Do I need private MRI Scan. Struggling & lost with my condition

New diagnosis and before diagnosis
1

I really need help and support here from MS patients before I go spend the little money I do have on private MRI Scan as my GP is refusing to scan.

I am 35 year old male and have gone from healthy fit, active individual to now severely struggling with number of symptoms. Something is happening to me and its severely impacting my life. I am scared of the future and how I can provide for my family if things dont improve. Let me explain whats going on so hopefully you can provide recommendations/support as I am lost with my GP. I appreciate you are not a doctor but I strongly believe patients understand there condition better than any doctor.

Fatigue - unbelievable severe fatigue where I have days when I feel ive ran a marathon. Having ran a few I know the exact feeling. The fatigue is there constantly but I have periods of remission and then relapse. I could be fine for a week then all of a sudden the fatigue sets in. Its horrible. I know the difference between being tired and fatigue. This fatigue is there before I do anything and its hard going. I cant explain how hard going it is. There are no words to describe how exhausted i am at times.

Weakness - I have severe weakness, aching, burning and numbness in my legs. It impacts daily activities such as walking. I feel like I have weights on my legs or walking in swimming pool with great resistance. My leg muscles twitch. Ive noticed blue veins starting to be more prominent. Was thinking due to lack of activity im losing weight which I cant afford to as im light anyway. I get this numbness in my feet with shooting pains. I also get shooting pains in my head but less so these days. Pain behind knees alot.

Dizziness - This has been a scary symptom for me as ive never experienced being dizzy before. Feels like I am about to pass out. Its a strange sensation where I dont feel with it at all. I need support and have to hold onto something when it occurs and although the dizziness stops I still feel spaced out.

Unrefreshed sleep - I wake up some days and feel normalish and then next day fatigued. Like I need to sleep but I cant sleep anymore. Sometimes its an effort to change gear in the car which sound pathetic.

Bladder - I struggle to hold my bladder in when full. It makes me really uncomfortable and sometimes it leaks out. I urinate over 10 times a day. I pass bowel movement every 3 days so its slowed down.

I have had all the blood tests which have came back normal. I have been diagnosed with CFS. I have had number of infections lately. 3 ear infections, ecoli 0157 and campylobacter food poisoning last year. I have had lyme test through NHS which was negative. Vit b12, vit d and foliate, gluscose normal.

I have absolutely no idea whats going on. I thought CFS was brought on my exercise. I dont do anything and the fatigue is here. The cramping aching weak legs, fatigue and dizziness are the main symptoms that impact my life. The numbness in feet and legs come and go hence why GP says its not MS as numbness wouldnt come and go.

any suggestions would be greatly appreciate

Thanks,

David

2

Hi David,

Sorry to wa your problems. Has your GP explained why they aren’t referring you for an MRI/ to a Neuro given your symptoms? One option may be to pay to see an MS neuro privately (cost of £150- £200) and outline your issues with them to see if they think it is worth further investigation. I expect you would need to do this step to get a private MRI in any case, but an expert opinion from a specialist based on a clinical exam and review of your medical history may not be a bad place to get some reassurance of the next steps.

Kat

3

Hello david.

Have you tried seeing a different doctor at the same practice? I did this, had a really sympathetic doctor who took time to listen. I was lucky enough to have an MRI scan within a month. ( not so lucky- the results came back on Friday showing definite demyelination - waiting for official explanation / diagnosis from neurologist)

Maybe worth a try?

if not I would go for it privately… Although it wasn’t the outcome I had hoped for, at least I now know what is happening and I know that I have not been imagining the past few months / years symptoms.

Best of luck!

4

Hi Kat

Thanks for the reply. Appreciate you taking the time out to reply.

No idea where I can get a Neuro private consultation from. Any ideas? TO be honest I have found one company that will do a brain MRI scan without referral at a cost of £700 :frowning: I am this close to paying for it to get some answers with a hope of a path to get better. That way I will know if I am dealing with CFS.

My GP not willing ot referr me due to the fact he thinks MS is not the case. He said I have no vision issues and no severe numbness if my hands or feet which would warrant referral. He has lablled me with CFS and sent me on my way. No medication, no treatment plan nothing. Im struggling to work and feel like each relapse I get worse.

Thanks again.

Wishing you well

5

I too for years had suffered in silence, so to speak. When I had issues I put it down to getting old and being out of shape. I never even thought of MS, didn’t even know what it was really. Once I was diagnosed though and I looked at the symptoms it all fell into place. I too have a doctors surgery where one of the doctors, who I managed to see, was very dismissive as though referring me would come out of his own pocket, but the other GP I have been seeing is much more supportive and helpful. I would definitely get a second opinion. Surely there are means to be able to obtain a second opinion without having to go private. I am fortunate that my employer has a BUPA health plan in place for us but surely access to another GP for another opinion should be fairly easy.

