Back spasms getting worse...and NO dx yet..no one is listening..

New diagnosis and before diagnosis
1

Hi all,

I’m in so much pain with progressive muscle spasms in lumber spine, unable to walk without sticks, sit, stand…ended up in A & E last week, and doc stated its scoliosis in lumber spine…???

I gave up looking for answers from med profession, because I felt a fool, but the sypmtoms are worse than ever and more frequent, and yet i’m still cautious to see med profession again…

I have been fighting for some recognition from med profession. symptoms are as follows:

numb big toes, and other two toes on both feet, numbness goes to half way up feet.

DX with mortons neuroma in one of the feet, nothing done about it…or any recognition of MS

Previously told by neurologists that I don’t have MS, and to go away and live my lfe

On average every 2nd or 3rd week my back goes into spasm, the pain is excrutiating; morphine administered, Naproxen, Diazepam, and still no relief!!!

I have a previous neurological condition (AVM) which left me with epilepsy, so I am also on Lamictal

Legs unable to lift them and put one foot in front of the other without feeling like my back is going to snap.

painful limbs

Itchy rash skin (starts like hives - so not sure if relevant?)

Tightness in chest

If I sit, lie, stand for a very short period of time (eg, 5mins) my back, legs, etc lock.

Bladder weakness since 19 (now 43!)

Bowels over the past 12 months have become progressively worse…living on immodium; unable to get a happy medium, i’m either constipated, or have go to toilet excessively…GP said it’s IBS (without any tests done!)

Get tightness in and around stomache area when the spasms are bad…I always get tested for bladder, or kidney infection - but it always comes back clear…so confused as to why my stomache hurts so much when my bck is bad?

Limbs feel heavy - I feel OLD!!!

Unable at this moment to think of other symptoms…

Any help and advise would be greatly appreciated

Thanks

B.

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ps

A & E Doc said to go to GP and request CT angiogram. GP has referred me to spinal orhto consultant - but appt not till mid Oct!

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I’m afraid im not sure what advice I can give, there are people with more knowledge than me, but I will send you ((((very very very big hugs))))

xx

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Thanks…probably would help to hear other peoples symptoms to see if they are similar

x

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Hi Beverley,

I have very simillar symptoms, however not dx as yet…Had audio tests in June, get results Oct!!! Not getting anywhere with my GP he just fobbed me off, so I saw a different one explained about numbness, jerky restless legs, memory loss horride headaches…She sent me for MRI saying it sounds like neurological…Results back 5th Sept…

You just have to be firm with the GP, and tell them whats up.Only us know how we feel, and our lives have changed and we want to know why.

Jan

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Hi Beverley

I sympathise with you re the back spasms… I had them for a couple of months and the pain was excrutiating! One of the worse symptoms I have had. Very debilitating too. Cant stand, cant sit, cant lay down - cant get comfortable at all. My GP and neuro put me on Tramadol, Carbamazapine, Propranolol, and something else that I cant remember! Anyway, my point is that they all worked really well for the back spasms and I have gone from having continual spasms to maybe getting one every week :smiley: So much better!

I really hope you get some answers very soon. Maybe you need to see a different GP who will take you seriously and make you an appointment with a MS specialist? Seems to me that would be the best route to take for you.

Good luck Beverley

Paula xx

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Thanks Paula and Jan,

I can’t take tramadol - they make me trip out when mixed with the epilepsy meds lol.

I have a decent gp who literally sends me wherever I suggest…the problem is the other end of the line. I have been under neuros since 2005, and underwent radiation to the brain, but because the numbness was not avam related they just ignored it, and i guess so did I.

Anyway, when I evenrtually pushed my neuro to send me to one of his team who specialises in MS he was abrupt, rude, and left the door open and walked off when I was speaking.

I am very ;switched on’ to people and their behaviour, and this guy had my name marked because I had reported one of his colleagues a year prior due to a mis dx of a seizure and they guy took my driving licence from me for 12 months, so this MS doc had obviously read the notes and his heckles were up right from the off!.

I made him aware not to see me with a pre-set agenda or judge me for the doc who was not fit to practice due to something that my other neuro had told me, so my ead was hitting the brick wall from the offset, and I walked away and tried to fight through it…I still do fight it, but for the past 9 days \i have not been able to do a thing apart from get upset and worry…my daughter is home from uni and I can’t even take us out or go away due to the spasms and spasticity…

I’m so frustrated, but am not going to give up, because tis is my body, and I am determined that one of them will listen.

