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Neurologist appointment yesterday

I went for my long awaited appointment yesterday ( suspected ms since 2008). He did a neurological examination. I told him about all the new symptoms from Jan this year and he ordered bloods and an MRI (the one he ordered in July 18 never happened). I have not had an MRI since 2015 when they found excvessive white matter lesions on my brain and cervical spine.I asked him about this he said it’s probably nothing to worry about, (I’m 36).He said to come back on July 2nd after the MRI. He said he would write to my Gp with recommendations. Still frustrated amd in limbo. Currently still on 2,700mg gabapentin,30mg baclofen,1050mg naproxen,duloxetine 30mg, and 200mg SR tramadol per day My symptoms are getting worse, I can even stand the burning is killing me. Lina

Hello Lina

It sounds like you are really hacked off with your symptoms and this seemingly non-event of an appointment. The trouble is that all the neurologist can do is get a new MRI scan, have blood’s taken to check for anything untoward and then arrange to see you again to discuss.

An appointment in early July probably allows time for the referral to the MRI unit, for them to fix an appointment, for the scan to take place and the radiologist to report on the scan. (2 months seems relatively quick, but I know from your perspective it seems impossibly slow.) Then your neurologist can consider everything altogether, the blood’s, your history, physical examination and MRI. That’s the point at which you might get a diagnosis, or at least, an idea of what the neurologist is thinking it could be.

So there’s not much more that you can do, except see your GP again and get a complete review of the medication you are taking and for what symptoms. It maybe that you could try some different drugs which could help more.

Sue

Thanks Sue, I agree 2 months is quick. I am just going to wait and see. I will see my gp next week sometime then I may have an idea of the neurologists recommendations. I am just glad things are moving again. The not knowing drives me crazy. Lina

OMG you are taking a lot of medication. Surely the amount of Naproxen is wrong? I thought it was for more arthritis pain. Also tramadol.

I think your GP is missing something if your in this much pain, have you been tested for other diseases like RA etc?

I take one paracetamol and asleep lol.

I am just more worried the amount of stuff your hun, which could be masking something else.

2 months is nothing to wait i waited over 10 years hun.

Have you had your inflammatory markers checked?

As to burning pain i get it constantly sometimes i feel like my body is on fire.

I know i have slipped and eaten something with gluten and wheat in it. I had tests done and they found i was sensitive to gluten, wheat, rye, (lots of other things and bakers yeast lol).

If i eat gluten my legs burn for England.

Look at your diet, try and reduce sugar, as well. Sometimes adjusting your diet can be more helpful then tablets.

My daughter is on a lot of drugs and now coming off Lyrica slowly and she has already got more energy.

Try not to stress too much diagnosis can be such a long road honestly i never gave up. I said to my husband if it is MS it will finally show itself and it did.

Big hugs, 2 months goes faster then that. xx

I see you take Naproxen. How long have you taken that for as it’s meant to be used for 10 days at the most. I went to hell and back with neurological symptoms due to being on it long term. So do check the side effects of the drugs you are taking.

Hi crazy chick, I am on alot of meds which I am very concerned about. In the 11 years of seeing neurology and having symptoms I never have taken so much for pain. It’s quite unbearable. I have been checked for alot of things over the years I can barely remember.I am looking into diet too. Thanks Lina

Hi Horsemad, I have taken naproxen off and off for 16 years. The current lot only since Feb/March. I never knew about naproxen causing neurological side effects. Thanks Lina

Hi Lina, i think you need to be referred to a pain clinic, and have your med intake assessed. You are on a lot really and Naproxen is a medication which is not meant to be taken long term. It isnt good for your stomach i noticed you havent mentioned you are on a supporting drug for side effects of tablets like omeprazole. Naproxen is an anti inflammatory medication, my son in law takes it short term when in a gout and RA flair. He always has to take omeprazole with it.

then tramadol is a strong med too for pain.

Can i ask what pain you are in, is it arthritis or something as well as your neurological issues.

I just think you are taking a lot which is really not good for you. xxx

Excellent advice from Crazy Chick and Horsemad. It’s possible that the medication has actually caused many, if not all, of the symptoms you suffer from.

