Multiple sclerosis or MG ?

[naafi]

20 years ago after major surgery I developed weakness in legs, double vision, urinary retension. Could walk normal some times and other times my legs would just buckle under me for any thing from minits to weeks. I get pins and needles at times in both arms and legs.

Ms was suspected. Same symptoms remained for all these years, I have since developed, weakness of arms, severe muscles cramps in legs, arms, around rib area, get very exausted when trying to do anything, so become breathless. I start the day usualy fine, but after I have been up about 2 hours the symptoms come on and get worse. I find I feel it is an effort to breath some times and I get very dizzy and disorientated, this usualy passes after a while. Then it comes on again with variouse activities. I can not hold my arms up above my head for any period of time as they become too heavy. I am at times incontinent and at other times in urinary retension.





I have had negative MRI's and spinal taps etc. All bloods are normal.

I do have diagnosed Slight asthma and am a smoker trying to stop. I am in the menopause and am on HRT, and have been for 3 years.



I give up with our GP's as they say that it is in my head. I have seen a pyciatrist and pycologist and both have told me that I have no problems in that respect and should find a good nurologist, my GP will not refer me. He says to get on with my life. HOW!!! I am living in constant discomfort and distress now due to daily symptoms.

What could this be as both MS and MG have been suggested but only MS tested for and NOt proven. Could it be MG?

[CCF-Neuro-M.D.-JT]

If it was myasthenia gravis, I would suspect that you'd be much worse after all this time going untreated. To definitively rule that out, specialized EMG testing and bloodwork to check for antibodies should be done.  MRI of the cervical and thoracic spine to make sure there's nothing going on with the spinal cord should also be checked if not already done. Finally, if you're having weakness and cramps, an EMG to look for an underlying muscular disease may be done.



I'm not sure there's one disease that can explain all of your symptoms, but I agree with you that you should be seen by a neurologist.  Talk to your insurance company about the possibility of coverage for a self referral if your GP is not being helpful. Good luck.

[tlpounds]

You say that MS was tested, but not proven.  Are you saying that there was no significant white matter on your MRI, and no bands found on your spinal tap?  Does your insurance require you go be referred to a neurologist in order for it to pay?  I know that many neuros don't require a referral, but you'll have to be ready to wait several months for an appointment.  If you do not feel confident with your GP and it is affecting your daily life, I would suggest (if you are required to have a referral) that you see another GP and get a referral.  Things that affect your daily life need to be taken care of and you need to make sure a doctor takes you seriously.  I would advise you to take immediate action.  I'm not a doctor, but my GP didn't believe there was anything wrong with me, and I went to the neurologist and was found to have MS verified by both the MRI and spinal tap.  Good luck!

[naafi]

Hi,

In answer to your questions, No white matter was found or what ever on the MRI and no abnormality in the spinal tap.

As I am in the UK, Insurers do not come in to it, but the National Health Service tightened it's belt a few years ago, so GP's will only spend on certain, tests, drugs or treatments. They have a budget for each GP's services and he or she has to stick within that budget.

This means that with some long term conditions you either get No treatment or tests, or the cheapest alternative. Unless you have pots of savings of your own, you have had it.The costs of referals etc will mainly only go to those with conditions that they know they can ultimately treat and are not long term. People with MS who would like and should have the latest treatments, on the whole No one hardly can have it, unless they pay for the drug themselves. There has been uproar here over it.



I did try to see a specialist privately, but they have to still have a referal, and one was not forth coming.

I did get offerd steroid treatment privatly but could not afford the costs involved.



So I am still stuck in the same boat!!!! HELP !!!!!

[jw423]

Hi there;

I'm new to this site but find it quite interesting.

I too have many of your symptoms plus many more for the past five years. I am now on my third neurologist. After seeing her this past week, she seem to feel that my problem may be cervical myelopathy. ( I have so many various symptoms and other medical problems that defining symptoms for a particulr disorder with so many cross-ovr symptoms is quite difficult.) After some research via the internet, I think she may be on to something. I am scheduled for another Cervical MRI next week to compare to one from 2000. I hope you can find some info on this and other similar problems and present them to your doctor, perhaps persuading him/her that further testing may be necessary.

  I live in New York and I had to insist on an MRI from my past Neurologist, feeling sure I had a problem with my neck. He resisted and said it wasn't needed for three of my four visits until he angryly gave in to shut me up.(I did insist nicely but persistenly. He wasn't happy when I was proved correct and he would not co-operate with my other doctors. He also said there was no problems and that I should not have more than a headache once in a while or minor dizziness. My Brain scan showed some plaque and abnormalities in both right and left side of the brain..My MRI showed a herniated disc, a bulging disc, constiction of the spinal cord among many other abnormalities.  Thus, I had to find another Neurologist.. This meant another Primary who gave me the referral to my new Neurologist.  My hope is that you may be able to see another Primary doctor who is more open minded and not offended if you offer other *possible* diagnosis' that you have discovered by your own researching!  

   My prayers are with you.

[Judee]

This site just popped up on my screen.  So I must have been meant to be here.

Having many of the same symptoms listed here.  I was diagnosised with Fibromyalgia in 2001. Proi to all the symptoms which came on gradually. I ran a successful business and traveled extensively.  I am a 48 yr old female who was very athletic and walked 5 miles a day.  Now I do good to walk from the bed to the couch.  I recently had an MRI and full bone scan.  The MRI reveiled some white matter on my front left temperal lobe.  My Internal Medicine doctor said it was nothing.  The bone scan showed degenerative something with rhemotiod arthritis in my lower back.



I'm not sure they have hit on the correct diagnosis yet.  I have a rather unusual medical history:



age 4 double phnemonia (doctors thought polio - couldn't walk)

    8 tonsillectomy

   15 thyroid surgery

   20 kidney stones

   21 lyme disease

   23 gallbladder surgery

   29 kidney stones

   31 paracarditis

   33 migraine headaches (started after auto accident)

   38 hystorectomy

   39 kidney stones

   41 bacterial meningitis

   42 post tramatic stress + symptoms from auto accident

   43 hives

43-45 major dental surgery abcess on one tooth

   46 diagnosised with Fibromyalgia

   47 Restless Leg Syndrome

   48 High Blood Pressure



Have any of you had similar histories.  I am trying to pin point what might have brought this on.



I have also been given some information on Post-Polio.  This Undiagnosed Childhood Polio cause Chronic