The ironic thing is that whenever I have been t see the neuro etc I have been able to walk, so I feel a fraud. My GP saw me like this last month (for the first time in 7 years) I have never got him to visit me at home because I generaly stick the pain out myself, and when my GP saw me he nearly dropped to the floor. He just stood there while it took me a good 5 mins to slowly edge my feet a little at a time in order to feel safe enough to try to get up on the sticks to support me to stand.

Sorry for the waffle…may just print all thia off and hand to the experts so that I don’t have to keep repeating myself lol

cheers ladies xx

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Excuse typo…typing quick to avoid further pain

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Hi Beverley and welcome to the site

Really sorry that you’re struggling to get some support. Tbh though, I think you might be trying to get it from the wrong speciality as your symptoms don’t sound terribly MS-like to me (e.g. MS does not cause itchy rashes and I’m not aware of any particular link between Morton’s Neuroma and MS) so I’m wondering why you don’t agree with the possibility that there’s an anatomical reason for your symptoms, or that they are related to your AVM perhaps? (I had to google AVM as I hadn’t heard of it, but it seems to be a vascular condition and not a neurological one, but that can cause symptoms that are similar to some neurological conditions?)

It seems to (unqualified!) me that you should be pushing for a referral to a neurosurgeon as a next step as your symptoms could be the result of a lower back problem and there may be something a surgeon can do to fix this. Even if they rule this out, it’s one less possible cause and so a step forward.

Btw, back muscles and abdominal muscles work together (e.g. one way to improve back pain is to strengthen stomach muscles) - that’s probably why you get a sore stomach during/after your back spasms.

I hope you get some answers soon.

Karen x

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Hi Karen ,

Thanks for feedback.

AVM in the brain (which I had) is a neuro condition. AVM’s can also be in the spine, face etc. The ‘experts’ say the symptoms are not AVM related, but…I am awaiting CT angiogram to eliminate spinal AVM.

There are no links to morons neuroma and ms hun, I was merely stating my symptoms, and that the mortons may have been a mis dx?

Re skin rashes: I have read on the MS website that one of the symptons is skin rashes??? and that is one of many of the MS symptoms that I can tick off because I have them :frowning: so i’m even more baffled after your thoughts lol.

Re neuros: As previously mentioned, I have been under neuro (due to avm) since 2005.

I’m aware that anteror, and posteria muscles are linked…unfortunately due to the avm and blood flow (and the fact that my mobility is zilch when it comes to exercise) I cannot do strengthening exercises.

‘chop wood carry water; chop wood carry water’ :slight_smile:

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Hi Bee.

Thanks for the correction on AVM being neurological. I’ve had another wee look on-line and can see that it’s related to stroke, so of course it should be managed by a neuro/neurosurgeon - I should have looked for longer last time; I can sometimes be too MS-focused! Your consultation with the MS specialist certainly sounds disheartening; a lot of them seem to have God complexes :frowning: Did he get round to doing a clinical exam? If he found any clinical signs, he should have been ordering tests no matter what his manner in doing so.

Ah! re the Morton’s Neuroma. I thought you were saying that no one mentioned MS when you were diagnosed with it. Mis-dx is certainly plausible; a lot of us get told the wrong explanation for symptoms (even when we have a diagnosis of MS!). Have you asked for an MRI of your foot? - it would add weight to your case if it were negative.

I certainly don’t know everything about MS, but I have never heard that MS directly causes skin rashes, although it can cause itching. What site was it that you read it on?

I wasn’t actually recommending exercise; rather giving an example of how the abdominal and back muscles are linked and therefore how your stomach pain might be related to your back spasms, but how awful that you cannot exercise! It is very important in the management of MS, and many other conditions I would imagine. The MSS have produced an exercise DVD that is doable for people in wheelchairs - perhaps that would be something you could manage when your back isn’t in spasm? I have three back conditions unrelated to my MS and strenthening my core has definitely helped with the lower back problems. It has also helped my MS-caused balance and mobility problems.

Btw, MS symptoms are shared by literally hundreds of other neurological conditions to the extent that even someone who can tick off all their symptoms versus an MS list probably still doesn’t have MS. (I even read recently that leaking breast implants can cause almost identical symptoms and MRI results!) I would think that the quickest way for you to properly explore the possibility of MS (other than expert opinion of course) would be to have MRI of brain and spine. If your neuro was willing to refer you to an MS specialist, would he not rescan you? (Assuming that the MS specialist has not already referred you for one.)

One last thing - have you tried muscle relaxants for your back spasms? Meds such as baclofen can be extremely helpful in preventing spasms and spasticity. Your GP should be able to prescribe you some to try if you haven’t already.

Karen x