MS Symptoms?

New diagnosis and before diagnosis
1

Hi,

Sorry for the long post trying of offer as much info upfront as possible. I am a 45 yr old male married with 3 kids, self employed and I am worried that I may have MS or some other Neurological problem, been to the Docs possibly only 3 times in my life before this occurred:

My symptoms started approximately a year ago completely out of the blue when the middle fingers of both hands went numb. I did consult my GP as it persisted for many week and then eventually after about 6-8 weeks it gradually went away. During the past 10 months or so after this occurred, I have been feeling increasingly tired with stiff aching joints and limbs, prompting me to visit my GP again in February 2012. I have now had bloods taken on 2 occasions and although there were a few issues no major concerns except very low Vit D. Since March I have been taking a high dose of Vit D supplement initially 10,000 IU / Day for 1 month then reducing to 5,000 IU / day after 1 month which I am still taking. I am also taking a single multi-vitamin.

Main Symptoms:
Tight Throat (Constant) feels strange like a slight obstruction but no choking and can eat / drink nornally.
Pins and Needles (initially constant for first 2 weeks then turned intermittent still the same after 5 weeks)
Numb Arms (after pins and needles turned intermittent my arms felt numb but this subsided after a few days now just intermittent tingly pins and needles)
Numbness in Left side of face from cheek to Jaw.
Weak bladder control, not complete loss of control or incontinent just weak flow.

I have explained all of this to my GP but he has offered no idea as to what could be wrong. I have been referred to my local Hospital where I had a full physical Neurological exam and a nerve conduction test, the result of that seems to be (verbal at the time not had official Dx) that I have Carpel Tunnel (this would not explain the intermittent pins and needles and twitches in my legs and feet that started to occur the same time as my arms?) Been told it will be 2 to 3 weeks before a follow up with Neuro so sitting in Limbo at present.

Symptoms to Date as they occured:

During 2011:

Numbness in both middle fingers, started feeling progressively tired with muscle and joint pain.

February 2012:

Appointment with GP for blood test results:

(ALT/SGPT slightly above range, Serum Bilirubin slightly above range, Plasma Viscosity slightly above range, Serum urate slightly levels above range, Low Vit D)

(2nd Blood test 1 month showed later these were improving).

3rd March 2012:

On doctors advice started taking 10000IU Vit D3.

10th March:

Feeling a little better more energy not as many joint pains.

18th March:

Virus (Flu / cold) type symptoms, started feeling irritable, dizzy, and forgetful, depressed, found it difficult to function properly in job. Poor concentration and ability to think and function clearly, nausea, loss of appetite, throat very tight uncomfortable swallowing. (Put this down to stress / anxiety but 4 weeks on still have tight throat when swallowing occasional pins and needles and tightness in arms).

22nd March:

Virus symptoms cleared but developed constant pins and needles in hands and feet.

31st March

Slight feeling of numbness in left side of face from cheek to jaw, pins and needles and slight numbness in hands, arms, feet and legs. Intermittent twitching in fingers and arms and some leg muscles, which disappear after very short time then return randomly. Difficulty concentrating, loss of appetite and nausea, constant tightness in throat felt mainly when swallowing, Irregular bowel movements, loose light coloured stools bouts of mucous diarrhoea. Spells of feeling “not quite with it”.

12th April

Pins and needles with intermittent slight burning sensation with numbness in hands and arms. Intermittent twitching of random muscles in hands and legs. Intermittent feeling of slight loss of sensation in left side of face from cheek to jaw.

17th April

Pins and Needles have got slightly better not there constantly anymore but still come and go daily. All other symptoms persist.

22nd April

Pins and Needles in Arms Hands Legs and Feet still slightly better (not there as often), numbness has generally improved twitching in arms / hands legs still persists but is random and infrequent still a “several times a day” ocurrance. Still have slight tight obstruction feeling in throat all the time and has never subsided during the past 6 weeks or so.

Other:

Bladder function seems slightly impaired, urine generally trickles out rather then being able to force it out (have had prostate exam which was fine).

Irregular and inconsistent bowel movements mostly watery with mucous or runny.

Rapid weight loss (1st 4lbs in 6 weeks).

Suffering from Acid reflux for many years, Hiatus hernia

Joints are weak and crack when inactive then move.

Medications

Lansoprazole for Acid reflux / Hiatus Hernia (stopped taking 3 weeks ago), Ranitidine (still very rarely take when required), Vitamin D 5000IU / Day, Multi Vitamin 1 / day.

I don’t know where to turn, I know some of the symptoms are probably stress and anxiety but the throat is there constantly and Pins and Needles have been around for a while now (over a month) and the feeling of numbness has been scary on occasions but has never prevented me from walking normally or using my arms.

Any advice would be very much appreciated, I am considering paying for a private MRI, have made enquiries the once being offered locally is a GE T1.5 scanner would this be of any use? Cost is around £800 for Brain and Full Spine with contrast. Worried for my future and for that of my Wife and 3 kids as I main earner self employed so need to remain well and active :frowning:

TopRooster

2

Im not really sure where to start on answering this, and I know from other posts on here there are numerous treatable conditions that mimic ms, but at the end of the day you are concerned about weird things happening to you and your GP can see from your abscence in his waiting room that its not normal for you to seek his advice.

