Results tomorrow... :-/

[Inactive_User]

Hello all,

I am going to see yet another Neurologist tomorrow - think this is the 15th to date (could be more). I have a long history of neuro conditions (see profile) and have been suffering with MS like symptoms for over seven years, which have progressively got worse over the past twelve months, with recurring spine spasms, which debilitates and takes me off my feet for up to two weeks at a time. The pain is constant; the latest symptom discovered three weeks ago: I was in work, and when I tried to take hold of a pen, I couldn’t get a grip of it. My finger tips were especially weird because they had no sensation in them, and are cold to the tip to touch. They have not improved! almost feels like my hand doesn’t belong to me - pretty much the same as my whole body when it decides to ‘pack up’ on me.

I haven’t been dx as yet, and it puzzles me because people on here appear to have different symptoms etc. I work with someone who has MS, and she is as fit as a fiddle…walks beter than me; looks healthy, and doesn’t have any relapses. Sot it makes em wonder how some manage to get easily dx with little symptoms that have only recently emerged, and yet some, like myself struggle for years and don’t feel heard by Neurologists?

My results tomorrow is from a full body scan (contrast dye). I am struggling today, and am in quite a bit of pain. The trigger being due to lying on the Dentists chair while I had a tooth extracted, so the different chair that my back isn’t used to has caused my spine to go into spasm again, and the disks are clearly protruding again.

I am just making my notes again for tomorrow, and am not particularly looking forward to the appointment, because I always feel like I am explaining pseudo symptoms - almost like I have a flashing sign saying “Liar” on my forehead.

My GP as per had splinters up his backside, and when I rang him to ask for advise re tomorrow all he could say was, “ask them what they would do differently compared to what they are doing now”. Not exactly helpful because I always end up asking them that anyway! We will see. My list consists of a total of, 44 symptoms for him to get his teeth in to.

My main focus is not to rush my time with him. I always feel like I have to hurry because the next person is waiting. Pathetic really! but it has clealry been a regular transference from previous neurologists.

Fingers crossed that I get a definate answer to this body that doesn’t feel like mine anymore :-/

Much love

Bev x

[Shuffler]

Hi Bev,

Hope you get the answers you need.

Lesions on the MRI seems to be the key. Without them, no matter the symptoms, it seems unlikely, from what I’ve read, that the neuros will make an MS diagnosis.

I’m still new to all this as just newly dx myself so I’m sure someone wiser and more experienced than me will be along shortly with better information. This is definitely a good place to come with questions.

Good luck.

[Inactive_User]

Hi Shuffler,

Thanks for responding.

Sorry to hear about your dx. What was the final symptom/ observation that determined your dx? And if you don’t mind me asking, what symptoms do you have, and for how long?

Bev x

[Inactive_User]

Hi Shuffler,

Thanks for responding.

Sorry to hear about your dx. What was the final symptom/ observation that determined your dx? And if you don’t mind me asking, what symptoms do you have, and for how long?

Bev x

[Shuffler]

Hi Bev,

I landed in hospital just under 2 years ago with numbness in both feet and legs although much stronger in the right. I also had pins and needles and odd sensations and vibrations. All my tests, LP and MRI, were clear so I left hospital with a dx of Transverse Myelitis and told there was an almost nil to zero chance of it being MS with the clear MRI results. Most of the numness etc cleared eventually, but I was left with a leg which drags after walking for about half an hour and my walking speed deteriorates to not much more than a shuffle. Unfortunately there’s been no improvement on that at all, if anything I think it’s deteriorating.

Since then I’ve had various things from odd buzzings to stabbing pains, but the 2 things that seemed to catch my neuros attention was an odd sensation and odd taste on one side of my mouth which lasted about a month and was only really obvious when I eat, drank or cleaned my teath and a problem when walking with the other leg which again lasted about a month. He ordered new scans and this time they showed lesions in the brain and brain stem which clinched the dx.

Since dx (mid March) I’ve also had a problem with eye pain in one eye when moving my head or my eyes. It only lasted a few days but my MS nurse confirmed it was probably MS related.

My first batch of meds is being delivered Thursday, so now waiting an appoinment to be shown how to inject.

Let us know how you get on tomorrow.

[Inactive_User]

Hi,

One of my symptoms is the odd sensation/tatse in my mouth, and I haven’t put it on my list to deliver to him tomorrow, for fear of him thinking I have lost the plot when I explain the odd taste of what can only be described as an elephant smell and tatse in my mouth lol.

I will let you know what happens tomorrow.

B

[Inactive_User]

Hi,

One of my symptoms is the odd sensation/tatse in my mouth, and I haven’t put it on my list to deliver to him tomorrow, for fear of him thinking I have lost the plot when I explain the odd taste of what can only be described as an elephant smell and tatse in my mouth lol.

I will let you know what happens tomorrow.

B

[Inactive_User]

It may be too late, but I would caution about giving the neuro a list of so many symptoms. Not only do I doubt there will be enough time, but most neuros consider a long list of symptoms to be a sign of functional or psychological conditions rather than something they can help with. Obviously how things go will depend on the MRI results, but if you have the chance I would recommend cutting back that list to the most serious symptoms only.

Getting a diagnosis of MS relies mainly on the patient’s history, clinical exam and test results, especially MRI. The severity of MS varies massively and there are a large number of people who appear to be perfectly normal to others; it’s difficult to tell for sure though because so many symptoms are invisible.

I hope your appointment goes well.

