MS help please

Well it's taken 7 years of feeling like I'm going mad /hypochondriac even.. Patronising doctors asking if I'm happy ,Sad ,,stressed ,depressed -7 doctors and 3 consultants later I have hypothyroidism ,hasimotoes and MS . I had to push for the brain scan as neurologist thought standing on one leg ,touching my nose ,walking in a straight line Ment I was fine - this is not neurological he said ,not listening to my list of symptoms .I want a brain scan I said ,you don't need one it won't show anything . Well he said if you insist and I'll discharge you ,I won't need to see you again he said. Well he was wrong . at last I can make sense of the terrible times I've had and am still having . Awaiting treatment and second brain scan .

53 Replies

  • As you are in a round of testing, get them to test you for Hughes Syndrome/APS as a lot of the symptoms are similar and even lesions on the brain can look similar, the tests are very simple for a GP to do, however do the tests at the hospital as the samples taken are time sensitive. I also enclose the list of recommended specialists in case you have a positive result:


    2. in this link about MS like symptoms:



    and a newspaper article:

    Best to rule it out, as you would not be the first to receive the wrong diagnosis due to the similarity of symptoms.


  • Thank you Mary ,my gp said it is MS so not sure what's in my notes .I keep wretching I'm so exhausted and now have a facial rash . I will bring up what you have sent me ,I'm having a second more in depth brain scan Feb .Ive taken some time off from work to rest.

  • Unless it occurs to a GP to look they will not know, hence the blood tests, it was recently debated in the House of Lords due to the dire rate of diagnosis:

    Please insist on doing the blood tests, they are cheap to do, then you can at least rule it out. MaryF

  • Thank you Mary ,I've had bloods done and diagnosed MS already this week , I'm just so frustrated it's taken so long .

  • Sorry jkoo4 - but what are the tests for MS ?

    Have you had your VitD and B12 tested along with all the others that you have mentioned. B12 Deficiency is a neurological condition and many people are diagnosed with various conditions like Parkinsons and MS when B12 is very LOW. The same with VitD. It would be so sad if these basic tests were neglected as they are easily remedied and could help you a great deal. Please do some research when you feel stronger.

    It's a bit like the Thyroid - its performance can be improved with the correct testing and supplements. Our bodies are complex and do need help.

    Scroll down for the signs and symptoms of B12D.

    I was only reading yesterday about the effects of the Thyroid anti-bodies on the brain - in fact someone posted about it. Did you see it ? Will try and find it.

  • thank you ,yes i have had all the bloods done ,endo did all interesting and wonderful bloods .Its my brain scan that has convinced them it is MS as well as iv'e been so ill. this week i had my results for the brain scan -bloods and throat ultra sound came back hashimotoes ,hypothyroidism which I knew i had for about 2 years ago or a lot longer .

  • Is this the thread you're looking for?

  • Yes thank you GG - it is. I posted it further down yesterday as the Edit button would not allow me in ! Long threads do get confusing !

    I sometimes think my ataxia is caused by the anti-bodies - but then it could be the B12 :-)

  • Yup. So difficult to know what is what. Which is why we have to cover all the bases. And, of course, it could be more than one thing at a time! We have to look after ourselves!

  • I'm a great believer in at least testing all the things that have been mentioned on this thread and others to rule them out as being the cause of so many serious much easier to treat a B12 or VitD deficiency than something more serious.

    As you can see MS is featured in the above chart......

  • wretching and a facial rash is more like Lupus or Aluminium poisoning

    Are you using Aluminium cookware or non stick coated or foil or electric breadmakers,George foreman grill

    is your water supply treated with Aluminiumn salts of any kind or Alum or Flouride

    Such insidious poisoning can easily resemble MS and far worse

    I know I have been there

  • thanks for reply ,no the brain scan lesions have shown i have MS. I also have hasimotoes and hyperthyroidism .Im retching because i'm so exhausted and trying to carry on with my full time teaching job.I drink purified water,never tap water.No i dont have coated cook wear such as Aluminium cookware or non stick coated or foil or electric breadmakers,George foreman grill .I try to eat well .this has just been ongoing for 7 year . thank you

  • The Vitamin D Council recently referred to research suggesting high dose of vit.D helping MS symptoms.