I would be going to him and asking for a referral to a neurologist. It would then mean alot of tests to rule out a number of conditions before confirming any diagnosis. As to the scans I really cant comment other than if you need to pay to speed things for your own peace of mind then private will be considerably quicker. Have you never been offered a scan?

Pip

3

Hello, and welcome

As Pip already said, there are actually loads of conditions that mimic MS symptoms, so I’m afraid there are no shortcuts to finding out what’s going on - only a neurologist can diagnose, and only after various tests. Arguably the most important test is the MRI scan, and although going privately might get you the results quicker, the neuro you see may want to do it all again at his/her hospital (some are a bit funny like that) so it might be a waste of money.

If you decide that you do want to go for the scan privately, the settings are actually more important than the strength of the scanner. What you want ideally is a maximum slice thickness of 3mm in the brain and a maximum of 3mm axial slices in the spinal cord. Given that you are paying, you should also get a proper neuroradiologist’s report for your money.

There really could be a simple explanation for your symptoms so try not to focus on MS. Tbh, even if it is an MS attack that is causing some of your problems, there is a good chance that it never happens again - roughly 50% of people only ever have the one attack!

Karen x

4

Thank you for your kind replies, I will take onboard your comments and try to live in the present and not to worry too much about the future. I really am trying to remain positive, however the longer the symptoms persist the more difficult it becomes to ignore a serious underlying cause, hopefully it will turn out to be something that can be resolved.

5

I have just read your post and reading it it could have been me writing it. Have you found out what the causes of your symptoms were. Hopefully not too serious.

6

Hi, it’s been a while since my last visit here. Since posting I have had a whole load of tests, scans and bloods taken 5 times, first neuro suggested bfs, second said cfs, third said fibromyalgia, whatever I have, is not improving, if anything its getting slowly worse. Pins and needles in hands and feet, burning sensations as well, stiff hands and feet, muscles twitching all over intermittently, wake up most mornings with stiff legs and aching feet to the point where walking is very difficult, swallowing difficulties still there with constant tight throat swallowing saliva is an issue and have lots of mucous buildup in throat. Don’t have any problems eating or drinking. Just trying my best to live a normal life and be a good dad and husband, that’s really all I want.

7

Hi Toprooster x

Did you get a scan??? xjenx

8

Sorry! I can see now that you did! Where did they scan & what did they say about the results? xjenx

9

If I were you, I would find out exactly what blood tests have been done and what the results were. Have you had the original blood tests repeated again? I’m wondering what your B12 levels are too and I’m wondering if all the blood the neuros took was used to check for the basic things or for all the MS mimics (eg Hughes Syndrome - have you ever had a blood clot?). Knowing what to do next will be easier once you know exactly what’s been done to date. Karen x

10

Hi,

Thank you for your concerns and sorry in advance for the rant.

I have had a CT scan of Brain, MRI of Brain (only brain not spine), EMG x 1, NCS x 2, full Neuro workup x 3, bloods tested x5 (over a 10 month period). My GP said I have now had blood tests for “everything” I know I have had a whole bunch of blood tests for Thyroid (TSH), Parathyroid, Diabetes, Liver Function, Vitamin levels, Myasthenia gravis and many others, I should request all of my records but don’t want to be a burden or to be labelled a hypo so have stopped short of doing that. Have avoided going back to the docs for the past 3 months for same reason.

I can cope with things if they don’t get too much worse than this, I know people are dealing with infinitely worse situations. My current symptoms which I think are relatively mild are as follows:

Bouts of fatigue (most days) but not severe enough to stop me from doing a full days work. Fuzzy head (very mild vertigo?), periods of severe stiffness / aches / pains in feet / legs (mainly), stiffness and aches in hands and tightness in the throat which feels like someone is gripping my windpipe when I swallow (been like this since February 2012). Pins and needles and buring sensations which are intermittent, there one day gone the next, been through periods of months with none then they come back (hands and feet only).

Muscle twitching which has been around since March 2012 seems to have calmed down a little, don’t get them as often but still there every day all over in random places from face, lips, eyes, chin, arms legs, chest, back you name it. One new symptom is intermittent small jerking of an arm of leg, this happens randomly and only possibly a few times a day if that.

Have previously been through the mental turmoil of every disease that Dr Google has to offer but I am over this now, with a kind of acceptance of a “whatever may be” attitude. I must admint that If I knew the exact cause and the course of progression or cure, whatever then It would be easier to plan for the future and get on with my life, not knowing exactly what is wrong is terrible.

I am no longer worrying excessivly as stress was initially said to have been a cause, I have tried to just get on with my life, however the symptoms have remained so the worry never completely goes away.

