I had a brain scan 7 months ago which showed lesions and demylation, I had a lumber puncture in January this year which was clear but I had a high csf pressure which was drained. I had to wait 10 weeks to see the neurologist but prior to this I saw my own gp who had the report from the neurologist, this stated that I could possibly have idiopathic intracranial hypertension and should start on medication immediately? I saw the neurologist who said I don't have MS or idiopathic intracranial hypertension but ME. I have more of MS symptoms, the neurologist was very rude and didn't listen to me or ask about my symptoms. I've really had enough. My mum who attended with me has said she would pay for a second opinion as all my family can see how I've deteriorated over the last couple of years. I posted in the MS forum a while ago as my gp did say it's looking more like MS. Yesterday I felt so poorly and slept all day and night. This isn't normal. I'm trying to get back to work but finding it very hard, this fatigue and heavy legs is so life deliberating. I can cope with the other symptoms as they have become part of me. But I could chop my legs of, it's like climbing a mountain going upstairs and waking as become a task. Has anyone experienced problems with a diagnosis.
Yes getting a diagnosis for ME or even MS is very difficult. There is a condition that has been linked to Chronic Fatigue Syndrome and MS. It's called Nutcracker Syndrome (Left Renal Vein Compression). There is a lot of information over the past 5-10 years associating the Nutcracker Syndrome to Chronic Fatigue Syndrome. I have a similar condition called May-Thurner Syndrome (Left Iliac Vein Compression). I met another lady that was just diagnosed with May-Thurner and Nutcracker Syndrome and she knows they can cause ME/CFS too. Both of these vein compression syndromes are starting to be frequently diagnosed in MS as well. May-Thurner Syndrome was causing me Chronic Fatigue and Heavy Legs as well as many other problems. I had a stent placed about a year ago and almost overnight the Fatigue and Leg Pain were gone, as well as the brain fog, anxiety, and every other ache and pain in my body. I would recommend going to see a Vascular Surgeon that is very familiar with these conditions as most doctors have no idea the problems they can cause. It's possible if you do have either or both, a simple stenting procedure could give you great relief from your fatigue and pain.
Thank you for replying, I've never heard.of this but I'll have a look. I'm having a second opinion as my family know the daily struggle and have seen a deterioration in me over the last couple of years.
Do you mind if I ask what other symptoms you're experiencing?
Here's a list of some other problems that May-Thurner Syndrome can cause from a Vein Clinic Website:
Extreme Fatigue
Anxiety
Depression
Exercise Intolerance
At 70% or more compression of the Left Iliac Vein can cause Leg Pain or Swelling, Pelvic Pain, Pain w/Intercourse (Dyspareunia), Pelvic Pain after Intercourse (Post-Coital Pain), Lower Back Pain, or Urinary Bladder Discomfort.
That's exactly what I had. About 70% compression of this very large vein.
My symptoms are:
Fatigue, I feel exhausted most of the time
Heavy legs
Facial and neck tingling sensation
Right leg and foot cobwebs like feeling
Stumbling and balance problems
Speech and word finding difficulties
Headaches
Blurred vision
Right leg and foot pins and needles and it can burn
Dropping things.
Over the past 2 years these have become a daily struggle. I hoping it won't be long before I get a second opinion.
I was having most of the same problems and they were all caused by May-Thurner Syndrome:
Extreme Fatigue
Terrible Anxiety
Difficulty Breathing
Word Loss
Balance Issues
Heavy Legs
My friend with May-Thurner Syndrome and Nutcracker Syndrome has the same problems. They can cause many of the same symptoms and often overlap so it's a good idea to get checked for both. A Pelvic Venogram for May-Thurner and Renal Venogram for Nutcracker Syndrome are the Gold Standard for diagnosing these 2 conditions. May-Thurner is one of the "better" ones to have. A simple stenting procedure gave me almost complete relief overnight from most of my problems.
Thank you, I've not looked into them yet but I'm definitely going to.
Hi Lulu
My heaven's you're having a rough time. you have my sympathies. the problem with these neurological conditions is, apart from the devastation they cause that is, they also have many overlap symptoms. many of the symptoms you have mentioned also fit the neurological symptoms of low vitamin b12. do have a look at the website and forum ''HealthUnlocked''/PAS. it's an excellent & informative web site.