  • Thank you ,I will look into this x

  • Ah I'm sorry to hear if the awful time your having . My hubby has ms I have hashi plus waiting to c rheumy because of a list of symtoms . My husband had a lot of tests before they confirmed ms . MRI / lumber puncter/ also electro magnetic testing . Try not to worry to much because every person is different . My husband is still staying positive after 12 years an very motivated to beat it . Sending you positive vibes 🌸😊

  • Thank you snooze xx Is hubby on medication ? Does he seem better with it and made any difference to him ? :)

  • Yes he takes low doze naltrexone an had started baclofen to ease muscle stiffness . But u can honestly say he never is sick with cold flu etc . Sometimes he gets tired but has learned to pace himself . He is a very calm easy going person which I think has helped him. But most of all stays motivated with a positive attitude . He always says it could be worse that lots of people have there troubles 😊 Hopefully that explains a bit what he is like . Please try to stay positive x

  • Thank you ,I;m just glad they have last found what is wrong with me.I just want to be able to go to work and socialise again .I have worked and just slept for 7 years only taking a few days to try and recoup when ill but this has got more recently -the last year or 2 .I haven't been out for ages because I have to rest all weekend I hope when i get meds i will get a more energy and less symptomes such as aching throbbing legs arms tremors etc . Even holidays have been spoilt by me sleeping most of it.

  • Well if I can answer anything for you feel free to ask anytime . I think not knowing is worse at least you can now get the proper treatment to move forward . When you feel up to it check out paleo diet . Jack Osborne seems to have done fab from it . Although he prob has his own chef 😄 Best wishes

  • HI jk, yes, look into low dose naltrexone (LDN), it has lots of good reviews particularly for MS. Also B12 even if it looks to be in range, could be deficient.

  • thank you so much Heloise x


    Edit button will not allow me to Edit ! So have added this link on its own....

  • thank you x

  • I cant tell you how disgusted I am!--- the arrogance is unforgivable, I hope you are going for medical negligence, I wouldn't be letting them get away with that.

  • thank you ,This has been mentions as my husband is very angry at the life I have not had for such a long time ,I could have been on medication for years that would have helped me xxx

  • dr david carr a must watch lack of b12 and wrong diagnosis. and a young boy with MS but it was b12.

  • thank you Bluepettals x

  • and also with b12 if you don't have enough intrinsic factor or active b12 or have high homeocystenine you wontabsorb b12, just because the levels says tyou hav enough doenstmean to say you , its a constant be yourown doctor these days.

  • Might be worth a look to see if HealthUnlocked have a MS forum

  • thank you silver fox X

  • Multiple Sclerosis is mentioned on this community :

    Quote :

    "The LDN Research Trust was set up by a small core of people who have Multiple Sclerosis. The primary aim of the Trust is to initiate Clinical Trials of Low Dose Naltrexone. Whilst working to raise funds for trials, we have helped over 16,000 people to obtain LDN from a General Practitioner or Neurologist, either through the National Health Service or by private prescription. We have also been able to help people, not just in the UK but in countries throughout Europe, as well as USA, Canada, West Indies, Australia, New Zealand, and others. By using this website and from our downloadable newsletters, you will be able to read the stories of some of these people. We have helped many people with MS, Crohn's, IBS, ME and Cancer to name a few. The use of LDN is spreading. Our ultimate goal is for everyone to be prescribed LDN globally for all conditions where LDN could be of benefit,"

  • Thank you x

  • Hi jkoo4

    This is happening to much on the NHS..the same thing happened to my mum..about five years ago she and myself knew something was wrong with her through her symptoms..also the right leg was turned in she found walking became so bad..I eventually got the doctor to send her to a specialist..took some doing he constantly to us their was nothing wrong with her..after several sessions with the consultant..who also said he could find nothing wrong..I became angry..she was not well...jesus im not a doc or consultant and I could see she was not well..they eventually agreed to a scan and an electrod test on her muscles..after a couple of days we were called back to be told she had motor neurons.she died just under a year..why is this happening..same thing happend to my dad..he went back n forth to the docs with loss of voice..doc said he had laryngitis..he was like that for over a year..had to get angry wid the doc..he reluctantly sent my dad to a specialist who diagnosed throat/lung cancer..he died five years later..too much miss diagnosis on the NHS...


