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Avatar universal

Multiple sclerosis or MG ?

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?

11 Responses
Avatar universal
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.
Avatar universal
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!
Avatar universal
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 !!!!!
Avatar universal
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.
Avatar universal
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 Fatigue Syndrome in Women Baby Boomers. I am anxious to talk to anyone who has knowledge of or has been diagnosises with this.

One doctor has said that many patients with Fibromyalgia also
have MS.  I have a good friend with MS and Fibro.  We have mirror symptoms.

Please over look typos.

Thanks for being here...any comments are appriciated.
Judee
Avatar universal
Hi Judee,

You sound just like me.
Yes I have had variouse things in the past. If this lists helps it would be interesting to compare notes.

6 months old double phnemonia.
5 years, kidney stones,
13 years, Glandular Fever,
23,years Apendicitis and subsequent emergency  removal.
24 years, Pelvic Inflamitory disease,
24 years, Salomela food poisoning.
24 years, Very large Ovarian Tumour and immediate removal of right Ovary,
24 years to 27 years, Unknown Inflamitory disease of the Pelvis, treated with Steroids and other antibiotics via I.V.
27 years, Hysterectomy, leaving just left ovary, complicated by disease of pelvis.
44 years, Another very large tumour on left ovary, removal of tumour and ovary as emergency.

Now been disagnosed as having restless legs syndrome and cervical spondilitis as well.

I feel there has to be a connection some where in all of this. Why should we suffer. Could it be that there is a common trigger here.

I would love to hear from you so we may talk further, you may e-mail me at ***@**** if you wish, and any one else who is suffering the same fate.
45 years, In to the menopause, been on HRT every since.

Avatar universal
HAVE YOU HEARD OF ANY NEW MEDICINE TO HELP MS?
Avatar universal
Hi All

I don't know what MG is, but I am hoping not to have MS at the end of the day, I am going for my first MRI scan cervical area and have waited over a year to get this far, having suffered with neck pain for 14 years. I think I have Cervical Spondylotic Myelopathy ot Thoracic Outlet Syndrome as I have severe permanent pain at the C7/T1 area which shoots pain out to my shoulder, down my fingers which are now spread out, turned up at the ends and painful. I have left side weakness including my leg and some bladder problems from time to time. Dizziness and stiffness of the neck. To mention but a few symptoms. Like most of you the medical people think I am away with the fairies, either a moaner with a little muscle pain or a complete crack pot. I say we are sane and they are mad. None of them listen, not really listen. When I told an orthopeadic surgeon I had bilateral cervical ribs she said that it was common and most people have no problems with them to go away and get more exercise. They think we are depressed, but they don't realise that it is frustration that leads to depression. The only time I get depressed is when I think about how shamlessly they treat their patients. If I don't get a proper diagnosis by summer I will use my savings and go private. I don't trust the NHS anymore since a physiotherapist fractured a cervical osteophyte. The doctor in A&E showed me the x-ray. Since then I rdered and paid for copies of these x-rays from a year ago, guess what-the x-ray the doc showed me was'nt amongst the 3 x-rays they copied and sent me. Then they make me wait a year to see an orthoperson when my doc wanted me to see a rheumatologist or a neurologist. Maybe the hospital is frightened I will sue them if they own up to fracturing one of my bones. Meanwhile, my health suffers, my life is on hold, and I wait for them to get their act together before I decide to go private. Good luck to you all, it seems that either side of the pond we are all having similar problems.
Avatar universal
Hello Everyone:
I am new here and am encouraged to see the support and knowledge shared by everyone here. To be honest, I am glad to have found this site right now, because I am awaiting some test results at the end of the week. I am hoping the tests will help to identify the cause for the symptoms that I've been having since December, which have been getting progressively worse. The symptoms I've been having are similar to those that some others of you are experiencing. It began with a very large bright spot that I noticed in the far left of my left eye (most noticeable when my eyes are closed or I am in a dark place). It disappears for awhile, then keeps recurring. It seems to be in one area and sometimes moves down. I have tried to see if any action I do can bring it on (ie; moving neck), but the only correlation I come up with is that I notice it, at times, when I bend over, or stand up from sitting. I have also been having brief flashes of light and more floaters than usual.
I have also been having almost constant tinnitus (clicking and ringing in ear on the same side. I also have pain and pressure in this ear and the left side of my head. I have been having tremors in my left hand and weakness, numbness, tingling and cramping in all extremities, but hands are the most affected. I also have sporatic muscle jerks and twitches in extremities.
My previous history is positive for EBV, Fibromyalgia, cardiac arrythymia, Lyme disease (1994) with neurological involvement and also have arthritis and asthma related to Lyme. Also bone spurs and degenerative process in C5-6 and C6-7 + herniation
L4-5 (diagnosed in 1999 via MRI). I have also recently entered menopause (last menses 9/02). I am wondering if anyone else has had a similar visual component to the neurological symptoms I've been having. I've been blaming my symptoms on hormone changes, muscle spasm with pinched nerve and residual Lyme, but my neurologist is suspecting MS. It is very frustrating not to know the cause of what's happening, especially when it comes to the visual problems. They can be startling and frightening. Thank you all for sharing your experiences. It really helps me feel alot less alone to know that there are others out there that share the same concerns.
Avatar universal
I was diagnosed with double cervical ribs twenty years ago.  I had surgery then to correct TOS.  I know that one extra rib occurs in about .5% to 1% of the population, but I am wondering how rare it is to find double cervical ribs?
Avatar universal
This is for the many posters on this board who report variations of peripheral neuropathy and MS-like symptoms, especially the many who are frustrated that conventional medical testing and workups have left you without solutions, or even diagnoses.
In people who report sensory and/or motor disturbances, tingling, numbness, and other unusual sensations in BOTH upper and lower extremities, and/or the face, the cause is most likely not a localized lesion, nerve root entrapment, or other focal problem. These types of complaints smack of a systemic problem, one attacking the body's entire nervous system and possibly the cardiovascular system as well. Environmental exposures, namely chemicals should be suspected, especially when there is a history of such exposures.
For at least some of you folks with these types of symptoms, I would strongly suggest you ask yourself whether you consume aspartame in your food. I would bet that many of you use diet products, especially "sugar-free" lines of products containing the now ubiquitous aspartame artificial sweetener (sold as "Equal" and "Nutrasweet"). The two amino acids making up 90 percent of aspartame are neurotoxins/excitotoxins in large enough doses, which themselves can cause problems with the nervous system. But the most harmful constituent of aspartame may be the 10 percent of the product that binds the two amino acids together -- methanol (wood alcohol). That substance breaks down in the body into first formaldehyde (used in embalming) and then formic acid (the poison in ant stings).
Methanol is a powerful neurotoxin, one that may slowly be pickling your nervous system. The damage may be permanent, but you can at least halt the progression of methanol poisoning by halting your intake of the poison. There are, on the other hand, many instances of people having improvement in their symptoms upon eliminating aspartame from their diets.
I certainly understand anyone being skeptical that aspartame is the cause of their problems, but there is an easy way to prove this suggestion wrong. Simply eliminate ALL aspartame from your diet for 60 days, and see if your symptoms improve. If you need artificial sweeteners in your life, there are at least four or five others that are available.
Many of you have expressed great frustration at the inability of the medical profession to even identify the cause of your problems, let alone treat your illnesses. What do you have to lose by trying my suggestion?
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