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My boyfriend is almost diagnosed

Hello everyone,

It is the first time I am writing here or anywhere else and I would appreciate to receive any support from you. I am contacting you from France where I am living with my boyfriend (24 years old). Around 2 months ago he started to have a paresthesie so feeling of pin and needle going through his stomach and legs.He felt a little discomfort because of that. He met the doctor, took some magnesium and after 1 month the symptoms disappeared. Anyway, he has decided to meet neurologist who asked him to get a MRI of spinal cord and brain. We received the results 2 days ago with information that he has 3 hyperintensive signals in brain (one in the white matter) and one in the spinal cord in the section C6-C7.

Yesterday we met neurologist who told him there are two possibilities: boreliose (lyme disease), because his blood test showed the possibility of it, or multiplex sclerosis, but the doctor didn’t want to give diagnosis before lumbar puncture.

Today, so just the next day, my boyfriend woke up with paresthesie in his hands, legs, he vomited and told mehe feels like he is about to loose his balance. He is not sure it is because of the disease or the fact he is feeling very anxious now. We went to the hospital to the emergency and now I am just waiting…

I am waiting for the result of the puncture and I am waiting for the diagnosis…Is it possible to have the results of lyme from the puncture? I thought this test is only for sclerose…

I am trying to be strong next to him, but when I am alone I feel this overwhelming fear for our future…

Any supportive words would be much appreciated…

Thank you and sorry if sometimes my English is not perfect!

Hello fratalia

Don’t worry about your written English, it’s great.

The lumbar puncture can often detect Lyme Disease as well as the Oligoclonal bands which 80-95% of people with MS have. So the neurologist is using the LP to rule Lyme (probably) in or out and the add to any diagnosis of MS.

To be honest, neither diagnosis is great, but Lyme Disease is probably preferable since it can be treated with antibiotics. However, an MS diagnosis nowadays is not quite as dire as it perhaps once was there are now a lot of disease modifying drugs which aim to reduce relapses and the severity of relapses.

I hope he (and you) get some answers soon, so you can start dealing with the illness.

Best of luck.

Sue

Thank you for the answer.

We are still waiting for the results… My boyfriend stayed in the hospital for 3 days while they were doing all kind of tests such as putting some papers in his eyes and checking the amount of tears, taking a piece of his oral cavity, hundreds of blood tests etc.

They have half of results, but we are still waiting for full blood and lumbar puncture ones. Until now we only know he has 3 little changes (hyper signals) that are very small (with one of them radiologist was not sure if it really exists) - 2 in brain and 1 in spinal cord, he has only one symptom which is paresthesia (from time to time), the fact doctors are almost sure it is not Lyme disease and that first results of lumbar puncture shows inflammation.

We called today both- his neurologist and hospital and we still have to wait for full diagnosis… Anyway, doctor doesn’t want to confirm anything before having full results of tests, but he said that even if it is MS, it is unlikely that it is an aggressive type and that he would directly start a treatment with the ‘softest’ drugs. For now, life goes on, we enjoy, live, work but being more careful about health.

I am happy that he is in a good hands, but then I am frustrated to wait so long…

Anyone had a similar story?

hi fratalia

the waiting comes along with the nhs.

it is a wonderful institution but the cogs move slowly.

sorry you have to wait.

carole x

Hello,

After long time of waiting we received the results from the hospital, blood tests and LP. In summary they called it Clinically Isolated Syndrom with dissemination in space, but no dissemination in time, BUT the LP shows oligoclonal bands in a mirror pattern to the ones in serum, which may rule out MS…

Therefore, we still know nothing. New MRI in November.

Anyone has/knows the case of having same number of oligoclonal bands in CSF and serum?

It is probable that it is not MS, but some other disease…

Hi, I am also waiting on the diagnosis but for my dad. I am so worried due to doctors suspecting he has progressive MS. He also needs a lumbar puncture. I just feel so helpless and bad for him. He says he is okay and is in denial, however, we are all so worried especially for the future. I wish you luck with your partner. It is awful having to wait so long for diagnosis. It’s draining for everyone, wish there was more we could do. This is the first time I’ve ever posted anything on here, and I don’t really know what else to say. Best wishes to you x