  • Totally agree . My mum died with mnd also after lots of trips to the doc she was advised at one point to see her dentist that mabe her dentures needed replaced 😡

  • So sorry to hear this Birkie ,such a shame to had to witness this . They are not listening to their patients are they . Xxx thank you for your reply xxx

  • jkoo4 I'm really sorry to read of your lack of care and this diagnosis, but I'm wondering about the MRI if you're now going to have a second one, especially as the neurologist didn't think you had MS from his basic tests. Did your GP say you had it, or did the neurologist say you had it, or was it the radiographer's report? There could be a difference here. If you're now going back to the same neurologist and if he seems at all hesitant about the results, you could ask him for trimodal evoked potential tests as well as the other MRI, to confirm it and even a lumbar puncture if he's still not sure. Better still a different neurologist might be more suitable! The trimodals are simple tests of response to electrical stimulation of eyes, ears and limbs. I have experience of this and of the fact that what a GP sees and what a neurologist sees can be different!

    MS mimics other things so I hope you get a definitive result, it also seems to be different in everyone and not one particular condition, but probably different things which happen to cause the same groups of symptoms. Dr Skinner considered that everyone with MS should be treated for a thyroid problem regardless of whether or not their blood tests showed hypothyroidism. He thought that thyroid hormones helped a great deal so I also hope that your thyroid is treated by a really knowledgeable doctor - I know :( are there any out there!

  • My doctor GP gave me the result from a report and conclusions at the bottom it said follow up DWI&/- contrast is recommended . not sure what this means .

  • They're going to do another MRI using a specific technique to identify what they are seeing more accurately. DWI = diffusion weighted imaging which measures fluid and according to the link below that has more or less superceded the use of contrast injections. The contrast agent is gadolinium and if it shows up in the scan then it means the blood brain barrier has been compromised. It looks as if they've possibly asked for the contrast if felt necessary at the time (&/-). Did they take you out of the scanner part-way through last time and give you an injection?


    It's worth knowing that if MRIs are done privately then the cds of the MRIs are yours to keep and if they aren't offered to you then you should ask for them. If MRIs are done by the NHS then they are the property of the NHS, but I would then always take a blank disk into the next appointment and ask for a copy of the MRI to be burnt to it. I think it's important to keep records of all tests for some time in the future when they may be needed, just like blood tests.

    Best of luck to you, I hope the next MRI is arranged quickly so you're not left waiting. Do please let us know the results!

  • no they didn't take me out the scanner ,it was done at 7.30 at night and I was the last patient -think they couldn't get me out quick enough to get home. thanks I will xx it was done one the NHS .

  • In that case they didn't do the contrast last time which, as far as I understand but I may be wrong, they should have done if they were looking for MS. Also it should have taken about 45 minutes. I hope it was a good modern scanner, fairly short but wide and open at both ends, and not one of the older long tubular ones, open only at one end.

    I understand the diagnosis you were given and I understand your need for a diagnosis, I've been there :( but I also know there are other possibilities and that once you have a diagnosis other things may not be looked for and everything may be blamed on that one condition.

    By the way, have you been tested for coeliac disease?

  • As far as i know i had a blood test for Coelliac disease ? not 100 percent sure .Not sure about the scanner it was a mobile one ,they have blamed my symptoms on hashimotoes and hypothyroidism and not looked for other things . I had to push and push for this and they are still messing me about .

  • I really do hope that they arrange the next MRI quickly for you, it's awful not being taken seriously for years and then left hanging around like this. It would be worth checking you were tested for coeliac disease and also what the exact results were of your B12 tests. The NHS ranges are a bit low and recently they altered them so that that the top level is now below optimal in some parts of the country.

    Good luck :)

    I'm editing this to say that I've just realised you said it was a mobile scanner, are you likely to have the next scan in the same one? If so, and if I were you, I'd ask to go to the nearest hospital with a static state-of-the-art scanner even if this meant a journey. I'm really serious about this - I've had 8 MRIs over about 16 years, for three different things, the latest was in December and the surgeon who arranged it told me that one of the previous MRIs (which I'd taken him on cd) was done in an old open scanner (I get claustrophobic so had specially asked for an open MRI) and was so indistinct as to be very difficult to analyse for his particular purposes. I had no idea of that at the time it was done 8 years ago for a different specialist. Please, please understand that I'm not saying the one you had done wasn't useful, but more that this is such an important diagnosis that you want the very best imaging available to you.

    I'm keeping my fingers crossed for you!

  • Hi jkoo4, six months ago, I suggested you get your vit D, vit B12, folate, iron and ferritint tested. Did you do that? Can you post them on here and let us have a look?