6

Hi David

To clarify, CFS/ME is not brought about through exercise, it commonly occurs after a period of ill-health. There is some research to suggest it is as a result of a virus, and indeed may be linked to the same virus (Epstein Barr) which may be an contributor for MS. CFS/ME share many similarities of MS - many of these are what you describe above.

In terms of paying for an MRI, I have recently done this as do have some bilateral permanent numbness, together with other neurological symptoms (for background I was diagnosed with mild ME 25 years ago but up to recently, have been fairly fully functioning). The cost was just shy of £600. However I have no answers and am now undergoing further tests. In any event, for a neuro referral you are likely to still need a GP referral.

Can I suggest if you are worried about MS and wish for this to be ruled out, you return to your GP (is there another you can see in the practice?) and ask for a private neuro referral. This may then allay some fears and at least either rule MS in or out.

If you’ve been reading the forum posts you will no doubt have noticed that any diagnosis of MS can be a long haul. I do appreciate it is important to put a name to your symptoms but many are living long-term in limbo with symptoms such as ours. Out of interest, have you been seen by a CFS/ME specialist?

All the best

Jane

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PS. The £600 was for the brain/spine MRI. A private neuro was £250 for the initial referral and £125 for follow-up post-scan.

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Morning all,

Thanks for taking the time out to provide recommendations and support. I really appreciate it.

So I have seen 2 GP’s and then was referred to the infectious disease specialist who basically told me the same that I have CFS. He did no other tests different from the GP. Didn’t check my mitochondria, ATP, Magnesium, CoQ10 etc all of which contribute to dysfunctional mitochondria and can sometimes be clear indicator of CFS/ME. I did sports science degree 10 years ago so I have some knowledge on energy systems but clearly im no doctor J. I explained my concerns regarding potential MS, Lyme or similar condition and he said “squeeze my hands” of which I did and he said “you don’t have MS” I almost laughed. I mentioned my concerns with the neurological symptoms of leg numbness, weakness, shooting pains etc and he said he could not diagnose me on those as he isn’t a neurologist but refused to refer me. He closed the appointment by saying “you have CFS and there is nothing we can do as no treatment”

I have been told by my GP there is no CFS specialist and I have to just deal with it. There is nothing for CFS. This scares me as some days I really do struggle. Im 35 years old not 90.

Prescan will do MRI brain scan in Edinburgh and it costs £700. This does not include the spine. Is this an issue? £700 for a scan oh me L. I will go back to GP and request further support and see where it takes me. Just to note I had a tick bite last july in the Scottish highlands. Week later I had flu like symptoms (no rash) and was treated with 2 weeks antibiotics. 3 weeks after antibiotics I was tested for lyme which was negative. I haven’t given lyme anymore thought until now as I guess you start playing doctor looking for things when the target you with the CFS brush.

My grandma had MS, my grandpa had ALS. My aunty has MS also. This does not impact GP decision to refer me.

Where would you recommend getting private scan? I am based in Aberdeen and the cost here is ridiculous. Happy to travel anywhere in UK.

Thanks again everyone.

Have a good day

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Hi again David

With your family hx I’m surprised at the lack of neuro referral to be frank - I’ve definitely push for this. Maybe take a partner or friend along with you for support.

I do think a diagnosis of CFS risks being a ‘catch-all’ which can translate to an uphill struggle then with any other health issue.

Re the MRI my neuro referred me for a brain and spine MRI. This may have been due to my presenting symptoms but from what I understand of MS, lesions can be spine only.

I am well down South so have no idea on recommendations for you but maybe a new thread asking for recommendations in your area would be a good start?

Jane

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Hi David

You need to see a Neurologist first of all [GPs cannot diagnose MS - I doubt an Infectious Disease Specialist could either, and certainly not by doing a simple test that is used to get an idea if someone may or may not be having a Stroke] if only to rule out MS for certain as the cause of your symptoms, the Neurologist will decide whether or not to go for MRIs etc. Write to your GP (if you have not done so already) and demand a clear written explanation as to why they are refusing to refer you to a Neurologist when you have a family history of MS and that your symptoms could be those of MS.

Yes numbness can and does come and go, depending on which part of the CNS is affected and to what degree. Your GP is probably in the camp that still believes that MS is a ‘painless’ condition.

Check out the Neurologists at your local NHS Hospital - many, if not all of them, do work privately.(Their details including contact numbers for their offices etc. will be on the NHS Trust website). Contact their office and ask the price of / book an initial consultation. Once you get there, explain that you cannot afford any follow up scans/treatments privately and ask to be put on their NHS list.

Good luck.

11

Hello all,

Hope you are all well.

So I have some news. Considering I had MS/Lyme type symptoms I decided last week to test for Lyme disease using Armin Labs Germany of which has came back positive. The test was the Elispot test which is 20-200 times more sensitive than NHS standard tests. So I have Lyme disease.

But Lyme/MS very similar so I am still going to go with your recommendations and speak to Neuro GP. I hear lyme patients can show lesions also. Plu my GP will not provide antibiotics for lyme since it wasnt NHS.

Let the fight begin! :slight_smile: