Newbie needing help

New diagnosis and before diagnosis
1

Hi

I am new to this forum. Let me introduce myself.

I am a 43 Year old male who was diagnosed with Chiari Malformation 2008 and syringomyelia 2008 and Elhers Danlos type 3 2012. I had brain surgery for Chiari in April 2009. My symptoms were Dizziness, balance issues, drop attacks, headaches, electric shock sensations the symptoms are very similar to MS . I have struggled some what since then and have not been able to work.

Any way, the reason for me posting is i need help please.

I have been suffering with various symptoms for the last three years. They seem to be intermittent rather than perminantly with Chiari. I have problems for say a few weeks to a few months then they may ease off for a while then come back again some weeks months later. I suffer with headaches which are different from Chiari headaches ( they are pressure headaches which are disabling and are in the back of the head ). The headaches i suffer now start at the back and go into my eye either one which causes great pain. My eyesight is blurred most of the time, seems as though one of my eyes cannot focus then may change to the other eye. I suffer with muscle spasms which my GP has given me Baclofen for. I get tremors in my arms hands and legs. My legs and arms keep jumping and tightening spasticity. I have at this moment now had a flare up which has given me apart from the usual a new symptom which is my lower back has gone into spasm and it keeps transfering from my lower back to me left side and visa versa. My speach becomes slurred, i have trouble swallowing certain foods, i have suffered with impotence for three years. Spasms have now gone into my calf muscles and shoulders.I keep getting electric shock feelings in my arms , legs and face and i am walking with a stick.

I keep going to see my Neurosurgeon who tells me that my surgery had gone well with regards to my Chiari and that there is nothing more he can do and that i have to learn to live with it for the rest of my life. I have had three MRI’s now. The first with Contrast and the other two normal. 1 full MRI which just says i have a bulging disk. The syrinx in my spine has now shrunk. I keep telling my GP that there is still something wrong and i need to see someone. I have told him my concerns that i think it could be MS and asked him to refer me to a MS specialist. He has refused and said i have not got MS so he will not refer me but i could go privately. I am at the end of my tether. My Auntie suffers with MS and she seems to think that my problems are MS related. I have looked over my first two MRI’s for any evidence of Lesions. I can see a couple of white dots but it may be my imagination. I have had three Lumbars so far to relieve my headaches as the surgeon thinks they will help my symptoms but they dont. I have refused to have anymore done.

I keep having breathing troubles also .

I keep waking up in the night with both arms raised in the air either scratching hard on my arms or a light tickle ( weird ) and also believe i suffer with sleep apnea.

I went to my GP to see about my new back symptoms who said i have siatica which i know is nothing like what i am feeling. I went to A & E also who told me they were muscle spasms.I also suffer with spark like dots in my vision when i have flare ups.

I feel like a right hypocondriac

Sorry it is so long

Darren

Does anyone have any advise on what i can do.

2

Hi Darren, and welcome to the site

While I can sort of understand your GP not wanting to refer you straight to an MS specialist, I think it is very wrong of him/her to refuse you a referral to a neurologist because there is clearly something neurological going on that is unrelated to your current diagnoses.

I’m not a neuro, but the sparks in your vision and the head-eye pain suggests migraine to me, and migraine can cause all sorts of neurological symptoms (including things like slurred speech and blurred vision for example), but it might be something completely different - only a neuro would be able to say (NOT a GP!).

Could the spasms be a result of your EDS rather than related to the rest - maybe not directly, but because of how much work they have to do to balance out your hypermobility? [On this note, please be careful on baclofen - it can weaken muscles and add to falls in people with normal joints so must be even more likely in people with unstable joints. Oh, and in rare cases, baclofen can actually make spasms worse - they haven’t got worse since you started on baclofen have they?]

Breathing problems and sleep apnoea can go together if there is any obstruction or if someone has “central apnoea”. I believe it can also cause other symptoms too. You should really get it tested.

So, I guess what I’m saying is that there may be multiple things going on here. That or there is one thing that is causing all of it. Could that be MS? Possibly, but there are many other possibilities too. The only people properly qualified to work it all out are consultants - which means that your GP is wrong to withhold a referral!

My advice would be to see the GP again and say that you thought of MS because of your aunt and you are happy to accept that it probably isn’t, but that your current diagnoses do not explain the pattern of attacks you are having, the new type of headache, spasms and various other apparently neurological symptoms so you want to see a neurologist; ideally a good general neurologist.

One more thing: have you had a thorough battery of blood tests done recently? Including the normal stuff, but also thyroid, sodium, potassium, calcium, magnesium, vitamins B12 and D3, testosterone (I’m thinking of the impotence here) and anything else that the GP can think of that might be the culprit!

Hth. Good luck!

Karen x

3

Hi Darren,

Failing getting a GP to agree; yes you can go private; legal to mix private and NHS treatments.

Cost around £200 for consultation; no referral necessary but in your case I suggest you take as much medical history as possible; MRIs; diary of other complaints/treatments/symptoms etc.

The trick is finding a good MS Specialist in your area. For this I suggest you put a message on Everyday Living asking if anyone can recommend one in your area.

Good luck

George

4

Hi George, forgive me if I am wrong, but I thought even going private, you have to have your GPs referral. has this changed since I went private back in 1999?

pollx

5

I think that the way it works, Poll, is that most private consultants ask for a GP referral. Some private clinics do spell out which consultants will accept self-referral - so you have to infer that the rest do not.

Asking a GP which private consultant he/she would suggest is a good way of spelling out how serious one is, and most experienced GPs will know all the nearby consultants (who are usually in the NHS as well), and direct you to a good one.

Geoff