If I were you, I’d make an appointment to see your GP specifically to talk about the drugs you are taking and to get a referral to a pain clinic as CC suggests.

It is probably going to be painful coming off these drugs, but when you think about it, they’re not actually working as pain relief.

Just think, you could be pain free and neurological symptom free if in fact the drugs are causing the symptoms.

Sue

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I have only been on these medications since pain started, my naproxen is gastro resistant. I have had symptoms for over 16 years, definatley not because of naproxen. Not saying it does not make symptoms worse at this time. I must say I was shocked. I took it in past for my herniated disc, sacrolliac joint dysfunction and facet joint disease. To be honest I am not usually a med person and because of the pain I take these tablets. I would prefer not to take naproxen I ran out 3 days ago and I’m not in a hurru to order more after reading all of this. Can you believe I was refered to the pain clinic 9 years ago by neurologist and can you believe like everything else in my case it never happened. Really getting fobbed of by the doctors and consultants and them throwing so much meds at me. Lina

I have not been on naxproxen long term, only since feb/march this year. I have had neurological symptoms for years without medication. These other meds are all recent too I hope that is a little clearer. The doctor added naproxen when I was just on baclofen and gabapentin.last time I had naxproxen for a few weeks before this episode was 6 years ago. I have had many neurological episodes over the years when not on medication and just dealt woth it. This episode started on January this year and is still going on. Lina

Morning Lina have you been assessed for hypermobility syndrome?

Sacroiliac Joint Dysfunction.

Too much movement (hypermobility or instability) in the sacroiliac joint can cause the pelvis to feel unstable and lead to pain. Pain from too much motion is typically felt in the lower back and/or hip, and may radiate into the groin area

Some of your symptoms could be attributed to Ehlers-Danlos syndromes.

My daughter who has M.E. was suffering terribly with pain in her back and hip, i paid for her to see a chriopractor as she was getting know where with doctors. He has actually diagnosed her with HS and thinks she has EDS. He has written to her doctor.

she has so many symptoms which could match MS, or even M.E. Weirdly enough my other daughter is suffering similar so she is off to see same guy next saturday.

Chiropractors also do a pain clinic assessment.

she has had one treatment and is feeling better already.

You need to see your GP asap, and ask to have that appointment with pain clinic. You said you were on naproxen and tramadol so must be in a lot of pain.

Gabapentin has now been classic as a Class 1 drug and it should not be described anymore without assessment.

I hope you dont think i am telling you what to do or criticising you in anyway but I feel you are being neglected by the NHS i am assuming you are in UK. My younger daughter was dumped on with preglabin at a huge amount and is barely functioning and i have finally got her to GP and she is slowly coming down off it, and would you believe it she is better already, doing more and going to deal with her horses more and having more energy and LESS pain.

sometimes these tablets are just there to mask what is really going on and also just take away our desire to deal with things.

Obviously you have a lot going on. You really need the proper help.

There is nothing that cant be sorted. Good for you for stopping the naproxen.

The trouble is if people are on a lot of drugs its difficult for doctors to determine what is wrong or how the illness affects them as it is all masked.

I hope you get somewhere but i would certainly go back to your GP and get that appointment ok. xxxx

I was on Naproxen for joint pains, Omeprazole and Ranitidine for stomach problems, had really bad IBS, had colonoscopy and gastroscopy to check out all the gastrointestinal symptoms, Codeine, Paracetamol and Atenolol for migraines. Now have had MRI scans reported as highly suspicious of demyelination secondary to MS (although due to my refusal to have lumbar puncture, long story, brother had MS and was severely affected by LP, although one Neurologist told me I had MS another one now backtracking and saying that it is only possible MS). Researched, google of course, and found book by Dr Terry Wahls, who has MS. Decided to try out her suggestions and subsequently found a book called “The Whole 30” which explained the thinking in simpler terms. Can’t recommend it enough. My IBS is totally cured, joint pains gone, MS stabilised for at least a year. Please have a look at the book, it really is life changing. At first it looks really hard to do, but as it says, this is not hard, having cancer is hard or as I would like it to say having MS is hard. It is a challenge finding new ways to think about food but totally worth it. Good luck! There are loads of recipes on Pinterest too. Onwards and upwards! x

