New Member - In Limbo!

[Minky Madam]

Hi everyone,

Hope it's ok for me to post here?? Quick Intro - I'm a 50 ish  Mum of 2 plus husband and neurotic Border Collie! Currently under investigation for 'Neuro Inflammation'

Acute symptoms earlier this year saw me in A&E,eventually ended up on Neuro Ward for 5 days, was given 3 days IV Steroids & discharged with MRI results of 1 x non enhanced and 1 x enhanced spinal cord lesions, 'non specific' white matter changes in brain and Lumbar Puncture results pending.

 

Got letter today from Neuro, part of which reads: 

 

"The lumbar puncture demonstrated 6 white cells, no red cells, a CSF protein in the normal range at 0.72 and a normal CSF glucose at 3 with a blood glucose of 4.5. There were oligoclonal bands seen in the CSF only which is supportive of an inflammatory explanation for your neurological problems, and suggests that the area of abnormality seen in the spinal cord was due to demyelination.
I will arrange for you to be seen in my next available follow-up appointment so we can see how you are recovering from your symptoms since you have had the intravenous steroids, and then we can decide whether or not further treatment will be required."

 

Thoughts anyone?? Have appt in October, not sure how I'm feeling , don't like the phrase "suggests the area of abnormality due to demyelination"  .....consultant hedging his bets I guess??

I would welcome opinions based on others' diagnosis/non diagnosis experiences!!

 

Thankyou :)

 

 

[Nick]

Hi Minky Madam,

 

Of course you can post here! Welcome to the forum.   It's a really difficult time for you right now.  I know what the feeling of 'not knowing' is like, often referred to as 'Limboland'.  Firm diagnosis of neurological conditions often take time to be diagnosed and they are only made by the Neurologist.  I'm not good at technical explanations, but a few people on here may well be able to give you a better explanation.  This link is a good explanation of the process.

Nerve cells (neurons) | MS Trust

WWW.MSTRUST.ORG.UK

---

Nerve cells or neurons carry messages between the central nervous system and the organs and limbs of the body. The brain develops rapidly in the unborn child and in the first years of lif

Read more  

I suppose I was fairly typical in the way I got my diagnosis.  I had problems with sight way back in 1998, a condition know as Optic Neuritis,  I was not told of the connection with MS, had a short stint on steroids, regaining my sight after about four weeks.  Another ten years went past before I started experiencing a range of mobility problems, pain and fatigue issues. These proved to become rapidly worse, at which point I was referred to a neurologist. After several MRI's and a lumber puncture , the diagnosis was MS.   The first difficult time was waiting for appointments and simply not knowing what was happening.  Working in a high stress environment, piled on the pressure, which simply making things worse. The second difficult time was after the actual diagnosis.  A diagnosis of anything is simply a label, it gives a name but tells you nothing.  The problem with the label 'MS' is that people with conditions like ours are all affected differently.  The damage done to neurological pathways will occur in different parts of the brain and spinal cord, may only occur once, or many times.  All very scary I know BUT how you, yourself may be affected is difficult to know. Many people with MS have relatively mild symptoms, others much more severe outcomes.    

I know that in my case a big reduction in Stress, and learning about what I could do and what I could not, changed my own perception of my condition.

This stressful time for you is the time you need to put yourself first, a very difficult thing for a Mum to do!! Yet this should be your No. 1 Priority. Back off, rest and recuperate.  Stop thinking too much about the forthcoming worries of the appointment, let people know that you are still not right. 

 

Lastly, keep a diary of your symptoms and make notes of what you want to know from the Neurologist. Prior to the appointment  condense these into a few simple lines. This will be useful to both you and the neurologist.  

 

Do ask questions on here, it's a bit quiet right now but it's a brilliant place to learn about how to cope 

 

Nick 

 

 

[Minky Madam]

Thanks Nick for your kind reply. I feel from the wording in the letter, my neuro is hinting at MS. I'm guessing they probably woudn't have given me IV steroids without a reasonable belief that it was certainly inflammatory!

Yes, I shall make a 'list' to take to my appt as when I went in via A&E, they really only noted my symtoms at the time of admssion, and a few months prior.

Brief timeline (although getting too old to remember specific dates especially as I pretty much dismissed many of these things at the time!

About 20-25 years ago - 2 episodes of black vision lasting about 20 mins then went off; numerous vertigo episodes over 25 years always put down by GP as viral/labrynthitis; random tiny tingly patches on legs,back and face for a couple of days here and there; burning ankles about 8 years ago for a week or two.

Intense jaw pain like being electrocuted about 2 years ago which lasted about a month on and off

A year ago - Numb/tingly/reduced skin sensation in right chest, underarm, inner arm and wrist lasting about 4-5 months plus weird sensation in one foot of walking on bunched up socks

6 months ago - 'hot' nerve pain in abdomen, hips, thighs and burning in back of knees (although this may have been due to surgery I had)

8 weeks ago, gradual weakening of right leg and difficulty urinating, culminating in leg spasticity, giving way and total bladder retention which is what sent me to hospital!

