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Help needed not fully diagnosed

I need help I have had a mri scan on my neck and they have discovered shadows on my brain where my spin joins and somethink about the cover surrounding the nerves to be less then normal now waiting for a full spin mri with contrast and been put on baclafen and now just been left by doctors till the end of March I’m at my wits end and now ready to end ever think don’t want to be like this any more it’s done nothing but made my life unbearable any more it’s destroying my relationship and now feel like I’m on my own

Please don’t feel you are alone. Its the waiting and not knowing and second guessing everything. It is an horrendous place to be and I can sympathise. Once you get to find out what is going on you will feel better I am sure.

Take Care

Sorry to hear that Drater Is there anyway that you can get in touch with your neurologist secretary to see if you can try and get a cancellation. I think if the neurologist has asked for MRI contrast he may want to look at the problem closer. March is not so long now, it still feels a long time though. You are not alone many people on this site has been through what your going through now and I think that you can vent all you want here nobody would raise an eyebrow. Has your neurologist asked for any more tests or have you had them already. I think that you neurologist wants to be very sure in your diagnose before committing him self to tell you what may be causing your problems. Nobody else but him/her can tell you that you have MS. It’s a good thing that he is making sure that he/she has covered everything. Sometimes it takes a while to get everything done before an appointment, what with the NHS being what it’s like. I have been on this journey for a year now and am waiting until April before my appointment (early) It’s what my sister says it’s doing my head in waiting. So welcome to limboland. Kay

Hi,

in terms of a possible diagnoses, the end of March isn’t really that long to wait. Sadly everyone has to prepare themselves for long waits between various tests that the neuro will need to have the results of, before a dx might be offered…

Your neuro will explain to you everything that the MRI shows, you just have to be patient.

Try hard not to worry, easier said than done, I know.

Rosina

Hello Drater

If it is MS, it’s no longer the horrible disease it once was. There are a lot more drug therapies available, especially for the relapsing remitting variant of MS, so you might find life changes a lot less than you think.

That’s always assuming it is MS, and it’s not until the neurologist has finished his/her tests and declared the results.

I’m sorry to hear your symptoms / testing period (we often call it living in ‘limbo’, waiting for tests and results), are affecting your relationship. Is that because you’re scared and nervous and that’s affecting how you behave? Or is it your partner who’s having trouble with it? Whatever and whoever is having the most trouble, the solution is the same: talk about your fear and your feelings, put your emotions on the line and discuss where you go from here, whether it is MS, or isn’t.

Baclofen is an excellent drug for those people it suits. It’s used to ease spasticity (muscle stiffness) and spasms (where you have uncontrollable muscle ‘jerks’). But, it can make you weaker than you would otherwise be. Because you need a degree of stiffness in your limbs to be able to walk and function, if it’s making you too weak, you could think about asking your GP for a change (some people use Tizanidine or Dantrium, among others).

The end of March sounds like months away, but it’s not so long really. And essentially there’s nothing you can do to change things. It’s just a case of finding a way to live with uncertainty and feeling less strong than previously. That’s not easy, you feel a lack of control over your life, but you do just have to accept that what will be will be.

Try not to feel too depressed and like you can’t live with this situation and the worry about what is going wrong with your body. You aren’t alone with it. We’re here and will listen to your worries and feelings, share in your waiting till the results come in. Just keep talking to us.

Sue

Hi all thank you for your reply I have since been in touch with my doctor to find out what is happening as I have been left in the dark so much since the 15th of Feb since being rushed into hospital and told it could be ms.this is what I found out and the info I now have. 1 the doctors have turned round and said there is nothing they can do. 2 I have the mri results in my possession 3 I have not been referred to a Neuro even tho I was told it had. 4 they said they will not refer it till I have had my second mri with contrast die So any info please regarding the following results would be grate Radiology report There is abnormal high T2/STIR foci noted within the visualized lower medulla. Further areas of T2/STIR hyperintenisits noted in the cervical spinal cord left side of the cord at C2/C3 level measuring approximately 1.3cm in craniocaudal dimension, patchy small hyperintensity on right at C5/C6 and at C6/T1 measuring 2.5cm in craniocaudal dimension. There is also suspicious of high signal in the upper thoracic cord. Normal cervicomedullary junction. The spinal canal is capacious. The alignment and vertebral body heights are maintained. No pathological marrow signal. The multilevel small osteophytic disc bar at C3/C4, C4/C5 and C5/C6. But no significant neural compression or foraminal stenosis seen. No abnormal paravertebral soft tissue. Conclusion Multifocal patchy high signal foci within the lower medulla and a cervical cord are most likely suggestive of demyelination plaques. No significant disc protrusion or neural compression seen. Referral to neurologist is suggested. Urgent MRI head and whole spine with contrast is suggested. Report contains an urgent or unexpected significant finding that has been communicated to the referring clinician in compliance with radiology protocol. Can i take this opportunity to say I have aspergers. And I love details but can’t seem to get any info I can understand and it drives me mad.