C
Hi lulu,
Yes it can be a struggle to get a diagnosis. In CFS/me there is often a trigger, can you remember anything happening before onset of symptoms? A virus, surgery, a break up, something that would challenge your body/brain in some way ? I get heavy legs and where it feels like I 'm walking like a toddler, the condition has many not nice symptoms as you listed. There are cross over symptoms of Ms and Me and so I 'm not surprised you're confused. It makes it more difficult whern the specialist is rude too. You can ask your GP to refer you to another neurologist. I had this with a neurologist and went to a different hospital entirely. The new specialist was a true professional and I had a full MRI (I have other issues from a fractured spine that I 'm trying to get to the bottom of) blood tests and he was patient, truthful and I felt heard. Makes all the difference.
Good luck with the second opinion
Beverley
My sister had problems with getting her MS diagnosed. The first doc thought it was systemic lupus. It wasn't. She finally got a diagnosis after a lumbar puncture that gave a clear diagnosis. Also, she, too, had brain scans that showed the typical MS lesions. There was no doubt that it was MS. I wouldn't wish that on anyone, but neither wold I want to be walking around not knowing what was the matter. And yes, she also had trouble walking. Heavy legs. Stairs were impossible. Walking became a chore. Get a good diagnosis. There is something available for MS patients now that was not available when my sis was alive, and from what I hear it is very effective. Good luck.
Thank you Beverly, it is very frustrating and so life deliberating when you have always been active and worked full time for 30 years. At the moment I just feel like I'm fighting all the time for answers. Limboland is very lonely, I've spoke to the neurologist Secretary today and they are referring me to the Walton Centre at Liverpool. It's a 100 mile round trip but I'm hoping it will be worth it and as it private I'm hoping for a better bedside manner for the consultant. Hopefully you'll get sorted soon too.
Louise
Hi Caitlin,
I take vitamin B and D as I've always had low levels. I'll have a look at the website too.
Thank you
I'm hoping that when I see the next neurologist he'll be able to give me more answers, my own gp thinks it's looking more like MS but obviously can't diagnose it. I'm hoping it won't be long before I get a call for an appointment. Im going round in circles at the moment which is frustrating.
Hi Louise,
I hope it's worth it for you also. I really do hope he 's less rude ! Do you suffer with long journeys too ? Make sure you take someone with you and write things down as if you get the brain fog like I do, you end up forgetting things on the day.
It is hard accepting such symptoms when you were a full and active member of society for such a long time and still want to be that person.
Hope you get an appointment soon
Beverley
Thank you Beverly, my Husband will take me and my Mum will be coming too as she's paying for me to go private, she was disgusted with the neurologist and he put her down when she asked a question. I've made a list of questions to ask him 😊
Louise
That's good you have someone to go with you but even more shocking he was rude to her as well !
Keep us informed of how it goes
Beverley
Yes I will
Louise
Hi Lulu
Yes, do have a close look at the neurological symptoms of low b12 or Pernicous Anaemia (PA). It's effects are very different to other B vits. B12 a pervasive condition, leaving one feeling totally wiped out with wide ranging symptoms, that vary from severe anxiety/depression even psychosis in severe cases, concominant with a host of neurological problems from balance problems, to numbness/tingling and/or burning sensations in the arms/legs. cognitive symptoms i.e. forgetfullness,damentia like symptoms, confusion, feeling muddled and disorientaited are often prevalent to varying degrees. if you're too exhausted to trawl through all the info., just give the Pernicous Anaemia Society (PAS) a ring and they'll be able to help: 01656769717. low b12 through malabsorbtion & digestive problems frequently accompanies ME/CFS. once diagnosed it's easily treated. MS/ME/CFS are often misdiagnosed & confused with for low b12 .
C
Hi lulu
I had all the symptoms your expressing, my systems where identical to MS, although nothing showed up on MRI scans or other tests. I had fibromilga chronic fatigue each year I got worse healthwise. I'd collapse faint constantly daily had heaviness aches pains headaches numbness I couldn't digest food any longer either. I ended up flying out to see prof scholbach who has a clinic in Germany he diagnoses artery compression and knows alot about these conditions. I felt as if I was diying and Drs here in UK wernt helping. I flew out to see prof scholbach got diagnosed with 5 artery compressions each one giving me multiple health problems. 8 was diagnosed with nutcracker syndrome ncs, median accurate ligament syndrome mals, pelvic congestion syndrome pcs, May thurner syndrome mts and a compression under the left femoral vein in hip. Iv since had a new type of surgery abroad in Germany different to what offered in the UK and around the rest of the world even. I'm now 100% better I don't have food intolerance now I don't faint have pots or autonomic problems. I have zero vein pain I don't need a wheel chair or to sleep at all during the day no infections headaches 5heyve all gone I feel better now than I ever have x