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Hughes Syndrome APS Forum

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Multiple Sclerosis

10 years ago•14 Replies

Would a positive Lumber puncture and positive evoked response tests plus white areas on the brain give a definite MS diagnosis? Even though I have got APS Anybody had this?

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42Lilac

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14 Replies

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Manofmendip10 years ago

Hi.

I agree with my colleague, we are not doctors and you should speak with whoever is managing your condition.

Best wishes

Dave

42Lilac in reply to Manofmendip10 years ago

Thankyou will ask at next appointment

42Lilac10 years ago

Thankyou for your kind words I will ask the Consultant

Lindasboo10 years ago

Hello Manxcat ten years ago I had all the tests you mentioned and it did confirm I have secondary progressive MS. I was informed though that people can have white spots on the brain it doesn't always suggest they have MS. I hope this helps.

Warm regards

hypnoali9 years ago

What is APS?

Yes it would but it is nothing to panic about. Hve you been diagnosed and what sort of MS do they think you have? When were you diagnosed?

Lure2 in reply to hypnoali9 years ago

Hi Hypnoali,

As you are on this site, I guess that you believe perhaps that you have got APS and as you are interested in MS also, I think it would be very wise if you could put a question on this Forum.

We are no doctors here but it is a very interesting question how to know if you have got APS or MS or perhaps both illnesses. MS and APS are sometimes mixed up because both have many symptoms in common.

Best wishes from Kerstin in Stockholm

hypnoali9 years ago

I have MS and Fibromyalgia. I know that I have MS. I have been under the care of a consultant Neurologist for 10 years. I lost my eyesight 10 years ago and they thought i had a brain tumour. I am not looking for advice but am well qualified as a sufferer and therapist to help people with their mindset. Did you know that 60% of people who are diagnosed with conditions which no-one knows what has triggered them, or has a cure for them, die within 5 years because their bodies go into clinical shock and their systems shut down. They are guided by scientists and become guinea pigs for drug trials and their self confidence and their health go down hill.

I am a clinical hypnotherapist, NLP practitioner and Reiki master and I treat people for free to help them get over the trauma of their diagnosis and see that just because you are diagnosed, it does not mean that your life has ended.

I have not heard of APS and do not know what it is or what causes it.

The doctors here in England are very careful and as helpful as they can be but in the end you have to sort out your head and start living your life again. It took me two or three years to finally take the bull by the horns so to speak and realise that your condition does not define you as a person.

I am finding it hard to navigate these pages to find MS sufferers and get into their forums. Everything seems to be in an abreviated form and it is not easy to put in symptoms because your little boxes don't accept things like "loss of eye sight" which is really important as a symptom because it is very very frightening.

Alison Marshall - hypnoali

Lure2 in reply to hypnoali9 years ago

Thank you for your answer.

I understand that you do help a lot of people and it is very interesting what you say about trauma. I believe also in those things you talk of.

I am glad that you found this forum and many people have been supposed to have MS (even I from the beginning by an Neurologist). The Neurologists we have found on this site, do not "get" what APS is.

A Rheumatologist or a Hematologist are the two types of Expert-doctors who mainly treat this illness. It is treatable. The thick blood that we all have has to be thinned.

Before i started warfarin and was ok I had a lot of trouble with my eyes and balance and ears. I saw double, had Auras without headache, had stubbing pain in different parts of the head for some seconds, lost my vision for some minutes on half of my right Eye (always the right Eye), had terrible Vertigo (everyting was spinning to the left for some minutes and i had to crawl or hold on a tree till it Went away).

I wish you would see a Specialist of APS and take some bloodsamples.

I say this to you as so many here have been misdiagnosed of having MS and also some GPs, who know nothing of APS, have said that some also have had Fibromyalgi. APS is an autoimmun illness and the antibodies can attack healty organs in different parts of the body.

Please put a question here. We are a friendly Forum and people are just wonderful and try to help as much as they can.

Knowledge is Power!! Do you not agree? I think you do.

You must be a very interesting person. Please stay here with us.

Best wishes from Kerstin in Stockholm

AnnNY9 years ago

I know they are looking something specific in your spinal fluid to diagnose MS. I have had two lumbar punctures and I don't have what they are looking for. If you are positive for these Oligoclonal bands (MS) and also positive for APS, you are definitely going to need a top specialist to figure it out. It may be that anticoagulants would help some of your symptoms, but not others.

I have a lupus like illness that affects my peripheral nerves (pain). I started taking aspirin and found the pain in my arms got much better from aspirin, but plaquenil helps the pain in my legs. I think I'm going to my grave perplexed by that, but at least the pain improved.

AngieRae9 years ago

I am going through the same issues in the U.S.

Positive o bands in csf, extreme headache, 6 brain lesions, livedo rash, and positive lupus anticoagulant. They insist it is MS and won't even consider listening to my questions about Hughes.

itasara8 years ago

I was dx'd with MS With MRI only LP may not be necessary unless there is doubt. I have one close relative with w MS dx'd only by MRI & 2 symptoms.

KKlynch5096 in reply to itasara8 years ago

I said to get a MRI also.

KKlynch50968 years ago

Get a MRI. That would tell you for sure. Also MRI with contrast

mammamoose7 years ago

I had a diagnosis of RRMS from MRI scan showing brain and spinal lesions, evoked potential test showed up eye differences in response and lumbar puncture showed up oligoclonal banding. I was told that I had to get a "result" in each test to get the diagnosis even though the MRI left little doubt of the diagnosis. It is very difficult and long process to get diagnosed and so many other ailments mimic MS so here in the UK, they go for all three to be sure.

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