    I know you're happy to finally have a diagnosis of something, but the problem is, doctors often make mistakes, and it's best to cover all angles.

    In a past post, I noticed your FT4 wasn't all that high, and your TSH wasn't all that low, and you said you were going to increase to 100 mcg Levo. Did you do that? Did it help at all?

    But the one thing here that is significant by its absence is the FT3. Could be that you aren't converting very well. So no matter how much Levo you take, you still won't feel well.

    If I were you, before accepting any diagnosis, I would make sure I'd had my FT3 and all my nutrients tested - and you can add zinc to that list - especially B12. Because B12 can cause absolute havoc with the body, and the doctor will have no idea what it is because they just Don't learn about nutrients. B12 deficiency will not only make you tired, it could put you in a wheelchair like a dribbling vegetable, and the doctor will try all sorts of diagnosis, but will really have no idea. Sorry to go on about that, lol, but people Don't realise how very important this humble vitamin is. :)

  • HB 139 range 115-160

    WBC 4.6 range 4-11

    PLT 251 range 150-450

    HCT 0.43 range range 0.37-0.47

    RBC 4.83 range 3.9-5.6

    MCV 88.9 range 80-100

    MCH 28.8 range 27-32

    MCHC 323 range 320-360

    neutrophils 3.4 73

    lymphocytes 0.3 20

    monocytes 0.2 5

    eosinophils 0.1 2

    basaphils 0.0 1

    antibodies negative

    endomysial antibodies normal

    tTg-IgA <2 range 0-15

    zinc 13.6 range 10.7-17.5

    vitamin D

    86.2 range 50-140 adequate vitamin D

    TSH 0.83 range 0.27-4.2

    rheumatoid <14 range 0-14

    serum IgG 12.10 range 7-16

    serum IgM 2.20 range 0.4-2.3

    Gerum IgA 3.20 range 0.7-4

    CRP <5 range 0-5

    cortisol 478 range 101-536


    Angiotensin converting Ensyme

    17 range 12-71


    i think this says 19 or 29 its very faint ink range is 3-15

    Doctor gave me the results of brain scan that had been reported and conclusion.

    sorry i hadn't updated my bloods before as i had given up.

  • OK, but where's the vit B12, ferritin and iron? They are very, very important, and can cause all sorts of problems if deficient. :)

  • I will contact GP Monday for these results and post them ,thank you for your reply .I feel terrible and no further forward from day one. I'm very pale ,facial rash ,exhausted ,muscle ache ,odd sensations in lower legs and hands and face ,feel very sick .No bowel movement.something is wrong .

  • You poor thing! It's possible you also have low T3. TSH is a very bad guide to thyroid status. It really would be a good idea to get that tested privately, if your doctor/lab won't do it.

  • Odd sensations in hands, lower legs,and face are potentially symptoms of low b12.

    Although there could be other reasons, that is a possibility you may want look into.

    The Pernicious Anemia Society website has a list of symptoms and information about testing.

  • jkoo4 - you told me earlier in this thread that you had been tested for everything - but I cannot see the B12 test result. If low it can be a neurological condition and needs to be around 1000. Do ask for this test to be done asap. I have been left with spinal damage and other unpleasant symptoms due to LOW B12 that was left untreated - around the 300 mark.

    I also posted above the link to the B12 Deficiency Signs and Symptoms - do hope you managed to look at them as you can see the Neurological List is quite long. Also others have mentioned B12 and posted valuable information and a video.

    It is important to rule out B12 deficiency just in case. There is not enough knowledge at GP level. Also as others have mentioned VitD needs to be optimal.

    With Hashimotos it is common to have Low B12 - VitD - Ferritin and they need to be optimal for the body to function....

    Look to the right of the page on the above link for more research papers.

  • I have and all were fine or so the doctor said ,I have only printed the results I had October ,I will post my last B12 ,iron and ferritin Monday xxx I'm having my bloods done again Tuesday as well.

  • Glad you are on the case ! It will be interesting to see what your Doc thought was fine. After 4 years on this forum - what they think is fine - often means in range. However WHERE you are in the range is key to improved health. Sad but true :-)

    Will look out for your other results. If you are supplementing B12 then there is no point in having it re-tested as the results will be skewed.

    Sorry to be a nag-bag !

  • Perhaps you have posted elsewhere - sorry ! Wondered if you had seen this link I have just posted in a new post about B12 and MS....

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