Hi Everyone I could use some advice. I will try to be breif. I got medical retirement about a year ago, due I thought to arthritis and Fibro however I do not think I relly fit in with that due to the fact that I think I am on the right meds anyway I am not too concerned. I am on Pregabatin, Sulfsalzine, Amytripilne and Cymbalta. My symtoms now are mainly both feet and legs to just below knees feel as if they are wrapped in bandages, I have pins and needles in fingers and toes and my feet go from hot to freezing with feelings of thousands of freezing pins in my feet and a very tight feeling all around the bottom of my ribs.
The arthritis dx is mailnly due to several disks damaged and I have been seeing a Rhumatologist who also dx fibo that was due to my back feeling like a pinboard. Please can anyone advise. I feel that my GP put everything down to Fibro. I see the Rhumy again next week and will give him a list of my symtoms. In the meantime has anyone any thought on this please - good or bad all will be useful.
An awful lot of different conditions cause very similar neurological symptoms so the fact that people with MS get pins & needles, etc, doesn’t necessarily mean that yours aren’t due to fibro, but if you are unhappy with the diagnosis, why not start by simply asking your rheumy if your symptoms are typical of fibro and if there are any other possible explanations for them?
Things like vitamin deficiencies (e.g. B12, D3) can cause neurological symptoms so it would be a good idea to get a full battery of blood tests done either via the rheumy or your GP. If they come back clear and your rheumy can’t explain the symptoms vs your current diagnoses, then it will be a bit tricky to refuse a neuro referral.
Btw, if your feet are freezing to the touch, then it is unlikely to be MS - perhaps a circulatory problem instead?
Thank you so much for your reply Karen. My blood has been done several times and I have now been told to double my D3 to 1,600 IU. I have been taking 800 for nearly two years now. My feet feel freezing to me but when I actually touch them with my hadns they feel normal temp. Because MS has come up when I google my symtoms it is sort of praying on my mind so I have decided that when I go for my next hospital appt. I will ask for copies of my MRIs ( full scan was done because of my disks) I will then try to find a Neuro (private) who will have the time to talk me through it all. Once again thank you I have been watching this site for some time now and like I said it is praying on my mind but I have been saying no it can’t be but now I feel I need to know for sure.
Some neuros are not exactly well versed in MRI so please be careful. (I know that sounds crazy, but a lot of them really haven’t the foggiest.)
It also depends on what type of scans were done. MS lesions show up best on FLAIR and PD scans and these may not have been run if they were not looking for neurological signs. T2 scans are good for the spine, but less so for the brain as it’s easy to miss smaller lesions on them. So before you spend any money having someone look at them specifically, check that they will have the right thing to work with because I doubt very much that they will waive their fee!
If you can afford a private consultation with a neuro (~£150-200), then it might be the easiest and quickest route. Even if the neuro doesn’t know a lot about MRI (and you never know, you might get one who does), a proper neurological exam should show up any signs of neurological damage. If it is clear, then MS is very unlikely. If there are abnormalities, the neuro normally transfers the patient to their NHS clinic for MRI, etc. If you go this route, make sure that your GP writes a supportive referral letter. If the letter says “diagnosed with X and Y but she insists that it must be MS” then you may find that the neuro is dismissive. Better for it to say “diagnosed with X and Y but is having neurological symptoms that are inconsistent with these.”
Hey you are quick I was just about to switch off when I noticed your post. You have given me a lot to think about, I did not realise there are different types of MRI. I now think my best plan will be to disscuss with the Rheumy as I have an appt. on Thursday and take it from there. I still think I would like to see a Neuro privately as I think he would have more time to explain things to me I have told my GP about the strange feelings in my legs and he basicaly says to ask the Rheumy.
To follow on from my first post my rheumy has asked for nerve condution tests I can arrange an apt. on Monday. A few times I have had really bad muscle spasms in my right leg at night, yesterday afternoon I had a horrendous spasm in the back of my right thigh the pain was indescribable and today I feel that muscle is sort of twitching. I also have a big muscle in my back which has never totally relaxed for about three months now. I have never had any muscle problems before ever. Last week I also had an xray on my back at the area with the muscle spasm so hopefully that may indicate something. I am also to have scans on ankles.
