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waiting for diagnosis

Hi, my name is Anne, and as from today my husbands doctor has finally said he thinks my hubby has MS, 12 years ago we starter this journey, MRI’s Blood CT Electrodes, but we never got told anything, now back in Jan 2011 a rheumatologist confirmed with our doc that my husband had brisk upper and lower limb reflexes with Hoffmanns sign at the hands, movement at the neck was restricted with discomfort suggesting Lhermittes phenomenon, none of which was explained to us, I researched it on the internet, this consultant recommended assessment with a spinal surgery collegue, My hubby was assessed and sent for another MI and an appointment with a Locum Consultant Neuroligist in December 2011.

The conclusion of the MRI showed 3 patches/lesions on the brain, the consultant said 3 thing could cause it, I cant remember the 2, but he never offered the third, so I asked if it was MS, he declined to answer, and then wrote to the docs say my hubby had small vessal disease,(correct me if i am wrong but i believe this is jargon they use) since that time my hubby has been getting worse with each week, stumbling,loss of vision,difficulty swallowing,toilet problems,pins/needles, numbness, headach to name but a few, they ruled out motor neurone and have continued to treat for fibro myalgia. his cholestral was high so they started him symvastatin, its lowered the cholestral but he appears to be worse. on friday after another pointless journey to the doc, my hubby came home and said he may as well sit in a chair and die, perhaps they might listen then, at this i lost my temper, i rang the doctors and am afraid to say that 10 years worth of tears temper etc erupted, well the doc listened and invited us both in today, and the end result is that if the doctor could say he MS he would but he needed a deffinate from the neurologist so he was going to write and ask him, I asked about the 3 sets of findings, and he agreed they should have been followed up. I feel so let down not for me but for my hubsand I so want to get him a quality of life back but we seem to be banging our heads against the preverbial brick wall. does anyone know if the signs and symptons I have stated mean it could be MS at leat he might get some help.

thanks for taking the time to read this means a lot xxxxxxxxx

anne

xxxxx

Hello Anne Sounds like you have been given the run around a bit! I think you need to get the GP to re-refer your husband to the neurologist as s/he is the only one that can give answers. Certainly the symptoms you discrbe are found in MS but they can accrue in other conditions too. Small vessel disease is more of a vascular problem I believe, and may account for some of his problems, but it looks different on a MRI scan than lesions do. So this would need clarifying by a Specilest. Simvastatin can cause pins and needles as a side affect (I have heard but not on it myself) but if his cholesterol is high he would need advice before stopping it, there are alternatives. I would really push for an neuro or vascular appointment. Good luck. Ppx

Now the gp realises just how bad things have got he will be sending a proper letter to the neuro asking for answers and highlighting what has been going on for so long.

Hopefully now it wont be too long before your hubby is seen.

Has the gp started him off on meds to deal with the symptoms while you are waiting…he doesnt have to wait for neuro input in symptomatic relief.

Pip

Hi Anne, and welcome to the site

Really sorry to hear what you’ve both been going through - scary and difficult, never mind frustrating!

I’m quite astonished that the neuro you saw in December didn’t arrange a follow-up appointment with someone for your husband. Hopefully you won’t have to wait too long now the GP is on board (and well done you for that very effective rant!).

In the meantime, please pressure the GP into giving your husband meds to relieve his symptoms. He should also see a continence nurse. I think you can self-refer for this, but it might be easier to get the GP to organise things. Also, has he seen an ophthalmologist about his vision? Your GP can also refer him for this. A referral to neurophysio / rehab physio might be helpful too for his walking and speech therapists can help with swallowing.

You don’t need to have a diagnosis to get help, but unfortunately it tends to be the people who ask who get - so make sure and ask (shout if necessary!).

I hope the neuro appointment comes through really quickly.

Good luck!

Karen x

what can i say but thanks to you all for taking the time to answer me, the doctor we saw on monday admitted that none of the letters from any of the specialist’s had been followed up, the only thing mentioned was that my husband didn’t have motor neurone, i have been through our letters again and a spinal consultant noted spinal indentations at c4-5 c6-T7 he also remarked on the hoffmanns and lhearmites it was this consultand that refered us to a neurologist, I had considered contacting the consultants as there are blood test results missing, and some scans, I dont want to appear pushy but gary my husband has suffered this now for at least 12 years, as for him being started on treatment, dont you have to have a deffinate yes it is MS before they give you treatment, you have all been brill as I have sat here talking to you the flood gates opened, sorry dont usually cry, anyways can you aks for treatment, do you think it best to wait, oh gary has to have blood tests tomorrow one for vit D deficancy, and cealiac disease, dont know why

any many thanks will keep posting, appreciate your time and input

xxxxx Anne xxxxxx

You can’t get disease modifying drugs in the UK until you have a diagnosis and meet the eligibility criteria, but you can get meds to relieve some symptoms. You can also be referred for any type of therapy because therapists treat symptoms and, while it’s helpful, a diagnosis is not necessary.