Hello Drater

It’s quite difficult for us non doctors/radiographers to pull apart a report like you’ve received. But I’ll give a bit of it a go. Just remember, I’m not a scientist or any kind of expert.

Demyelination being mentioned makes the suspicion of MS a bit more likely. Myelin is the substance that coats our nerves and brain. So de-myelination means that something has broken through the myelin and is causing the nerves to be exposed (think about an electrical wire where some of the insulating plastic has been scraped off and the wire is exposed). Demyelination is what causes lesions (also called plaques) to form in the central nervous system. These lesions are like scars. And the inflammatory activity that is affecting the myelin is often an autoimmune problem, ie MS.

It sounds as though you will get a new MRI of the entire brain and spine soon as that’s marked ‘urgent’. The bit about contrast is where midway through the MRI scan, they pull you out of the machine, stick some dye (called Gadolinium dye) into your veins through a cannula that they put in before the test. Then they repeat some of the scans. The point of the contrast dye is that it shows up more detail and it will also show any areas of current inflammation.

It also seems to be in the right order. First have the detailed MRI scans, then see the neurologist. That way, the neurologist will be able to see the clinical evidence as well as take a detailed history from you and carry out a physical examination.

At that point, the neurologist should have a good idea if it’s MS, or something else. The ‘something else’ could be a Clinically Isolated Syndrome (an attack like MS that’s a one off event), or a different neurological issue.

I hope all of this makes sense to you and helps to clear up the irritation that the report’s giving you.

Sue

Hi all sorry for all the delays with update for you all I have now been dx as of April a dose of steroids and had a discussion with a neuro and I’m (removed by moderator)I have a mass in my brain in the middle and I have a mass of lesions with several being active and several being very aggressive and my options are slim to none is basically what she said I dont have a choice of meds to take I just have one option and if this fails or I ha e any new lesions or they are still active and aggressive then its stemcell oh (removed by moderator) that is all I’m thinking if had my first dose of the meds tysabri no reactions so just a waiting game now and just trying to get back all that the ms as robed from me not just disability but life wise its took a lot if not all

I am so sorry to hear that you have been diagnosed, as I have said before vent away, it sucks, I hope you do have some medication that may help you to cope. I can’t tell you what comes next Ssssue or anybody on this site may be able to give you advice on what happens next. Good luck Kay

Hello Drater

I’m sorry to hear your news. It did seem likely from your initial MRI, but we can’t prejudge diagnoses.

The best news is that you are on a very, very good disease modifying drug. Tysabri has an average of 70% fewer relapses and reduction of severity of any relapses. Have a look at https://www.mstrust.org.uk/a-z/tysabri-natalizumab which will tell you more about Tysabri.

So while it’s very bad news with regard to the kind of MS you have, ie highly active, it’s good news that you’re on Tysabri.

Your neurologist sounds like she certainly knows what she’s doing. Having a plan for if Tysabri fails is excellent. And the autologous haematopoietic stem cell transplantation (AHSCT) now being used looks pretty good. See https://www.mstrust.org.uk/a-z/stem-cell-therapy for more information.

I hope that the Tysabri does its job, and starts not only protecting you from further relapses, but actually has a positive effect. It does for some people (don’t get disappointed if it doesn’t, it’s just a possibility, nothing more).

If you have the ability to get a bit fitter, now is the time to do it. If you don’t have a physiotherapist, ask for a referral to one from your MS nurse (I assume you have one of those?). Getting your core (your abdomen, back etc) as fit as you can will pay dividends in the future. I never understood this, and the physiotherapists I saw in my early days didn’t explain what ‘core’ was, nor why I should try to strengthen it. A good physio will work out a plan for you and ways in which you can get back a little bit of the strength and abilities you are deficient in right now.

You also mentioned earlier that your relationship was suffering as a result of the investigations which have resulted in your diagnosis. You could try and resurrect that if it’s fallen to pieces. I imagine that personal relationships are harder when you have Asbergers, all I can suggest is that you try to talk about your feelings with the other person. Try to explain how MS has made you feel and what is going through your head now that you are diagnosed and have started treatment.

I wish you the best of luck.

Sue