Please can anyone advise me could these tests together with my previous brain and full spine MRI’s discount MS as pos. dx.
Nerve conduction tests can be helpful in diagnosing MS and other neurological conditions because different types of conditions produce different types of result. It’s not foolproof though - it’s possible to get negative results and still have MS, for example.
I think that it’s possible to get spasms from low vitamin D. You could ask your GP for vit D injections to try and get your level higher quicker.
Your arthritis may be contributing too perhaps (e.g. discs pressing on the cord)?
Whether or not the nerve conduction tests and MRI can discount MS depends on how long ago they were done and whether or not you had symptoms before this. MS is a progressive disease - new symptoms reflect new lesions / neural damage, which increase in number over time. It’s also possible to have a clear MRI, but still have MS, especially in the early years.
The chance of having MS, but having symptoms that have lasted a while, clear nerve conduction tests, clear MRI and clear clinical exam is absolutely tiny though - it would effectively rule it out.
Thank you so much Karen, I have been taking 10,000 iu D3 for seven days now and I already feeel much better, sort of brighter, more with it, so maybe the low levels have caused some if not all my problems (live in hope) and I have an appointment for the nerve conduction test in four weeks so I guess I will just have to wait.
I wondered if anyone can offer me advice. I should start by saying that I have not been diagnosed with MS but am now almost hoping I am as other possibilities are more worring. I have been seeing a consultant due to bladder problems when he suddenly announced I should have an MRI scan I had that and the results say there are a few signs of inflamation on my spinal chord and I should see a neurologist. Now after the nuerologist’s nurse took a load of blood for tests I am booked in for a brain MRI and a chest xray. He then asked some, what I thought at the time were random questions about balance, eyesight, pins and needles, feelings of weaknes and more that I forget now. Anyway I looked these up and kept seeing MS referred to. I have looked at the various symptoms mentioned and I can say I have nearly all of them at some point or another. When the consultant asked me about general health I said I was OK but now I’m thinking maybe not.
In short, my balance is often poor like I am drunk, i have pins and needles in my hands, often have muscle tremors or acheing legs, had to have two eye tests as my vision around the edges of range was so poor in the first test, my concentration and short term memory are dreadful and i feel very lethargic a lot of the time. A lot of these have been going on for 10 years but getting so much worse now. I’m 48 and thought I was healthy until lately. With two young children I am suddenly terrified about what’s happening. No doctor or consultant has mentioned MS to me is that normal?
Sorry this message is so long and rambling, just needed to share/get it off my chest.
Thank you for creating this forum, good luck to all.
I wondered if anyone can offer me advice. I should start by saying that I have not been diagnosed with MS but am now almost hoping I am as other possibilities are more worring. I have been seeing a consultant due to bladder problems when he suddenly announced I should have an MRI scan I had that and the results say there are a few signs of inflamation on my spinal chord and I should see a neurologist. Now after the nuerologist’s nurse took a load of blood for tests I am booked in for a brain MRI and a chest xray. He then asked some, what I thought at the time were random questions about balance, eyesight, pins and needles, feelings of weaknes and more that I forget now. Anyway I looked these up and kept seeing MS referred to. I have looked at the various symptoms mentioned and I can say I have nearly all of them at some point or another. When the consultant asked me about general health I said I was OK but now I’m thinking maybe not.
In short, my balance is often poor like I am drunk, i have pins and needles in my hands, often have muscle tremors or acheing legs, had to have two eye tests as my vision around the edges of range was so poor in the first test, my concentration and short term memory are dreadful and i feel very lethargic a lot of the time. A lot of these have been going on for 10 years but getting so much worse now. I’m 48 and thought I was healthy until lately. With two young children I am suddenly terrified about what’s happening. No doctor or consultant has mentioned MS to me is that normal?
Sorry this message is so long and rambling, just needed to share/get it off my chest.
Thank you for creating this forum, good luck to all.