Since hospital and steroids - regained right leg, bladder working albeit reluctant and frequent, left leg and foot burning hot flayed skin feeling started and now tingly weak right hand, arm and lips with buzzing in my head!!!

 

Consultant will love me when I hit him with that lot.

 

Oh and my eyeballs hurt - apparently I had a wobbly eye in hospital????

And inexplicable exhaustion at random times plus brain fog and word finding difficulty - but that could be my "certain age" stuff :D

 

So if it's not MS I must just be generally falling apart/going mad!!

 

I only had evidence of 2 lesions on MRI though, but have read that lesions can shrink and disappear, anyone know if this is right??

 

Sorry to offload all this folks, but not the sort of thing you can casually drop out over coffee with a friend really!

 

[Nick]

A lot of these things are MS type symptoms ,  Vertigo, spasticity and urine retention are all things I am all too familiar with!  With regard to lesions, as I understand it they do repair to a degree, however the body finds different routes to overcome the slow transmission of signals.  One of the reasons that it is still important to exercise with MS.   My big thing is stress avoidance, something that even after 10 years, I am not very good at!!  Learning to live with a condition like MS is all about acceptance first, then learning how to live with your version of it.  There are often warning signs, that things are not going well, then it's time to back off. Other times the body feels less affected and then you can do more. This is what other people find confusing, they don't understand that you have to live with your MS 24/7.   Having a partner who goes through this learning process with you can be very important.  I'm married and often the wife sees the warning signs before me! 

Don't get ahead of yourself, be patient and wait for your next appointment.  A specialist can't possibly know exactly how things will progress, however in my experience their vast knowledge is very useful in helping you understand things, make good use of their time!

Edited 11 Sep 2018, 8:02 pm by Nick

[Marina]

Hi Minky Madam (love your name!) and  . It’s most definitely OK to post here, and you’re not “offloading” all this, that’s what this forum is here for

Your neuro may well be being cautious about giving any definite diagnosis, as neuros often prefer to wait and do a 2nd lot of tests a few months later in order to compare the results and look for differences. You might find that the McDonald Criteria helps explain on what basis diagnosis is made:

 

A bit similar to yourself, I’d had various symptoms on and off for years. Eventually, I had my first MRI (brain only), at age 49, which showed 3 enhanced lesions, and the report mentioned demyelination. However, it wasn’t enough for a DX, especially as you’re allowed one lesion per decade of your age, as it can apparently be normal to have “natural” lesions. The type of lesion is important too; an MS specialist neuro would be more au fait with this. It wasn’t until I went to another neuro, over a year later, that he ordered a 2nd MRI, and I got my diagnosis, as there’d been changes in my lesions, albeit slight ones.

Diagnosis is made not only on results from tests, but on symptoms too.

As Nick has said, a lot of your symptoms are those some of us get.

Your description of intense electrifying jaw pain sounds like it might be Trigeminal Neuralgia, another typical thing some of us MSers get:

 

Painful eyeballs may (or may not) be due to Optic Neuritis, again common in MSers:

 

Definitely, make a list of all your symptoms, with dates if possible, and of any other health or medical ailments. It can be surprising what might or might not tie in with MS. Keep the list fairly short and to the point, print it out and give it to the neuro and ask him if he’d please read it. He’d then have your written record of it as well as whatever notes he makes. It also helps if he reads it, in case you forget to mention something on it after being distracted by any conversation with him. Not all neuros will read it, some just push it away. A good neuro will read it. It can also be quicker for him to read it than for you to start telling him your symptoms and his going off on a tangent.

October must seem like a long time away, right now. Fear of the unknown is always a stressful thing. In the meantime, please feel free to ask about anything

 

[Shirl]

Hello @Minky Madam & a very warm

Whenever I read the experiences of those now in Limboland and those of us who escaped by hook and by crook, I'm painfully reminded I was where you are now when I first joined this forum.

 

I've recently returned and am glad to join Nick and Marina in all they've said to you. We've all known the frustrations, anxieties and confusion that Neuros unwittingly cause us. When I finally had my dx I felt like throwing a party. I don't know who I would have invited as friends and family had been certain all along so it wasn't new news to them.

 

And there is always the sceptical viewpoint - "if it isn't MS, what is it, because it isn't my imagination causing all this malaise".

 

Let those that have been where you are now support you! Nick and Marina have given excellent advice. I would only add that I never attend a medical apointment alone. Always take a good friend or family member if ever your husband is unable to go with you. I write a list of questions and my husband sits with it on his lap. He is able to talk for me when it all gets too much. He always notes down info for me. 

 

And always keep letters and reports - if you need to claim a benefit, supporting evidence is a key requirement. As well as being your own data bank about YOU.