12 years is an awfully long time to deal with things without a lot of help. Time to get as much help as there is out there I reckon?

Kx

hey…so sorry to hear of your long wait and very few answers…but glad your gp is on board now and sounds like they will do their best on this to get your hubby seen…if you are not t happy with the neuro ask fora second opinion…as you say the vascular aspect does not explain all his symptoms…and as Karen suggest you are entitled to he,p re meds and helping with physio etc…infact I think the more involvement the better at this stage… also eye consultant is pretty important too…a proper revivew is much needed and any missing test results track them down or get bloods re done…I think it’s appalling that the consultant didn’t explain fully the three poss causes and it’s a shabby way to treat a patient…sorry but some of these drs need a kick up the *** I doubt they would be happy to be treated like that…also consider contacting PALs they may be able to do some of the legwork for you re missing tests and scans…and if they cannot be tracked down maybe new ones?? At the end of the day they are not absolutely necessary although useful, from what you say your hubby is getting worse not better over time…and that should be the main focus now… good luck and please let us all know how you get on x

I note your comment of not wanting to appear pushy…I’m afraid you have to be,and as you can clearly identify that your hubby has been treated so badly so far,the least they can do is to go full steam ahead on ensuring everything is tested quickly from now on,and that every result is clearly explained.

If you look up vit d deficiency you will see the problems it can cause that could be confused with ms symptoms,however many people with ms have low counts and take supplements.

The coeliac test I assume is because he is having stomach/bowel problems and pain. Is it a condition in the family? If he is coeliac at least a change in diet will bring instant relief.

As for your need for support etc and a place to let it all out…thats what we are here for.

All the best.

Pip

well not got much to add at present, rang one of my husbands consultants to get all the reports sent to our doctors, they are doing that, appointment with doctors on Tuesday will let you all know how it go’s, at present things are pretty bad, I hate to see gary like this, I wish I could make everything better, but!!! hes struggling with his legs and feet, food dosnt agree with at the min, we went for a walk tonight (bless him he does try for me because i enjoy walking) and as we were walking i saw a look spread across his face, and i asked him to try and describe to me what was happening, and he said he has to concerntrate really really hard to make his legs go were he wants them to. BOY do I take thing for granted, I just walk, I love him so much and just want to get something sorted, know most of you folks are either suffering or going through this aswell, let me say my admiration no’s no bounds for everyone,

am going now before i get upset will keep in touch stay safe everyone xxxxxx

Anne

xxxxxxxxxx

Hi hope everyone is having a few good moments, have been to the doctors with gary today,had the results of the blood tests back, all negative for cealics disease and vit d diff, he hasnt heard back from the nuerologist (theres a surprise) still keeps saying it looks like MS but still wont give any treatment, wel!!! bottom line, when we went in the doc had a programme on lymes disease running, discussed this and then took some more blood to run for that, I have seen on some sites where they do actually recommend this test be done, so we have to wait another 2 weeks for the results before we see him again, me and hubby have been having long long chats, and at last he explained to me his fears, and me to him,he seems to have taken on a more relaxed (relaxed as you can be) air to him, as though as he explains it, he truly does beleive he has MS and all these test will just go to prove it, he says he waited 12 years for someone to listen, and at last they are, the doctor even told us as we left he said “Ive known you and anne for a long long time, and i will get to the bottom of it, I will find out what it is” so heres to another wait, but for me knowing my husband is getting the attention now and the support of all of you another 2 weeks dosnt seem that far away, Thank You All xxxxxxxx just for being here stay safe xxxxxxxx

I am glad you and Gary have moved forward. Good luck to you both Ppx

[quote=“pip”]

I note your comment of not wanting to appear pushy…I’m afraid you have to be,and as you can clearly identify that your hubby has been treated so badly so far,the least they can do is to go full steam ahead on ensuring everything is tested quickly from now on,and that every result is clearly explained.

If you look up vit d deficiency you will see the problems it can cause that could be confused with ms symptoms,however many people with ms have low counts and take supplements.

The coeliac test I assume is because he is having stomach/bowel problems and pain. Is it a condition in the family? If he is coeliac at least a change in diet will bring instant relief.

As for your need for support etc and a place to let it all out…thats what we are here for.

All the best.

Pip

[/quote] I had a test for coeliac disease a couple of years back as my mother has it, and she insisted that some of my symptoms were symptoms that she too had suffered from. It came back negative but I guess it’s worth looking at everything. So sorry that you’ve been thought so much rubbish. I got messed around by my first consultant but thank god he passed me to his colleague, probably because of my husband’s insistence. My consultant now is great - he is the one who gave me my diagnosis. Unfortunately, because the MS nurse from his hospital can’t see me because of the area I live in, it looks like I may have to switch consultants again, which is bloody rubbish. All the best. I hope your husband gets some relief soon. X

I am so pleased to hear that you & Gary have been able to share (it can be such a relief!) and that you are finally getting the support you deserve. I hope that things start to move quickly at long last. Karen x