Feeling just a bit desperate.....

New diagnosis and before diagnosis
1

I’e been losing the strength in my legs since around April this year and my GP and husband, who is a doctor, suspect MS. But I’ve had an MRI and lumbar puncture and the neuro consultant is convinced that whatever I have it isn’t MS because the typical lesions are not showing up. The MRI was of my brain and spine but was taken without a contrast. The neuro has told me that I may lose the use of my legs but that he cannot find a ‘treatable’ cause, although there are ‘neurological signs’.

I’m at a loss as to what to do next and how to cope with no diagnosis and such a poor prognosis. Everything I enjoy in life requires me to walk. A year ago I was riding a horse five days a week and walking dogs for miles. Now I’m exhausted if I manage 20 yards with the help of a stick!! I can’t believe this is happening to me but however hard I try I can’t get myself ‘right’. I get tired very quickly, an awful heavy tiredness, and seem to spend most of the day in bed. I have almost constant cramping pains in my calves. Over the period I’ve been seeing the neuro the reflexes have disappeared from my ankles and my knees. I have little sensation in my feet, which are constantly cold, and no proprioception.

What do I do now?

2

The brain controls every movement; nothing is autonomous but there are many automatic systems. Every instruction runs along cables called nerves it’s when there’s damage e. g. a lesion stopping the instruction from the brain or causing it run slower.

The spine is more or less a thin; bony; flexible tube that carries millions of nerves so very tightly packed sometimes a lesion/s can hide. Although an instruction comes from the brain a lesion/s can disturb functions as on this map http://www.makoa.org/scimap.htm

The NHS use mainly 1.5 Tesla Scanners. You need at least a 3 T to get a decent resolution otherwise those pesky lesions could not show on your MRI.

Hope this helps, good luck

George

3

Sounds like you might need to start looking into less common conditions, e.g. genetic (anyone in your family with weird symptoms?), metabolic, neuromuscular,… Actually, as it’s a quick onset, I think metabolic would be ruled out (?), but genetic or neuromuscular are definite possibilities. Can your hubby pull some strings to get you an urgent neuromuscular referral?

Btw:

The cold feet do make it sound like it isn’t MS - our cold feet tend to feel cold to us, but are warm to the touch.

Contrast only really makes a difference if the MRI scans are done very soon after the start of symptoms (some argument about exactly how long, but about 6 weeks).

Good luck!

Karen x

4

My feet feel cold to me, they feel as though they are ‘freezing’ but my husband says they are the same temperature as the rest of my body.

In the past week I’ve started getting horrible cramps down the calves of both legs.

I just didn’t believe things like this could happen without at least getting a diagnosis! The neuro seemed perfectly happy to send me on my way with the news that I ‘might lose the use of my legs’ but that nothing could be done to help me.

My situation is complicated by the fact that I fractured my spine a couple of years ago, although I was lucky and suffered no damage to the spinal cord. The spinal surgeon is confident that there is no pressure on the cord (although a radiologist thought there might be). I’d do anything to have my old life back.

5

If the temperature of your feet is actually normal, then the cold feeling has to be neurological. I think it’s plain wrong for the neuro to treat you that way. Please get a second opinion - and look into a neuromuscular referral too? Kx

6

Friday it sounds like how I started in March with cold, numb feet and progressively lost almost all power and strength in legs.

The pain in my legs and arms was EXCRUCIATING, I saw a marvellous neuro who I have great faith in and got a diagnosis of transverse myelitis.

I was just pulling round and regaining strength in July when I had another “episode” or relapse and fresh MRI’s of the brain and cervical spine were done and I am awaiting results.

I’m glad to say I am really on the mend now…though a long way off going back to work.

I agree with Karen (Rizzo) on a second opinion and if you can afford a private consultation (can really speed the process up) …ask around on here for recommendations in your area. It really is scary so I am very sorry for you.

Hope things start to improve for you soon,

Gillian

7

Hi Friday, I identify with the way you are feeling now.

My problems began when i was 45…I am 60 on Monday. the first thing I noticed was a very heavy left leg,followed by foot drop and numerous falls.

Then the spasms came…arms first, then legs.

The bladder and bowel accidents happened often.

I saw my first neuro privately, as the NHS waiting list was 10 months. He gave me a good examination, followed by lots of questions. This was his verdict;

There is something very wrong with your left leg. There are signs of the same in your right leg. i dont know what is wrong with you, but it wont get better. how do you get your head around a statement like that?

Since then I`ve had 5 MRIs, 2 LPs, 2 EMG s, other tests and gallons of blood taken. Nothing proves PPMS…but my clinical presentation is like PPMS.

ive been tested for lupus, Hughes, HIV, I think also Lymes, but I need to check that out again, as I was attacked by a tick when I was 5. Ive only just learned what Lyme`s is.

There is a possibility I may have a genetic condition called hereditary Spastic Paraplegia.

I am a full time wheelchair user, and also use a hoist at home.

I am now in my 14th year of whatever it is ive got. i was due to get the results of my recent LP in Oct, but the appointment has been cancelled. i dont know when my next one will be.

My legs and feet are always cold…like blocks of ice when i` go out.

I take baclofen for spasms, amitriptyline for nerve pain and quinine for restless legs.

Like you, I have a huge ? on my forehead.

luv Pollx

8

What a horrible situation for you - terrifying and frustrating in equal measure, by the sound of it. I agree with others who suggest a second opinion - from what you say, the neurologist sounds like a bit of a weary willy, and someone who shows a bit more enthusiasm for getting to the bottom of your problems would be nice.

Good luck with it all.

Alison

x

9

Thanks for the replies. I’ve now got an appointment at the National Hospital in Queen’s Square,London. It will be a long trip but I hope to goodness I get some answers. My mobility is reducing as each week passes and I cannot bear the idea of just watching it happen. I don’t know how to cope with such a dramatic change in my lifestyle.

10

I know how you feel I got told I had Demyelination from the MRI. However spent 3 hrs waiting to be seen by the neuro only to be told" I have not seen your MRI so it may be just a storm in a tea cup"! She said chill till Tuesday ( today ), then see what happens…Symptoms are awful spasms, stiffness, memory probs and I cant stop crying…

Jan

11

I know how you feel I got told I had Demyelination from the MRI. However spent 3 hrs waiting to be seen by the neuro only to be told" I have not seen your MRI so it may be just a storm in a tea cup"! She said chill till Tuesday ( today ), then see what happens…Symptoms are awful spasms, stiffness, memory probs and I cant stop crying…

Jan

12

I know how you feel I got told I had Demyelination from the MRI. However spent 3 hrs waiting to be seen by the neuro only to be told" I have not seen your MRI so it may be just a storm in a tea cup"! She said chill till Tuesday ( today ), then see what happens…Symptoms are awful spasms, stiffness, memory probs and I cant stop crying…

Jan