neuritis,however that then goes on to be weeks of hassle not very short lived as yours.

Everything becomes generally blurred but with some ares of normality when I have over done it though,and I put that down to the ms giving me a reminding bite at the heels to rest.

Rest assured that any advice Karen gives is good advice.

Chase that referral

Pip