Not had ms confirmed yet : I have a lot of... - My MSAA Community

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Not had ms confirmed yet

Foxy619 profile image
14 Replies

I have a lot of symptoms of ms for probably 4 years but recently symptoms have tripled and very quickly having a Ct scan tomorrow and blood tests next Wednesday but I would have expected MRI scanSymptoms I have

Walking in custard with plaster on my legs so legs are stiff struggle to get out of chair bed and climb stairs

Legs give way from knee legs and feet suddenly move when I'm relaxing a bit like a sneeze you know its going to happen but have no control

Dizziness fatigue(I worked yesterday so have to rest all day today)

Have problems with bowels and waterworks - no control after previously never having a problem - u feel very unwell

Carolyn

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Foxy619 profile image
Foxy619
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14 Replies
Xvettech profile image
Xvettech

hi I’m sorry you are dealing with all this! I think you need mri. I not a dr so I don’t know and this is only my opinion. I have no human medical knowledge.

Garp41 profile image
Garp41 in reply toXvettech

Hi Foxy,

I also think you need an MRI.

A number of years ago I had what were described as classic MS. Symptoms, but the spinal tap showed nothing. After 16 years of 2 attacks/year and trying to figure out what I had, I moved from cold/cloudy Chicago to So. Florida.....the attacks immediately stopped. Make sure you are getting enough D3......Best of Luck

Fancy59 profile image
Fancy59CommunityAmbassador

Foxy619, I am so very glad you're Getting to a doctor right away. Hopefully. You're going to a MS certified neurolojust because they will be able to better diagnose MS. MS tends to mimic many other diseases. Sometimes it can be hard to diagnose it. . Your best bet is your MRI and doing a spinal tap to look for certain fluids in the spinal canal that are indicators of MS. Please let us know the results as soon as you get them.I want to welcome you to the MSAA chat room which will be great support jf and when you are diagnosed with MS. We have a lot to offer and have great fellowship and some of the most kind and compassionate people I have ever met. Take care until we talk again and remember together. We are stronger! Fancy59.

Foxy619 profile image
Foxy619 in reply toFancy59

Hi thank youI think that's the problem I was told I had PMR 4 years ago but as the steroids dont work anymore and symptoms have increased I think doctors know other auto immune diseases can mimic ms

Thank you for your kind words

Carolyn

Fancy59 profile image
Fancy59CommunityAmbassador in reply toFoxy619

Carolyn, Insist that whatever doctor you go to, hopefully an MS neurologist, you do a spinal tap to look for the fluids in the spinal canal that are indicators of MS. That will rule out the other autoimmune disease and let you know for sure you have MS if the fluids are present. If the doctors don't know what you're talking about you are at the wrong doctor and find another that knows about the MS spinal tap. Fancy59.

Robsmom profile image
Robsmom

Hi, yes there are a lot of diseases that look like MS. A spinal tap would also tell if it was definitely MS. NMO is one that often looks very similar to MS.

ahrogers profile image
ahrogers

A neurological exam can help identify if symptoms are coming from the central nervous system as well as MRI and spinal tap. Are you seeing a neurologist or a rheumatologist?

Frances_B profile image
Frances_B

For those who are saying that a lumbar puncture (spinal tap) will definitely confirm MS - this is not strictly true - in two ways.

Firstly, there are other inflammatory diseases where oligoclonal bands can be found in the CSF: "Oligoclonal bands are suggestive, but not pathognomic of Multiple Sclerosis, being found in infective and inflammatory diseases of the CNS e.g viral encephalitis, bacterial meningitis, neurosyphilis, sarcoid and lupus."

southtees.nhs.uk/services/p...

Also - here's an even longer list of disease which may produce oligoclonal bands in CSF:

"Apart from MS, there is a long list of diagnoses with CSF OCBs reported: systemic lupus erythematosus, neurosyphilis, neurological paraneoplastic disorders, Behcet's disease neuroborreliosis, aseptic meningitis, neurosarcoidosis, HIV infection, cerebral tumors including lymphomas, Sjögren's syndrome, herpes encephalitis, Morvan syndrome, Anti-NMDA and other autoimmune encephalitis, neurotuberculosis, anticardiolipin syndrome, HTLV myelopathy, prion disease, schistosomiasis, stiff-person syndrome, cerebral cysticercosis, GBS, CNS vasculitis."

frontiersin.org/articles/10...

Second - around 10 to 15% of people who are confirmed as having MS and have had an LP will actually have an LP which is negative for oligoclonal bands - which is why an LP is just one test which may help if other tests such as MRI, evoked potentials, nerve conduction studies etc have been inconclusive.