Hi, So I saw the neurologist in May he requested an MRI and said I am very disabled. He mentioned that the right plantar is extensor. He told me to come back on the 2nd of July after MRI. (I went into to hospital in May for 8 days) this was due to a thunder clap headache. I had a lumber punctre 2 CT scans and an MRI they sent the CT scans to Kings college neurosurgeons to make a decsion about a kink that was found in one on the arteries in my brain. The MRI and lumber puncture was sent to my neurologist at Guy’s and St thomas.I had another MRI at guy’s and saw the neurologist in July he said that my report was not back but the images show alot of lesions (I know this). I got a call from my Gp on the 5th July to say I need to see the gp to discuss my MRI scan that neurology did (appointment on Monday). The next day I got a call from guy’s hospital to arrange another MRI for further imaging. What could that be for? I am getting a bit anxious now I have the neuro physiotherapist coming to my house every week, occupational therapist every week. Some adaptions have been made to my home. I now have a wheelchair, mobilty scooter and perching stools etc. I am still on my medication (naproxen had been lowered) but I’m not taking it often anyway. I stil in alot of pain, burning sensations, mobility issues etc, the list is Long! So fed up and frustrated. Lina

You may have a spinal MRI to look for more lesions, it sounds that you have your hands full at the moment good luck on both things. Kay

Hi there I have been suffering from Duzziness and weakness in my legs for 3 months .I feel dizzy when I am walking and even sitting as if I might fall down . I feel pressure in my lower spine while walking and have to walk slowly as my legs just do the have any strength to walk.if I stand or walk 10 mins I feel dizzy and feel like fainting . When the symptoms started 3 months ago I had severe gastritis and nausea and Acid reflux .I lost appetite for 3 days then I started on proton pump inhibitors which graduaLlysfaen reduced acid reflux symptoms .I had cramping in my legs .they used to hurt all the time no matter how much rest I was taking.now cramping has stopped but weakness in legs is so bad that I am afraid of walking and standing . I had blood tests to rule out all defficiencies .I am not found to be deficient in anything .Vit B12, Heamoglobin, vitamin D , vitamin B1, Cortisol level, ESR, Complete blood count ,H pylori tests are came back normal .I requested my GP to refer me to neurologist due to my peristaltic weakness ,difficulty walking and feeling like I will faint anytime .does anyone had similar symptoms and got diagnosed with MS .I think I may have MS

Thanks Kay. The MRI and MRA was brain and cervical spine, would it be for the whole spine then?

Roopdeep, You seem to have alot going on at the moment. I also suffer with nausea, sickness and balance problems. My gp refered me to a neuro physiotherapist and occupational therapist who cone to my home regular to support me around my balance and mobility issues etc. My gp has given me anti sickness which I take when needed. I do not have a diagnoses but I have been seeing neurology since 2008!! I think you need to discuss with your doctor in depth so you can get the support you need. Lina

Hello

Welcome to the forum. You have joined on a slightly different thread to ask your questions. You might find you have more useful answers if you start your own. You just hit the New Thread tab, give it a title and ask away.

Meanwhile, you should be aware that many symptoms of MS are also present in other diagnoses. So while you’re linking your symptoms to MS, it is possibly more likely that there is a different cause.

You’ve done the right thing by requesting your GP refer you to a neurologist. The neuro will conduct a physical examination, go through your history and determine whether s/he thinks there is a neurological cause. If they believe there is, they’ll refer you for neurological tests, maybe including MRI, evoked potentials, nerve conduction and also a lumbar puncture.

Keep in your mind though that the neurologist won’t be looking to rule MS in or out, they’ll be looking at symptoms and physical responses to see what they think could be the cause.

It’s worth taking the time to write yourself a timeline of what symptoms you have, when they began and whether any have improved or stayed with you. It will help when the neurologist asks you to tell them what has been occurring over the last months.

Best of luck.

Sue

Thank you so much Sue and Lina for your comforting words and support . I really appreciate that you replied . I was feeling so disheartened as my father and mother are both GP India. They are also confused and not sure what’s causing my strange long term Dizziness and Weakness and Difficulty walking now. they are forcing me to come to India so that my condition could be diagnosed ASAP rather than relying on long on waiting lists on NHS