Karen x

[Inactive_User]

Hi,

Karen, Thanks for the advice (yes too late) lol. I hear what you are saying about ‘cutting’ down symptoms due to a sign of functional, or psychological presentation. He knows what my profession is, therefore, there was no doubt in his mind about psychological-pseudo symptoms etc, which is always a positive when they know what my job is, but a shame for those that they consider to have less psychological contact, but I won’t go in to my frustrations about the referrals I get from Psychiatrists! I must add that my ‘long list’ of symptoms are equally as serious as the next one, therefore, impossible to prioritise :-/

I saw my Consultant today, who advised me that the Radiologist has not yet sent a report of the mri contrast dye to my consultant. Initially, it felt like I had a waste journey. However, he appeared to be having a good day, and was happy to sit and take note of ALL of my symptoms. I think he felt a little guilty for my wasted trip, which he could have easily postponed until the report came back.

Anyway (to cut out the waffle) all of my 44+ symptoms are finally logged. I didn’t feel dismissed, and he states that the symptoms are not linked to my other neurological condition (AVM in the brain and epilepsy). I asked in his his profesional opinion what his thoughts were, and he very quickly put his hands on his head, and wheeled away from me in his chair, leaving me feeling somewhat lost and alone (again). He said he didn’t want to comment because the results of the mri are not back (seems reasonable) and he is referring me to a neuro nearer my home. I also go back to see him for my results in three months (feels like forever).

I have asked if he will refer me ‘specifically’ to an MS specialist neuro. He stated that ALL neuro’s know about MS. I quickly pointed out that previous neuro’s that I have seen have been quick to state they are not MS specialists, therefore, unable to comment further (pretty much what he was doing) and are firmly on the fence with splinters up their bottoms. He stated that the previous neuro’s should not have said that to me, and he was confused why they would say that - explaining that they all have MS kowledge etc etc. I didn’t have the energy to state that they do specialise (he is the expert after all) I know this because I have a family of Dr’s.

SO… I threw the MS card at him, and asked him straight as follows, “In your opinion, and taking all of my symptoms into consideration would you say that they mirror, and are likely to be symptoms of MS?” he replied, “YES” but quickly stated, “let’s not get carried away, and wait for the results, and referral to the new neurologist” (fare enough)

The above (for me personally) was a step forward. My symptoms were ‘heard’ and he acknowledged my deterioration, and short remissions. So, yet again, I am back on the treadmill of waiting… waiting for another opinion from yet another neurologist - who could potentially be arsey like the others and state they do not have MS specialism; I also have to wait for my results in August (It feels a lifetime away). I am a very positive person, and always look for the positive, but I must admit the relapses are knocking me for six, and each time take longer to recover from…I probably get one or two weeks of ‘slight’ relief, and then back on the relapse treadmill. The numbness and loss of sensation (and other symptoms) is constant - new symptoms being loss of sensation in my fingertips.

That’s it from me for now!

Wishing you both well.

Bev x

[Inactive_User]

Hi,

Karen, Thanks for the advice (yes too late) lol. I hear what you are saying about ‘cutting’ down symptoms due to a sign of functional, or psychological presentation. He knows what my profession is, therefore, there was no doubt in his mind about psychological-pseudo symptoms etc, which is always a positive when they know what my job is, but a shame for those that they consider to have less psychological contact, but I won’t go in to my frustrations about the referrals I get from Psychiatrists! I must add that my ‘long list’ of symptoms are equally as serious as the next one, therefore, impossible to prioritise :-/

I saw my Consultant today, who advised me that the Radiologist has not yet sent a report of the mri contrast dye to my consultant. Initially, it felt like I had a waste journey. However, he appeared to be having a good day, and was happy to sit and take note of ALL of my symptoms. I think he felt a little guilty for my wasted trip, which he could have easily postponed until the report came back.

Anyway (to cut out the waffle) all of my 44+ symptoms are finally logged. I didn’t feel dismissed, and he states that the symptoms are not linked to my other neurological condition (AVM in the brain and epilepsy). I asked in his his profesional opinion what his thoughts were, and he very quickly put his hands on his head, and wheeled away from me in his chair, leaving me feeling somewhat lost and alone (again). He said he didn’t want to comment because the results of the mri are not back (seems reasonable) and he is referring me to a neuro nearer my home. I also go back to see him for my results in three months (feels like forever).

I have asked if he will refer me ‘specifically’ to an MS specialist neuro. He stated that ALL neuro’s know about MS. I quickly pointed out that previous neuro’s that I have seen have been quick to state they are not MS specialists, therefore, unable to comment further (pretty much what he was doing) and are firmly on the fence with splinters up their bottoms. He stated that the previous neuro’s should not have said that to me, and he was confused why they would say that - explaining that they all have MS kowledge etc etc. I didn’t have the energy to state that they do specialise (he is the expert after all) I know this because I have a family of Dr’s.

SO… I threw the MS card at him, and asked him straight as follows, “In your opinion, and taking all of my symptoms into consideration would you say that they mirror, and are likely to be symptoms of MS?” he replied, “YES” but quickly stated, “let’s not get carried away, and wait for the results, and referral to the new neurologist” (fare enough)

The above (for me personally) was a step forward. My symptoms were ‘heard’ and he acknowledged my deterioration, and short remissions. So, yet again, I am back on the treadmill of waiting… waiting for another opinion from yet another neurologist - who could potentially be arsey like the others and state they do not have MS specialism; I also have to wait for my results in August (It feels a lifetime away). I am a very positive person, and always look for the positive, but I must admit the relapses are knocking me for six, and each time take longer to recover from…I probably get one or two weeks of ‘slight’ relief, and then back on the relapse treadmill. The numbness and loss of sensation (and other symptoms) is constant - new symptoms being loss of sensation in my fingertips.

That’s it from me for now!

Wishing you both well.

Bev x