Also, it's important to note that patients do not tell doctors what tests to do - they can "discuss" test options with the doctor but it is the doctors who make the actual decisions and patients cannot "insist" that certain tests be done - that is an arrogance that is a sure fire way to get the doctor offside and not listening to you.

Dan_NY profile image
Dan_NY in reply toFrances_B

Thanks for posting this. I have multiple potential items in that list so a LP would not be useful to me. Very very good info. On another note, I disagree totally with your assessment. I am in charge of my health and my body, not the doctor. Test decisions are mine, not the doctors. I will take his advice (and others) into consideration. You may be surprised how many pills I've been told i have to take, a number of tests the doctor has told me I needed and when presented with medical information stating the contrary, docs are very unhappy. Many times, I am paying the doctor specifically for a certain test. I am not paying him to tell me no. This is a sore subject for me as I think its actually the doctors whom are arrogant. Sadly, it is the doctors whom can delay or refuse your needed tests and treatments, though you are a paying customer. It is true that if you come across equally as knowledgeable as some doctors, they wont listen. Its sad that many doctors have this EGO. My advice is not blindly follow doctors orders if possible. There are situations where the doctors will not make decisions with your best interest in mind. Medical journals are posted on line and accessible to everyone. Apologies to the OP. I really hope your MRI went well and you are getting some needed answers.

Frances_B profile image
Frances_B in reply toDan_NY

You make some quite valid points. I'd like to point out though that my criticism about lumbar puncture is that there are far too many posts and comments on social media and internet chat sites about how an LP is the "definitive" test for MS, when it actually isn't and is just one test that is used, especially if there are possible questions about separation in time and space for lesions on a brain MRI. Don't get me wrong - an LP does add to the picture and help with diagnosis of MS (or some other disease) but if I had a couple of bucks for every post I've seen claiming that it is "the definitive test"" for MS I would be living in a much much nicer house than my current abode! If it were "the definitive test" for MS then there would not be 10 to 15% of people who do in fact have MS but still return a negative LP but , it would be 100% returning a positive test.

My note about "insisting" that specific tests are done (some people post using the word "demand" instead :( ) is that there are a lot of people who convince themselves from a bit of searching around on Google and Facebook etc that they have a particular disease, they then post in chatrooms and forums and on FB asking if people think they have MS. I understand their anxiety etc, especially if they are having a slow or difficult road to diagnosis of whatever it it is which ails them, but answers online simply cannot replace the many years of training a specialist has undergone. Yes, there are some really crap specialists out there who should probably not be practising medicine at all, but overall the level of knowledge will outweigh that of Joe or Josephine Public who posts on the internet.

I agree with the need for patients to be "in charge" of their health care, and this gives them the right to not comply with what a doctor suggests they should do in relation to treatments/ medications/ tests etc. However, it does not give a patient a right to demand a specific test or treatment from a doctor if the doctor does not believe it is necessary or warranted. Hence my use of the word "discuss" in relation to test options - an informed patient is able to discuss their health and treatment with their doctor in a collaborative manner. Of course a patient is always free to shop around until they find a doctor who will just order whatever tests a patient wants done, but if I came across one of those doctors I'd be highly suspicious about which online fake medical degree they "held". Sadly, in the USA a lot of decisions about patient care seem to be governed by the $$$ that will go into the doctor's bank account rather than what is best for the patient and too often it seems that the great god of fat bank balances has overruled Hippocrates.

Tazmanian profile image
Tazmanian

See an MS neurologist and be patient

RoyceNewton profile image
RoyceNewton

I agree MRI (Magnetic Resonance Image) of Brain and spine with Contrast, do not forget the Valium for the tube. I am not a doctor just a 20+ year ms person.

Good luck either way.

Royce

kdali profile image
kdali

CT and blood tests does not sound like you're being worked up for MS right now. I'm sorry you are having such a hard time, and I hope you can rest while you're waiting for answers.

Irishgirl76 profile image
Irishgirl76

Hi, please know that we do have resources that neurologist have to follow. Today that list is available. I would research MS society, Neurology magazines that are current. Get update of current news and know we all have complications in multiple ways like bowel/bladder. Yes, I realize one condition mimics another and even today I lack trust but I take one symptom at a time and listen daily and record. Much work but we need to make our healthcare system accountable. We get a second opinion and address with doctors who take time to explain. Hope you make a list of needs and discuss with SPECIALISTS. You are in my prayers every day!

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