I have a business to run, 3 kids and a wife to provide for, this keeps me busy and life must go on. I am so grateful that I can still function albeit not quite as well as I could 12 to 18 months ago. I have decided to sit things out waiting to either get better or worse, hoping for the best but really learning to appreciate life and my family and hoping for a return to good health for the sake of them. The most painful part for me is my wife and kids seeing me struggle to cope very slowly going downhill and having no real idea what is wrong.

11

TopRooster, Did you ever get to the bottom of this? I could be your double in many ways. My symptoms mirror yours, I too am self employed. I have a young family and am struggling to keep going, I’m not at all depressed but some days the pain in my feet and the pins and needles in my legs is hard to bare. Every test I’ve had (MRIs galore, bloods, lumbar puncture, allergy testing etc etc) has been negative. How are you now and are you any nearer to an answer? Thanks Mark

12

Hi there I have been having a lot of what u have had going on for over a year now! I also get shooting head pains on scalp though and cheat pain but that could be my acid reflux, muscles I’m neck also hurt!! And sometimes feel like chest and shoulders are ahaking\buzzing and sometimes light headed!! - how are u getting on?? John

13

Hey I am new here and came across this via google just searching google for such symptonms.

I am extremely worried as have pretty much the same as you have described eg numbness face, neck, fingers, muscle jerks randomness.

I am 26 years of age and a survivor of a head/brain injury which has led to me many problems like anxiety, epilepsy, depression, physical impairments (legs) but am walking again although joints are weak and easily struck with pain. I have been facing similar problems as you have mentioned over year now thought it was nothing but seems worse now as they lasting longer n more frequent.

Could my symptoms be linked with my brain injury and what are they. Is it serious stuff, it feels as though im deteriorating (or could that just me thinking like that). My thinking has slowed as it takes me slower to reply when asked question or talk in general.

I dont know…

:frowning:

14

Hi, it is probably best to start your own thread - more people will see it and be able to answer you.

If you feel your symptoms are getting worse i would go and see your GP. Neurological symptoms can be caused by so many things including Vitiman deficiencies, which can be easily corrected. So see your doctor, maybe get some blood tests done and maybe get into see a neurologist (if you don’t already have one?) and explain your new symptoms.

Don’t suffer in silence. Good luck, Laura :slight_smile:

15

Hello TopRooster

How are you?

x

16

Hi Lizzie

You may not have noticed, but TopRooster hasn’t posted since 2012. And this is the only thread he ever posted to. I’m hoping that means he got over his medical problems, and in the end didn’t have MS. Obviously I may be wrong, in which case I apologise.

If you wanted to start your own thread, just hit the button that says New Thread, give it a title and write what you feel.

All the best.

Sue

17

Oops, thank you Sue.

I hope he is OK.

xx

18

Hi Lizzie72, I’m still around! I still have most the symptoms that I described in 2012. Some have got worse, some have improved. The physical symptoms are less worrying than the bouts of depression, anxiety and general “head fuzz / brain fog” that my brain seems to suffer from on a daily basis. I have been told by the “experts” (i’ve seen a few) that it is probably Fibromyalgia however, I have never received a confirmed / official diagnosis. I have decided to just get on with life and make the most of every day, the memory and brain fog make it really impossible to hold down a job for any length of time but I do my best to try to provide a living for my family.

19

Hi all, I have been reading all the comments on here and just wanted to relay my story as it may be of help. I started having seizures on return from a holiday last year and then developed severe symptoms that are too numerous to mention. After going down the road with doctors on tests for adrenal tumours and echograms they did not know what was wrong with me and I was left to my own devices. I kept looking at my symptoms which were muscle twitching, facial,hand and leg muscle numbness, chest pains, headaches and blurred vision etc. In the end I persuaded my doctor to give me B12 loading injections even tho my levels were ok (but I had been supplementing). It does no harm to have them and my symptoms got better. I started self injecting daily and joined the B12/PA FB Forum who were of great support. However I felt that I just should not need so much B12 and consulted an NT in London who specialises in viruses. We ran more tests as I had been tested for Lyme before and it transpired that HHV 6 was very high in my cells. This is the virus that many MS patients have…in fact a lot of people have it but it only causes symptoms in some. There is a website for the HHV6 foundation which is a group of doctors and scientists that are researching more about this virus. I am reducing my viral load now with supplements and antimicrobials. I still need to inject B12 every 3-4 days which reduces my symptoms. I went rock climbing on holiday with my sons last week…this time last year I could hardly get out of bed. I hope this helps some of you in your journey. We are all different but there may be something of use to some of you. I wish you all the best.

20

Top rooster

Have you seen your blood results for at least thyroid, b12, iron and vit d. I have had abnormal results marked normal and have also had issues with the so called “in range” measurements.

In range on a blood test is only in range for a percentage of tests in a given lab, plus the issue that the UK ranges for certain issues are not where research suggests they should be for healthy individuals.

If tests are low in range or high in range, further investigation is needed. B12 and vit d levels are complicated and I suggest you do some reading around that. Thyroid is usually only tested with tsh which is not really good enough and again it’s pretty complicated so also worth a read about.